tag:blogger.com,1999:blog-28100364714503061712024-03-05T02:06:27.103-05:00I'm an MS ActivistMS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.comBlogger425125tag:blogger.com,1999:blog-2810036471450306171.post-60220187376798038882013-06-13T09:48:00.001-04:002013-06-13T09:49:16.504-04:00CATCH YOU ON THE FLIP SIDE<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: large;"><span style="font-family: inherit;">Thank you
for your readership and subscription to the MS Activist blog! In assessing each
of our communications with MS activists (assessments are necessary given our
limited non-profit resources), </span>we've<span style="font-family: inherit;"> recognized that this blog needs some
change. We’re shifting the way we present information in order to better
support your engagement in MS activism—so read on to find out where to find
what info! <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><b><br />Want News? </b>The “news” content of this
blog will now be featured on our website. From now on, please visit </span><span style="font-family: inherit; font-size: large;"><a href="http://www.nationalmssociety.org/government-affairs-and-advocacy/index.aspx">nationalmssociety.org/advocacy/</a> </span><span style="font-family: inherit; font-size: large;">for an up-to-date feed of recent MS advocacy news. Clicking the feed icon will allow you to subscribe to the news feed
as you do your other important news. You can expect this news feed to:</span></div>
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<ul>
<li><span style="font-family: inherit; font-size: large; text-indent: -0.25in;">announce or provide summaries of the Society’s
large advocacy events and activities</span></li>
</ul>
<ul>
<li><span style="font-family: inherit; font-size: large; text-indent: -0.25in;">highlight MS advocacy progress or successes at
the local, state and federal levels. State and local advocacy news will also
appear on your</span><span style="font-family: inherit; font-size: large;"><span style="text-indent: -0.25in;"> </span><a href="http://nationalmssociety.org/chapter" style="text-indent: -0.25in;">chapter’s home
page</a><span style="text-indent: -0.25in;"> and in local blogs including:</span></span></li>
</ul>
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<span style="font-family: inherit; font-size: large;">-Washington/Montana/Alaska : "We Move MS" <a href="http://wemovems.blogspot.com/"><span style="color: blue;">http://wemovems.blogspot.com/</span></a><o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">-North and South Carolina: "activisMS" <a href="http://activisms.blogspot.com/"><span style="color: blue;">http://activisms.blogspot.com/</span></a><o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b>Are You a Digital MS
Activist? </b>In the spirit of blogging and social media engagement, please
become a digital MS activist by following the easy steps at <a href="http://nationalmssociety.org/digimsactivist">nationalMSsociety.org/digiMSactivist</a>,
which includes Twitter <a href="https://twitter.com/mssociety/activism">lists</a>
and hashtags to follow (start with #MSactivist), how to find your public officials
on Facebook and more!<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b>Want Updates and
Action Alerts? </b>Receive federal advocacy news and opportunities to take
action, be sure to <a href="http://www.nationalmssociety.org/msactivist">join
the MS Activist Network</a> .<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b>Craving Personal
Stories and Connection? </b>Stories of MS activists and the importance of
activism in the MS movement will continue to be featured on our MS Connection
blog at: <a href="http://www.msconnection.org/Blog"><span style="color: blue;">http://www.msconnection.org/Blog</span></a>
. These stories aim to encourage other people who care about MS to take action
or to become MS activists. If you have a story to share (are you a blogger in
the rough?), please visit <a href="https://www.nationalmssociety.org/mystory">nationalMSsociety.org/mystory</a>
to share, or connect with others who have similar interests and passions at <a href="https://www.msconnection.org/">MSconnection.org</a>.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">Again, thank you so much for your readership and comments
over the years! We look forward to connecting with you – and connecting you
with other MS activists and your officials – in the ways YOU want to moving
forward!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbXIi4NS42uObW6FdGQ9oIP63zV4foSkYkjHdyGDHT-FOVi0e_Ig6uAlh4EdmniEuAFR16FSxOT0PueehLJUiRKKReINZ9zIWuFD31H_x16l8A5WN8-jMyW4yyyaWEeHDGMez404vMPG-4/s1600/240.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbXIi4NS42uObW6FdGQ9oIP63zV4foSkYkjHdyGDHT-FOVi0e_Ig6uAlh4EdmniEuAFR16FSxOT0PueehLJUiRKKReINZ9zIWuFD31H_x16l8A5WN8-jMyW4yyyaWEeHDGMez404vMPG-4/s320/240.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Public Policy Office's blog is "moving" </td></tr>
</tbody></table>
</span><o:p></o:p></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-51648237002821715612013-06-11T11:15:00.001-04:002013-06-11T12:12:49.663-04:00RIDING FOR A WORLD FREE OF MS<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfdV3DGRManQSfBzGYB50CC0eNXfftsUqOP_zbkr3UeybxPcPwbExeTw-3ONjxBL5woAiqSEUmntOJLTfV2YMhbTMOKClLR7ouDT-reS7sVmGrLfq2AhAek7dr6rkBihyphenhyphenKPKPSVv6bsRrJ/s1600/Finish+Line+ZiMS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfdV3DGRManQSfBzGYB50CC0eNXfftsUqOP_zbkr3UeybxPcPwbExeTw-3ONjxBL5woAiqSEUmntOJLTfV2YMhbTMOKClLR7ouDT-reS7sVmGrLfq2AhAek7dr6rkBihyphenhyphenKPKPSVv6bsRrJ/s640/Finish+Line+ZiMS.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<span style="font-family: inherit; font-size: large;"><span style="color: #222222;">Each year, the
National MS Society’s Bike MS events bring people together to help create a
world free of MS by raising funds and awareness. The funds are used to support
programs, services, and MS research. The Society’s National Capital Chapter
hosted Bike MS: Ride the Riverside on June 8-9, where 900 cyclists gathered in
National Harbor in Fort Washington, Maryland, with a single mission—to end MS.<u1:p></u1:p></span><o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: #222222;"><span style="font-family: inherit;">This year’s
two-day ride was the 31st anniversary of the D.C. metropolitan area’s Bike
MS, the longest-running cycling event in the area. Bike MS: Ride the Riverside
had a variety of routes ranging from 30 miles in one day to up to 132 miles
over two days. Together, these dedicated riders raised more than $700,000! At
the finish line, participants were met with food and drink along with live
music, massages, and lots of cheering fans. </span><u1:p></u1:p></span><o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM_o4nsHAAnJcxU_dJyxGbEZW5O2ULbLAhMYQ8MicMwWtBdIX5bae0xBKNpWxvQpJWkk8K2jTEIcvi0_VzMvY8vUN6db7CKes4rl_ToS3BwL7mqWX4rdk0NFmFmBSPxToEa68gMKQ5WEem/s1600/tutus.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiM_o4nsHAAnJcxU_dJyxGbEZW5O2ULbLAhMYQ8MicMwWtBdIX5bae0xBKNpWxvQpJWkk8K2jTEIcvi0_VzMvY8vUN6db7CKes4rl_ToS3BwL7mqWX4rdk0NFmFmBSPxToEa68gMKQ5WEem/s320/tutus.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Julie Baker with a teammate</td></tr>
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<span style="font-family: inherit; font-size: large;"><span style="color: #222222;">Rider Julie
Baker of Fairfax, Virginia, wore an orange tutu and described the Bike MS: Ride
the Riverside enthusiastically. “It was a fun course and great atmosphere!”
Baker was riding for her daughter, Cora, who diagnosed with MS last year at the
age of 20. Baker also mentioned that she planned on riding again next year. <u1:p></u1:p></span><o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: #222222;">Bike MS: Ride
the Riverside with the National Capital Chapter is one of the Society's 100
rides taking place across the United States this year. Over the next few
months, riders in all states across the country will bike to create a world
free from MS. Are you interested in participating in Bike MS? It may not be too
late! Click</span> <a href="https://secure3.convio.net/nmss/site/SPageServer?JServSessionIdr004=i0217k8375.app323a&pagename=BIKE_National" target="_blank">here </a><span style="color: #222222;">to find a ride
near you. <u1:p></u1:p></span><o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><span style="color: #222222;">MuckFestMS, a
mud and obstacle fun-run, is also in full swing for the summer! Click <a href="http://main.nationalmssociety.org/site/PageServer?pagename=HOM_MUCK_homepage" target="_blank">here</a> to
see if you can still participate! </span></span></div>
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<u1:p></u1:p></span><br />
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<span style="color: #222222;"><span style="font-family: inherit; font-size: large;">Thank you to
all of the riders, volunteers, and cheering fans who help make Bike MS: Ride
the Riverside a success!</span><u1:p></u1:p></span><o:p></o:p></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWXbyy73nUTPLpI0kQLYXVqVzqEyWtUuyutlaydRVvcEdu-KKOo3y1cwHc2nXgeeLUdRyM0nrPGFgdjSTHkhAGc1KFvEUvfcWw4j7wFkKC8ubTOdDU_6aaBVtE2zdMEbtyqoNMzL27AOy7/s1600/Saul+Pilchen.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWXbyy73nUTPLpI0kQLYXVqVzqEyWtUuyutlaydRVvcEdu-KKOo3y1cwHc2nXgeeLUdRyM0nrPGFgdjSTHkhAGc1KFvEUvfcWw4j7wFkKC8ubTOdDU_6aaBVtE2zdMEbtyqoNMzL27AOy7/s400/Saul+Pilchen.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saul Pilchen at the finish!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpI-PLYBYN3JqEUzrrYK-8yy3lBnvxtlasZpRxBkvZT_c-cQTOre5ihhf-h7bX92idC_5SVSs5DAB53fT9wzI3foSFum868PvUlcVp_opal-_ycbffSi9xR97kHrtwdb-PUb4AgIUJ6QfB/s1600/collie.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpI-PLYBYN3JqEUzrrYK-8yy3lBnvxtlasZpRxBkvZT_c-cQTOre5ihhf-h7bX92idC_5SVSs5DAB53fT9wzI3foSFum868PvUlcVp_opal-_ycbffSi9xR97kHrtwdb-PUb4AgIUJ6QfB/s400/collie.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A furry friend cheers on the cyclists!</td></tr>
</tbody></table>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-30718847282256641132013-06-05T09:31:00.001-04:002013-06-05T09:48:35.224-04:00“ACTVST” LICENSE PLATE SPOTTED IN NEW YORK!<span style="font-family: inherit; font-size: large;"><br /></span>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfpTKeYsNS3BpAvae3Wl90r_LKPyTysu6Gfiig8ffg9yOgT4OuV7sc1fzKE0-DyHdpyCHElrbisDK27o-18I9bXxow6bVRGaB8KYpx5dWkytLQMLHVp2Xq8mzFtqUFaE5378RgyTQyWLPN/s1600/181214_10200601065842651_1284321455_nn.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfpTKeYsNS3BpAvae3Wl90r_LKPyTysu6Gfiig8ffg9yOgT4OuV7sc1fzKE0-DyHdpyCHElrbisDK27o-18I9bXxow6bVRGaB8KYpx5dWkytLQMLHVp2Xq8mzFtqUFaE5378RgyTQyWLPN/s400/181214_10200601065842651_1284321455_nn.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Steve Davis with his NMSS "ACTVST" plate</td></tr>
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<span style="font-family: inherit; font-size: large;">MS activist Steve Davis now has another way to display his
involvement with activism and the National MS Society: his car’s license plate.
In New York, MS Coalition Action Network and the Department of Motor Vehicles
launched a custom MS license plate to benefit pediatric MS research and raise
awareness about MS. The Davis’s car is
now adorned with a National MS Society license plate that has “ACTVST” across the
plate. “My daughter and I went through many custom plates available, and
‘ACTVST’ was available and just perfect,” Steve remarks. Sales from the MS
License Plate Program have provided more than $26,000 for pediatric MS
research.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">Steve Davis has been an MS activist since 2008, when his
wife of 21 years, Liz, was diagnosed with MS. After Liz’s diagnosis, Steve first
got involved with the Society's Long Island Chapter through Bike MS, Walk MS,
and NYC's climb to the top of 30 Rockefeller Plaza. In December 2011, the Davis’s were asked to be
guests on Anderson Cooper's talk show "Anderson" to talk about the effect of MS on their family. “MS has affected all of us, including our
children, Charlotte and Joey,” Steve says. Liz is now in a clinical trial for a
disease modifying therapy for MS.<o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSZgNavuMdj80KF_w-oWBcqCtP_SWDscNmFGiBLwroc6XSJgn4sMXC25yfl3RyZR5Kj6BZedUcBh1E0jWQUg_zYYut7DviPFkYg64ZwFMmkfv4UNtsRjw2bYH0CTKy2i5MMLKSO7W-Ejx-/s1600/Anderson+Show.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="272" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSZgNavuMdj80KF_w-oWBcqCtP_SWDscNmFGiBLwroc6XSJgn4sMXC25yfl3RyZR5Kj6BZedUcBh1E0jWQUg_zYYut7DviPFkYg64ZwFMmkfv4UNtsRjw2bYH0CTKy2i5MMLKSO7W-Ejx-/s400/Anderson+Show.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Liz, Steve, Charlotte, and Joey Davis on "Anderson"</td></tr>
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<span style="font-family: inherit; font-size: large;"><br /></span>
<span style="font-family: inherit; font-size: large;">This past January, Steve was chosen as Government Relations
Committee (GRC) Co-Chair of the Long Island Chapter, New York, and attended the
Society’s Public Policy Conference (PPC) in Washington, D.C. in March. On May 21, Steve traveled to
Albany, for a mini State Action Day with his 20- year- old daughter, Charlotte,
who also is a GRC member and newly sworn in Navy Recruit. Steve, Charlotte, and
other MS activists met with state legislators to ask for support for programs
that affect those living with MS.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5GFmLHorP1Suhs_YAzir4uJx2d7R7rTYOKnal7023j5Wp8-Zv7u_B8Lf7mtA_TjjC_QDxia7FSpHiW-Qx5bwzY3svdf4sG-2cx7QDfYPL650HZxl30st71C4PLK4BXHsF9RRlxCz48mnI/s1600/Mini+Lobby+Day+2013+Charlotte,+Assemblyman+Lavine,+Gene+Veigl,+Marty,+Steve.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5GFmLHorP1Suhs_YAzir4uJx2d7R7rTYOKnal7023j5Wp8-Zv7u_B8Lf7mtA_TjjC_QDxia7FSpHiW-Qx5bwzY3svdf4sG-2cx7QDfYPL650HZxl30st71C4PLK4BXHsF9RRlxCz48mnI/s400/Mini+Lobby+Day+2013+Charlotte,+Assemblyman+Lavine,+Gene+Veigl,+Marty,+Steve.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MS activists with Assemblyman Lavine (NY-13)</td></tr>
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<span style="font-family: inherit; font-size: large;">Steve remarks that although progress has been made, MS activists
are still needed to push for change. “We have come a long way in the past 30+
years, and it is important that we don't stop until MS is cured or at least
treated in a way that disability from MS is avoided.” Spoken like a true activist!<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">To read more about the program or to order a National MS
Society license plate in New York, please click <span style="color: blue;"><a href="http://www.nationalmssociety.org/chapters/nyh/take-action/ms-license-plate/index.aspx">here.</a></span> <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">Other states also offer a similar license plate program in
conjunction with the National MS Society, so please <a href="http://www.nationalmssociety.org/find-a-chapter/index.aspx">contact</a>
your local chapter to see if you can order a National MS Society license plate
today! </span><o:p></o:p></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com1tag:blogger.com,1999:blog-2810036471450306171.post-22523391023416976762013-05-29T14:29:00.001-04:002013-05-29T14:29:13.089-04:002013 WORLD MS DAY<a href="http://stemcellfoundation.ca/blog/wp-content/uploads/2010/05/WMSDLogo2010_ENwww.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="245" src="http://stemcellfoundation.ca/blog/wp-content/uploads/2010/05/WMSDLogo2010_ENwww.jpg" width="320" /></a><span class="Apple-style-span" style="font-family: inherit; font-size: large;"><span class="Apple-style-span" style="color: #222222;"><span class="Apple-style-span" style="border-collapse: collapse;"><br /></span></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">World MS Day is today, May 29!! World MS Day’s theme highlights young people and MS, the most common neurological disease affecting young people. The campaign looks to bring awareness about MS and how it affects everyday life.</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">This year, people from all over the world are posting their personal motto as part of World MS Day – so please go to <a href="http://mymotto.worldmsday.org/en/whats-your-motto/" target="_blank">My Motto</a></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"> and submit a personal motto that you live by or wisdom for when times are tough. These mottos inspire us all to do more in creating a world free of MS. Events will be taking place in over 60 countries around the world, and the Society has worked closely with colleague organizations in the MS Coalition and MS International Federation.</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">In conjunction with World MS Day, we ask that you urge your Senators to support the United Nations Convention on the Rights of Persons with Disabilities (CRPD) so Americans with disabilities – including young adults and veterans – can travel the world beyond America’s shores. The treaty aims to enhance the rights of persons with disabilities by asserting that they have the same rights as persons without disabilities, similar to the principles of the American with Disabilities Act (ADA).</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">Last December, the Senate failed to ratify the treaty by just five votes. The first step in the renewed ratification process is to have new hearings in the Senate Foreign Relations Committee. </span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><a href="http://capwiz.com/nmss/utr/1/BYVKTCEUEU/LJDHTCEZIP/9616648876%3E" target="_blank">Click here to ask your Senators to support the CRPD</a> and the rights of persons with disabilities around the world – to again pass the CRPD out of the Foreign Relations Committee with bipartisan support! Let’s make our voices heard on such an important day that highlights the need for a world free of MS!</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">To find other ways to get involved on World MS Day, please click </span></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><span class="Apple-style-span" style="font-family: inherit; font-size: large;"><a href="http://www.nationalmssociety.org/get-involved/events/world-ms-day/index.aspx" target="_blank">here</a>. </span></span>MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-54243217225414815742013-05-29T11:46:00.000-04:002013-05-29T11:50:52.234-04:00FEDERAL FRIDAYS<br />
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<span style="font-family: inherit; font-size: large;">Did you know that Memorial
Day – the day we take to honor those who died serving our country in the Armed
Forces – was originally called <a href="http://en.wikipedia.org/wiki/Memorial_Day">Decoration Day</a> to honor
Union and Confederate soldiers who died during the civil war?<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">Be
sure to peruse this entire edition – for the first time I have included a
tidbit about a creative approach by <b>American Samoa</b> to address an access
issue; two tidbits pertaining to <b>Harry S Truman</b>, and under the ACA
Implementation News section, there are some important <b>webinar opportunities</b>
that may be of interest. Enjoy!<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>World
MS Day – what’s your motto?</u></b> May 29 is <a href="http://mymotto.worldmsday.org/en">World MS Day</a> and the Society is
supporting this awareness campaign through our website, social media, email,
chapter activities, media outreach, and more. This year people are
posting their personal motto as part of World MS Day – it’s quick and easy so
please go to <a href="http://mymotto.worldmsday.org/en/whats-your-motto/">My
Motto</a> and submit a personal motto that you live by. These mottos inspire us
all to do more in creating a world free of MS. This of course is a
worldwide effort and we’ve been engaged with colleague organizations in the MS
Coalition as well as the MS International Federation.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Long-Term
Services & Supports Petition</u></b>. The Society is pushing out <a href="http://ntl.ms/LTSSpetition2">an online petition</a> asking Congress to
create more flexible, affordable long-term services and supports (LTSS) options
for Americans. Once 25,000 people have signed the petition, it will be
delivered to Congress and hopefully launch discussion and action. Be sure
to check out the <a href="http://blog.nationalmssociety.org/2013/05/planning-for-long-term-taking-action.html">great
blog post by Michael Ogg</a>, an activist from New Jersey with primary
progressive MS who is concerned about access to LTSS, and of course sign the
petition yourself!<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Debt
Ceiling fight looms</u></b>. Increased tax revenues and a payment from
Fannie Mae/Freddie Mac has provided a slight cushion but Congress will still
need to take action sometime this fall to increase the federal debt limit in
order to avoid default. Speaker Boehner is trying to corral his caucus
for a <a href="http://thehill.com/blogs/on-the-money/budget/300035-boehner-pleads-for-gop-unity-on-debt-ceiling">unified
approach</a>, lest he have to rely on Minority Leader Pelosi to deliver them.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Federal
Budget Update</u></b>.
I was going to leave this blank but thought that would be too sarcastic.
There really has been no movement – Sen. John McCain has expressed his dismay
that his own party is <a href="http://www.politico.com/story/2013/05/senate-gop-budget-91699.html?hp=r9">putting
up roadblocks</a> to having a conference committee to reconcile the House and
Senate budgets, and freshman Sen. Ted Cruz announcing that he <a href="http://www.politico.com/story/2013/05/cruz-i-dont-trust-the-republicans-91753.html?hp=r9">doesn’t
trust</a> his own party in those negotiations. Meanwhile there are <a href="http://www.nytimes.com/2013/05/15/us/politics/for-gop-incentives-for-budget-deal-with-obama.html?_r=0">some
reasons</a> why getting a budget done this year is attractive (as opposed to
passing another ‘continuing resolution’ to keep funding at current
levels). <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>‘Scandals’.</u></b> Well,
that’s all I need to say – plenty of 24/7 coverage of the various issues out
here. Or you can watch the TV series for a different ‘Scandal’. In
the meantime, if you want a few good chuckles, look at these <a href="http://www.politico.com/story/2013/05/jay-leno-jokes-obama-scandals-91811.html?hp=r6">one-liners</a>
by Jay Leno recently.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Legislative
Update.</u></b>
Click<a href="https://docs.google.com/file/d/0BwDLrxul5MwCXzlwdlBNRlo1ZEE/edit?usp=sharing" target="_blank"> here</a> to find a summary of legislative issues that we provided
recently on a phone call with government relations staff.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Appropriations
Committee Targets.</u></b> Big, <a href="http://www.politico.com/story/2013/05/gop-labor-education-hhs-91514.html#ixzz2TYOF1skJ">significant
cuts</a> are likely for health and human services programs given budget caps –
the cuts could be as much as 20% (and that’s on top of the sequestration cuts
that went into effect March 1). The impact on medical research is shown
in <a href="http://www.faseb.org/Portals/0/PDFs/opa/Sequestration%20factsheet.pdf">this
document</a> which includes the quote “2013 is a bad year to have a good
idea.” One estimate is that NIH could lose nearly $5.4 billion if
something doesn’t give. Here’s a <a href="http://publichealthfunding.org/uploads/House_302(b)_Allocation.pdf">letter</a>
on behalf of over 900 groups highlighting the draconian <!--[if gte vml 1]><v:shapetype
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOzedskptCOxZ7jkHqkFviVBXVkRrgZEe1LMgAxa0KjboYr5Cg1lFAZGK04t6l9sEv9fAvkzmjS8Bdgv1sJzX_f40Toj1qMhKm-zT9eM5ZtB7u3YYprpdPGtbT4_jIWCJ-FQOnG5MamGAf/s1600/1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOzedskptCOxZ7jkHqkFviVBXVkRrgZEe1LMgAxa0KjboYr5Cg1lFAZGK04t6l9sEv9fAvkzmjS8Bdgv1sJzX_f40Toj1qMhKm-zT9eM5ZtB7u3YYprpdPGtbT4_jIWCJ-FQOnG5MamGAf/s1600/1.jpg" /></a><span style="font-family: inherit; font-size: large;"><b><u>Favorite
John Boehner Quote:</u></b> “It is hard to keep 218 frogs in a
wheelbarrow long enough to get a bill passed.” <a href="http://abcnews.go.com/blogs/politics/2012/05/john-boehner-on-gop-house-hard-to-keep-218-frogs-in-a-wheelbarrow/">May
20, 2012 on ABC</a>. <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Limits
of Telemedicine</u></b>.
NPR had a <a href="http://www.npr.org/2013/05/14/183950898/the-promise-and-limitations-of-telemedicine?sc=tw&cc=share">Talk
of the Nation</a> episode talking about the promise and limitations of
telemedicine. One of the guests was Dr. Ray Dorsey who has incorporated
telemedicine as a key component of his medical practice for patients with
Parkinson’s Disease.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRyIR4OXzC_DDp3w4NvxNiBYyvfgc9Hqu_gJtrN2XZAM1mYBSPXlFes1o9vz6VR8YU7J4Ij1-XxnMF3lZTyZf6N9O_HfrjsYNdP3rUxJ8ceosibwQaKwb0WS1WOFDXKufFYMjVx_0A3JHx/s1600/2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="153" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRyIR4OXzC_DDp3w4NvxNiBYyvfgc9Hqu_gJtrN2XZAM1mYBSPXlFes1o9vz6VR8YU7J4Ij1-XxnMF3lZTyZf6N9O_HfrjsYNdP3rUxJ8ceosibwQaKwb0WS1WOFDXKufFYMjVx_0A3JHx/s200/2.jpg" width="200" /></a></div>
<br />
<span style="font-family: inherit; font-size: large;"><b><u><br />Truman’s Yacht rusting away</u></b>.
President Harry S Truman used the USS Williamsburg as a floating White House
but now it’s just a <a href="http://worldnews.nbcnews.com/_news/2013/05/15/18269389-from-seagoing-white-house-to-ghost-ship-trumans-yacht-rusts-far-from-home?lite">rusting
ghost ship</a> in Italy hoping for new life.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u><br />Speaking
of the Truman Era . . .</u></b> Truman was one in a long line of presidents
who attempted to reform the American health care system. At the time the
American Medical Association was one of the biggest opponents to change. <a href="http://www.minnpost.com/second-opinion/2013/05/how-british-painting-helped-thwart-universal-health-care-us?utm_source=MinnPost+e-mail+newsletters&utm_campaign=f920bcada4-5_7_2013_Daily_Newsletter5_7_2013&utm_medium=email&utm_term=0_3631302e9c-f920bcada4-123372498">This
story</a> talks about how a British painting played a critical role in AMA’s
successful efforts to thwart universal health care in the U.S.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>American
Samoa’s Frequent Flyers.</u></b> The government of American Somoa
has established a frequent flyer account to <a href="http://www.washingtonpost.com/business/american-samoa-to-keep-frequent-flier-miles-of-government-travelers-use-for-sick-students/2013/05/22/febab5c2-c349-11e2-9642-a56177f1cdf7_story.html">deposit
all frequent flyer miles</a> of government employees traveling on government
business. Those miles will then be used to help impoverished medical
patients and students travel off the islands when necessary to access care.
<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u><span style="color: #f79646;">Health
Reform Implementation News:</span></u></b><o:p></o:p></span></div>
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<br />
<ul><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6nQSBm5WjZl3iQZXF4tzwqcJJmUKytn4Kcx-gWpnxlCB6pYxLVEmT3hiW893Co1zYdDcJV2KyQC8DKfSJZLlpJ3DB6mAGSfvQerJsEFlZFtZWqdwMx830-3MfEuZDLW1s_BJdlRCsyWWo/s1600/3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6nQSBm5WjZl3iQZXF4tzwqcJJmUKytn4Kcx-gWpnxlCB6pYxLVEmT3hiW893Co1zYdDcJV2KyQC8DKfSJZLlpJ3DB6mAGSfvQerJsEFlZFtZWqdwMx830-3MfEuZDLW1s_BJdlRCsyWWo/s1600/3.jpg" /></span></a>
<li><span style="font-family: inherit; font-size: large;"> <b>Gettin’ Ready!</b> Since our
last ACA News, there’s been loads of ACA implementation activity on both the
federal and state government levels. It’s all about getting ready for the
October 1<sup>st</sup> launch of the Health Insurance Marketplaces (aka
Exchanges) and the <a href="http://www.healthcare.gov/law/timeline/index.html">major
reforms</a> coming in January. Outreach and education opportunities
are ramping up, health insurers are lining up to get their new health insurance
policies certified, and really smart people are trying really hard to make
complicated stuff sound simple. </span></li>
</ul>
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<ul><span style="font-family: inherit; font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy6Mh0mmY7j6zFud8pf3gBL1hHUD5ZRDLG5FAuu6HPFojFOLbE92gnnbZnp1T2gGvo-WR9M8vliW5pE6X2uJg5jZuJnwNEu-eh4nr70pGw7HsHJ5-QmZCzMsRJ-N6hyphenhyphenIwi4CC0i2nhhdfT/s1600/4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy6Mh0mmY7j6zFud8pf3gBL1hHUD5ZRDLG5FAuu6HPFojFOLbE92gnnbZnp1T2gGvo-WR9M8vliW5pE6X2uJg5jZuJnwNEu-eh4nr70pGw7HsHJ5-QmZCzMsRJ-N6hyphenhyphenIwi4CC0i2nhhdfT/s1600/4.jpg" /></a>
<li><b style="font-weight: bold;">HHS Explains it all to you. </b><b> </b>HHS is
offering <i>two free webinars</i> (a “101” and “advanced”) on the
Marketplaces in June and July. Registration is required, and the
promise to add more dates if the demand is high. Click <a href="https://docs.google.com/file/d/0BwDLrxul5MwCckVXdUpfVTlkMTQ/edit?usp=sharing" target="_blank">here</a> for
dates and links to registration. Please circulate, and note the free e-mail
sign-up on bottom of the page.</li>
</span></ul>
<span style="font-family: inherit; font-size: large;"><o:p></o:p></span></div>
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<ul>
<li><span style="font-family: inherit; font-size: large;"><b>BIG Changes for
PCIPs: </b> To
provide desperately needed health insurance coverage to people that had been
denied coverage by insurers due to their pre-existing condition, the ACA
established a stopgap coverage program known as the Pre-Existing Condition
Insurance Plan (PCIP). Funded entirely through federal dollars, PCIPs
were up and running in every state within a few months after the ACA was
enacted in 2010, with the goal of providing temporary coverage for the
un-insured in poor health until more options were available in 2014.
Twenty-seven states chose to run their own PCIP, and others offered
coverage through a federally-administered PCIP.</span></li>
</ul>
<div>
<span style="font-size: large;"><br /></span></div>
<span style="font-family: inherit; font-size: large;"> </span><span style="font-family: inherit; font-size: large;">As many anticipated however, the $5B
allocated for the PCIPs may not be enough, and the funds may run out before the
PCIPs’ scheduled termination at the end of the year. In February,
HHS announced that the PCIPs could no longer accept new enrollees and other
significant changes to federal PCIP coverage were made. In recent weeks,
to further reduce costs and preserve the last remaining PCIP funds, HHS
notified the state-run PCIPs that the remaining funds would be capped: the
states could reduce coverage in their own programs, or switch their enrollees
to the federal PCIP. </span><a href="http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/" style="font-family: inherit; font-size: x-large;">At
last count</a><span style="font-family: inherit; font-size: large;">, 10 states planned to maintain their own PCIPs, while enrollees
in 17 other states’ programs </span><span style="font-family: inherit; font-size: large;">will be notified their coverage will be
switched to the federal PCIP for the </span><span style="font-family: inherit; font-size: large;">remainder of the year.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJC17XI8bvh3fJQMjBflCqG2I1lNqjohL5FmWyj71Lzy5PaXqa58p0icEtkwV61ozlmyYJF1iTNrQ7aoYhzhOXL4TehSo7oFPFJHJY690mFuPumTpqtWYXjwYQAq3X1odoqiVTNpDEgnwH/s1600/5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJC17XI8bvh3fJQMjBflCqG2I1lNqjohL5FmWyj71Lzy5PaXqa58p0icEtkwV61ozlmyYJF1iTNrQ7aoYhzhOXL4TehSo7oFPFJHJY690mFuPumTpqtWYXjwYQAq3X1odoqiVTNpDEgnwH/s1600/5.jpg" /></span></a></div>
<span style="font-family: inherit; font-size: large;"><b><i>NOTE: Changes
to the PCIPs could result in increased costs, the loss of benefits or coverage
for some enrollees with MS. Anyone with MS that is negatively
impacted by these changes can speak with a MS Navigator (1800-FIGHT-MS) for
help accessing Patient Assistance Programs and other support until their new
coverage takes effect.
<o:p></o:p></i></b></span></div>
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<ul>
<li><span style="font-family: inherit; font-size: large;"><b>Let’s make a
Deal: </b> <a href="http://capsules.kaiserhealthnews.org/index.php/2013/05/17-insurers-want-to-play-ball-in-colorados-marketplace/">News</a>
is trickling in from the states about their negotiations with insurance
companies that want to sell policies through <a href="http://www.bizjournals.com/washington/blog/2013/05/insurers-propose-nearly-300-plans-for.html?page=all">the
Exchanges</a>. Because all health plans must meet specific standards to
be deemed ‘Qualified Health Plans’, the process of reviewing and certifying
health plans is providing the first look at what policies sold through the
Exchanges will actually look like, and <a href="http://www.oregonlive.com/health/index.ssf/2013/05/oregons_low_health_premium_fil.html#incart_river">what
they’ll cost.</a> Inquiring minds that want to know more about states’
efforts to certify health plans may want to check out NASHP’s free <a href="http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/">90
minute webinar</a> about Qualified Health Plans <b>on Wednesday, May 29 at 2:30
EST</b>. If you want to understand more about how the
Affordable Care Act will make health insurers more accountable for the premiums
they charge, read up on the <a href="http://www.healthcare.gov/law/features/costs/rate-review/">new process
for reviewing insurance rates</a>. </span></li>
</ul>
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<br />
<ul>
<li><span style="font-family: inherit; font-size: large;"><b>Feds Make It
Easier For States To Enroll Poor Under Health Law: </b>The Obama
administration informed state officials that they could <a href="http://www.kaiserhealthnews.org/Stories/2013/May/18/states-medicaid-enrollment-marketplaces.aspx">simplify
Medicaid</a> to handle the barrage of potentially millions of new enrollees
next year when the healthcare law expands coverage. Medicaid Director Cindy
Mann wrote a <a href="http://www.medicaid.gov/Federal-Policy-Guidance/downloads/SHO-13-003.pdf">letter
to state officials</a> outlining several ways states could streamline
enrollment for adults, including using data people have already submitted to
qualify for food stamps and allowing adults to remain enrolled in the program
for up to a year, even if their income changes. Policy experts said letting
adults stay in the program when their income changes is a "big deal,"
because it would reduce the large number of people churning in and out of the
program and thereby affecting their ability to get care.</span></li>
</ul>
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<span style="font-family: inherit; font-size: large;">That’s
it for now. We hope you had an enjoyable Memorial Day, remembering those who
gave their lives in service of their country. And of course our thoughts
are with so many people who lost loved ones in Oklahoma as a result
of the tornadoes that hit the Moore, OK area.</span><span style="font-family: 'Myriad Web', sans-serif; font-size: small;"><o:p></o:p></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-74305643920432250732013-05-24T11:44:00.002-04:002013-05-24T11:44:49.890-04:00HOUSE MAJORITY LEADER HOSTS PATIENT ADVOCACY GROUPS<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJE7sFQVKPXgBhuACazG4KPNcFPt9Mi67y7IyPtO_IYrv98aRQxC56N8IUSjVTcH0hRr7p9UQFY5dBkfrodn3kUgm9s6ZPz9BHu6PMTctn6FgKhV55oMcf9-LqYefPm9t5NJkStd00X17O/s1600/cantor1.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJE7sFQVKPXgBhuACazG4KPNcFPt9Mi67y7IyPtO_IYrv98aRQxC56N8IUSjVTcH0hRr7p9UQFY5dBkfrodn3kUgm9s6ZPz9BHu6PMTctn6FgKhV55oMcf9-LqYefPm9t5NJkStd00X17O/s320/cantor1.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: large;">MS activists from Virginia attend lunch with House Majority Leader Eric Cantor (VA-7)</span></td></tr>
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<span style="font-family: inherit; font-size: large;">On May 8<sup>th</sup>, House Majority Leader Eric Cantor
(VA-7) hosted a lunch in the Library of Congress to bring together
Virginia-based patient advocacy groups and discuss the importance of medical
research. Approximately two-dozen activists attended the event, including four
MS activists from Virginia. Sarah Keitt, one MS activist and a person living
with MS who was in attendance, described the event as “a unique opportunity for
health advocates to educate Congressman Cantor on medical research issues that
are important to our community. The event helped me realize that we cannot be
passive when it comes to protecting medical research funding.” Medical research
funding at the National Institutes of Health (NIH) and through the
Congressionally Directed Medical Research Programs (CDMRP) has been and remains
a top priority for the National MS Society.<o:p></o:p></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGoOMoH0Lh7QoFVdQ2_lw_PCUxlTknEUcCM0c3yZf22PfPZh2jyumXxoEojnDWhAECM9pONnwFI7XKVpJilColD1vKZj0aW60vlOVSEarkCp33AIOd3d156S_7UPd4qXaIxZHDfl9nDZYL/s1600/cantor2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGoOMoH0Lh7QoFVdQ2_lw_PCUxlTknEUcCM0c3yZf22PfPZh2jyumXxoEojnDWhAECM9pONnwFI7XKVpJilColD1vKZj0aW60vlOVSEarkCp33AIOd3d156S_7UPd4qXaIxZHDfl9nDZYL/s320/cantor2.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit; font-size: large;">Majority Leader Cantor addresses Virginia-based activists over lunch</span></td></tr>
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<span style="font-family: inherit; font-size: large;">With activists from a number of disease groups filling the
room, Cantor, who was joined by his senior staff, spoke for roughly twenty
minutes on his support for medical research, the importance of innovation, and
the critical roles that the NIH and the Food and Drug Administration (FDA) play
in advancing medical research and finding cures. At one point, Cantor declared,
“There is probably no higher priority after national security than finding
cures for diseases.”</span></div>
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<span style="font-family: inherit; font-size: large;">Sarah asked Cantor the first question—if and how, was he
concerned about the effects of the sequester on NIH funding? Cantor responded with
concern that underfunding future innovative projects could create a gap in
medical research advancements. As Sarah points out, “people should pay close
attention to all future budget debates and contact their legislators to let
them know about the important, lifesaving work being conducted by NIH-funded
researchers across the country.” Thank you to the MS activists from Virginia
who attended the event with Majority Leader Cantor and to MS activists across
the country for making sure your legislators keep medical research a priority!</span><o:p></o:p></div>
<br />
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-2581389919039703892013-05-21T13:27:00.001-04:002013-05-21T13:27:53.612-04:00PLANNING FOR THE LONG TERM: TAKING ACTION TODAY<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkq26i7AkoHE5kz1-gicPrRk41IZzf-ytr-ZtmBGEILRWna825C_-k5RrPU_aR_SYhkyL0yCcrSq1qsfRpSzmt51syczu7TMNl-bJw1Bkr6zfxFFOru7W552gsga8be9U8eEqpaEZOLO9a/s1600/michael+ogg.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkq26i7AkoHE5kz1-gicPrRk41IZzf-ytr-ZtmBGEILRWna825C_-k5RrPU_aR_SYhkyL0yCcrSq1qsfRpSzmt51syczu7TMNl-bJw1Bkr6zfxFFOru7W552gsga8be9U8eEqpaEZOLO9a/s1600/michael+ogg.jpg" ya="true" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Michael Ogg, MS Activist, New Jersey</td></tr>
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<span style="color: #222222; font-family: inherit; font-size: large; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';">I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm. To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.</span></div>
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<br /><span style="font-family: inherit; font-size: large;"></span></div>
<span style="font-family: inherit; font-size: large;"></span><span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><div class="MsoNormal" style="background: white; line-height: normal; margin: 0in 0in 0pt;">
<span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><span style="font-family: inherit;"><span style="font-size: large;">The home aide who arrives first thing in the morning gets me out of bed using the ceiling-mounted overhead lift. She (most but not all home aides are female) then showers me, dresses me, makes and feeds me breakfast. Other aides give me lunch and dinner, wash my clothes, do other errands for me and put me into bed at night. Without the daily help from my home aides, I would have to live in an institution.<o:p></o:p></span></span></span></div>
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<br /><span style="font-family: inherit; font-size: large;"></span></div>
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<span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><span style="font-family: inherit;"><span style="font-size: large;">I was fortunate that through my last employer I had the option to purchase long-term care (LTC) insurance, but like most LTC policies, mine has a lifetime dollar cap. Mine will run out in less than four years. I am 58 years old. Through Social Security Disability Insurance (SSDI) I have been on Medicare for some time – but Medicare does not pay for home aides. For over two years I've been trying to get onto Medicaid which has a very low income eligibility requirement, but covers many aspects of long-term care including home aides. I have now set up a Special Needs Trust (SNT) which is a way of sheltering assets and income for Medicaid purposes. There is not space to go into the details here, but essentially an SNT is a means of deferring bankruptcy until death instead of spending down first in order to receive Medicaid. But it's complicated and there are many restrictions and limitations.<o:p></o:p></span></span></span></div>
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<br /><span style="font-family: inherit; font-size: large;"></span></div>
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<span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><span style="font-family: inherit;"><span style="font-size: large;">It seems that many of the things we’re told to do to be responsible citizens work against us when trying to get Medicaid. In fact, the obstacles to living in one’s own home in the community, which is the stated aim of the Supreme Court decision <b>Olmstead v. LC</b> and most modern policies, are so great that it becomes financially impossible to live in a community – and a nursing home is the only remaining option. If I don’t qualify for Medicaid soon, I will use up all the remaining funds in my LTC policy. I will then have to use the remainder of my savings for long-term care, and then when I run out of money, I will qualify for Medicaid. This is the so-called “Medicaid spend down.” To qualify for Medicaid will make supporting my daughters (ages 16 and 13) very difficult; Medicaid will have a lien on my SNT, and if I am not bankrupt before I die, the lien must repay what was spent on me, leaving no estate for my daughters to inherit.<o:p></o:p></span></span></span></div>
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<br /><span style="font-family: inherit; font-size: large;"></span></div>
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<span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><span style="font-family: inherit;"><span style="font-size: large;">For people with progressive MS, long-term services and supports (LTSS) may be needed for decades after diagnosis. Even for those with the option and ability to afford private LTC insurance, there is no private insurance that I am aware of that would provide the necessary level of support. The costs of LTSS are so high that very few people can afford it on their own. This leaves people like me with the following choices: bankruptcy, nursing home, or both. We as a country simply have to do better. <o:p></o:p></span></span></span></div>
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<span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><span style="font-family: inherit; font-size: large;">Though only an estimated one-fourth of people with MS will need LTSS, many people with primary-progressive MS like me will need it sooner – rather than later – and for a longer period of time. The need for more affordable, flexible LTSS options also impacts millions of other families living with chronic or disabling diseases, not to mention the fact we have an aging society that will require more and more LTSS. Raise your voice as an MS activist and </span><a href="http://ntl.ms/LTSSpetition2"><span style="color: #005ca1; text-decoration: none; text-underline: none;"><span style="font-family: inherit; font-size: large;">sign this online petition</span></span></a><span style="font-family: inherit;"><span style="font-size: large;"> to remind Congress to address LTSS and create more realistic long-term care options. I’m proud to say I’ve already signed.<o:p></o:p></span></span></span></div>
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<i><span style="color: #222222; font-family: inherit; font-size: large; mso-bidi-font-family: Verdana; mso-fareast-font-family: 'Times New Roman';">A former professor and researcher in physics and software engineering at major U.S. and Canadian universities, employee at Bell Labs and Chief Technology Officer at a New Jersey start-up organization, Dr. Michael Ogg was diagnosed with multiple sclerosis in 1997. Since then, he’s become an MS activist for improved accessibility and ADA compliance, active volunteer support group leader, speaker at high-profile special events, and published author. His essay entitled “Running Out of Time, Money and Independence?” appeared in the journal Health Affairs in January of 2011 and received the 2011 Best of Award in Family Caregiving by the Family Caregiver Alliance; the essay described his life at home with a severe disability and was also covered by The New York Times. His “Hard Lessons from a Long Hospital Stay” essay – focused on issues affecting people with physical disabilities during hospitalization – was published in the April 2012 edition of the American Journal of Nursing. </span></i><span style="color: #222222; font-family: 'Verdana','sans-serif'; mso-bidi-font-family: 'Times New Roman'; mso-fareast-font-family: 'Times New Roman';"><o:p></o:p></span></div>
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</span><o:p></o:p><span style="font-family: inherit;"></span>MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-39496128044871181732013-05-14T20:54:00.000-04:002013-05-15T07:02:06.210-04:00REPRESENTATIVE FROM PENNSYLVANIA RAISES AWARENESS ABOUT MS AND WALK MS ON THE HOUSE FLOOR<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifGlXfVaJG5bleNUh6kX07h1PQ_rLk2AOVP6ogC3XX-opXwuRK4wGxZNmVgEiRK7KueZgnpmihetUIxn39CqG1Th2q2ukXiWbbwz2hqkD1C06bXUwoBv4ML6Wv7NyPo27LoXQtxnjW0D_3/s1600/263154_10151469457548370_673598292_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="267" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifGlXfVaJG5bleNUh6kX07h1PQ_rLk2AOVP6ogC3XX-opXwuRK4wGxZNmVgEiRK7KueZgnpmihetUIxn39CqG1Th2q2ukXiWbbwz2hqkD1C06bXUwoBv4ML6Wv7NyPo27LoXQtxnjW0D_3/s400/263154_10151469457548370_673598292_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">PA Rep. Bizzarro, Team Captain Lori Straub and Rep. Thompson cut the ribbon at Walk MS </td></tr>
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<span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><span class="Apple-style-span" style="font-family: inherit; font-size: large;"> </span></span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><span class="Apple-style-span" style="font-family: inherit; font-size: large;">U.S. Representative Glenn "GT" Thompson (PA-5) spoke on the House of Representative's floor on May 6, 2013 about his experience at Erie County's Walk MS event. Representative Thompson participated in the event and was a member of Lori and Tommy Straub's "Walk a Myelin My Shoes" Walk MS te</span></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222; font-size: large;">am. </span><br />
<span class="Apple-style-span" style="border-collapse: collapse; color: #222222; font-size: large;"><br /></span>
<span class="Apple-style-span" style="border-collapse: collapse; color: #222222; font-size: large;">In the speech (which can be seen <a href="http://www.c-spanvideo.org/appearance/645932943" target="_blank">here</a>), Representative Thompson remarked on the nationwide presence of Walk MS and thanked Lori and Tommy for extending the invitation to him to join their team.</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><span class="Apple-style-span" style="font-family: inherit; font-size: large;"></span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZAfd7n0jP3rN8Av5rbe5T4043GMXFeueYFMmWuni86cVgZ9JqKZtnZjnctU_ydwnvfYSXqDVog1V3MOCpM99quVFsocLg-7GOFax51-ueis3m1RrKmh8gW48ecsi2xTMknwGE15mQ2sJM/s1600/482565_10151469457493370_1545483089_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZAfd7n0jP3rN8Av5rbe5T4043GMXFeueYFMmWuni86cVgZ9JqKZtnZjnctU_ydwnvfYSXqDVog1V3MOCpM99quVFsocLg-7GOFax51-ueis3m1RrKmh8gW48ecsi2xTMknwGE15mQ2sJM/s400/482565_10151469457493370_1545483089_n.jpg" width="267" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">John Platt and Representative G.T. Thompson in discussion</td></tr>
</tbody></table>
<span class="Apple-style-span" style="font-family: inherit; font-size: large;"><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">In true MS activist form, John Platt of Pennsylvania took the opportunity to discuss the importance of MS research funding through the Congressionally Directed Medical Research (CDMRP) and other priority issues with Representative Thompson at the Walk MS event. John's effort illustrates the need to always be thinking about how to engage and educate a member of Congress about MS and issues important to our community at a moment's notice!</span></span><br />
<span class="Apple-style-span" style="font-family: inherit; font-size: large;"><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">We thank Representative Thompson for raising awareness about multiple sclerosis in the U.S. Congress through his speech on the House floor and for participating in Walk MS! We also thank Lori and Tommy Straub, John Platt and other MS activists for their tireless efforts to make Walk MS such a successful event!</span></span>MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-62723825875920167822013-05-06T10:36:00.000-04:002013-05-06T10:36:11.249-04:00FEDERAL FRIDAYS<!--[if !mso]>
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<span style="font-family: inherit;"><span style="font-size: large;"><span>Congress
is out of session this week so DC is pretty quiet however we do have some good
news in the first item below about CDMRP!</span></span></span></div>
<span style="font-family: inherit;"><span style="font-size: large;">
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<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span>Our
team has been on the Hill the past couple of weeks with our partners in
meetings with freshman and sophomore members of the House, highlighting the
importance of health-related funding and the critical need for a vibrant and
fully funded Food and Drug Administration so that new therapies and medical
devices don’t linger in a backlog. </span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span>CDMRP
<i>Success!</i></span></u></b><span>
While we continue to be concerned about the impact sequestration will have on
the MS Congressionally Directed Medical Research Program (CDMRP), we received
word recently that the funding level approved for FY 2013 was what we had been
championing: <b>$5 million</b>. That’s an <b><i>increase of $1.2 million over FY 2012</i></b><span style="color: #e46c0a;"> </span>which is quite a feat in this budget
climate! We know the $5 million will likely get shaved a bit with
sequestration, but it’s great that we are starting at a higher number than the
previous year. This success would not have occurred but for the advocacy
of MS Activists around the country, so a huge thank you and congrats!</span></span></span></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><div align="center" class="MsoNormal" style="text-align: center;">
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</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span>CDMRP
embraces social media.</span></u></b><span> You can now follow CDMRP on twitter <a href="http://www.twitter.com/cdmrp">@CDMRP</a> and it now also has a <a href="http://www.youtube.com/user/CDMRP">YouTube Channel</a>.</span></span></span></div>
<span style="font-family: inherit;"><span style="font-size: large;">
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<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNbnpfQiTlkpzr_DbRz2j15D58xoOrkhqJvEhzIn_05L-otQjwZXRMAprTYKHnOQTBlYSgyGXyf-G0uXR6cc6qobTeKoR7eH7axqlw27niH41JMKFbQVHjIopWYX1Jq5HsfALcfZHKmh-y/s1600/1.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNbnpfQiTlkpzr_DbRz2j15D58xoOrkhqJvEhzIn_05L-otQjwZXRMAprTYKHnOQTBlYSgyGXyf-G0uXR6cc6qobTeKoR7eH7axqlw27niH41JMKFbQVHjIopWYX1Jq5HsfALcfZHKmh-y/s1600/1.png" /></a><span style="font-family: inherit;"><span style="font-size: large;"><b><u><span>FDA Launches
Patient Site</span></u></b><span>.
The Food and Drug Administration recently launched the new <a href="http://www.blogger.com/PatientNetwork.FDA.gov">Patient Network</a> site. It was built from
the ground up with patients in mind, and is independent of the main FDA web
site. The agency engaged patients in the development of the site,
conducting focus groups and usability testing. </span></span></span></div>
<span style="font-family: inherit;"><span style="font-size: large;">
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<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span>R
& D to take a $9.3 billion hit</span></u></b><span>. According to the American
Association for the Advancement of Science, the government is set to decrease
funding for research and development by a net <a href="http://www.huffingtonpost.com/2013/05/02/sequester-impact-medical-research_n_3203089.html?1367525608">$9.3
billion</a> this fiscal year alone. The cuts will come from the Department of
Defense ($6.4 billion), the National Institutes of Health ($1.5 billion), NASA
($749 million), the Department of Energy ($479 million) and the National
Science Foundation ($227 million).</span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Sequester
Victors</span></u></b><span>.
Everyone probably knows by now that Congress passed a bill, signed by the
President, to allow a shift of funds at FAA to resolve the ‘crisis’ that caused
thousands of air travel delays. Now <a href="http://www.politico.com/story/2013/05/sequestration-fixes-faa-victors-90836.html">others
are lining up</a> hoping for their own sequester ‘fix.’</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;">
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Pricing
Transparency</span></u></b><span>.
A recent article highlights one area in health care that is drawing bi-partisan
support: <a href="http://www.commonwealthfund.org/Newsletters/Washington-Health-Policy-in-Review/2013/Apr/Apr-29-2013/Pricing-Transparency-Draws-Bipartisan-Interest.aspx?omnicid=16">pricing
transparency</a>. The piece notes an Institute of Medicine study from
2012 suggesting that 30 cents of every $1 is wasted in health care.</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv03LYLf1LDTru-3O-mjsaqYHeZCXOZ9vY-lv0q5F-QCjfxc8YS0-5LjZBsI0l2nU9hvoVlvJYtlZfmumRFQLtjg3CwsKDxAdICH2bzcPYHoVONDjvcfC5QD1XRQTCqmNpgikkktTwH5lA/s1600/2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="57" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhv03LYLf1LDTru-3O-mjsaqYHeZCXOZ9vY-lv0q5F-QCjfxc8YS0-5LjZBsI0l2nU9hvoVlvJYtlZfmumRFQLtjg3CwsKDxAdICH2bzcPYHoVONDjvcfC5QD1XRQTCqmNpgikkktTwH5lA/s200/2.jpg" width="200" /></a><span> </span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><span style="font-size: large;"><span style="font-family: inherit;"><b><u>Long-Term
Care Petition</u></b>.
<a href="http://www.advanceclass.org/">Advance CLASS</a> has launched a
petition on change.org calling on Congress to create broader access and
flexible and more affordable long-term services and supports options. You
can sign the petition <a href="https://www.change.org/petitions/u-s-congress-address-financing-for-long-term-services-and-supports?utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition">here</a>.</span></span><br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Airplane
Access Petition</span></u></b><span>.
There is another <a href="http://www.thepetitionsite.com/331/437/242/accessible-airlines-proposal-improving-accessibility/">petition</a>
calling for airline accessibility for the approximately 1.5 million Americans
who are wheelchair bound. You can <a href="http://www.thepetitionsite.com/331/437/242/accessible-airlines-proposal-improving-accessibility/">sign
here</a> and pass along to others.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;">
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<span style="font-size: large;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguINmOFWw02P3k17CgwjIqLLh79GC8AwgUCUqKjl3b4IWHnoLtWSNhwyQPaSJausdzN4dG2KcV8cOhBmjTTYOhIGqSqjgpg7BSAkxq6vgv7WrHD8zG5yXS8n5OBZvr9GvBGTL7gQm2YHBV/s1600/3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguINmOFWw02P3k17CgwjIqLLh79GC8AwgUCUqKjl3b4IWHnoLtWSNhwyQPaSJausdzN4dG2KcV8cOhBmjTTYOhIGqSqjgpg7BSAkxq6vgv7WrHD8zG5yXS8n5OBZvr9GvBGTL7gQm2YHBV/s200/3.jpg" width="160" /></a><b><u><span>Road Bumps for Obamacare?</span></u></b><span> Well it
seems pretty fashionable lately for <a href="http://www.politico.com/story/2013/04/obamacare-democrats-2014-90780.html">Ds</a>
and Rs to take <a href="http://www.politico.com/story/2013/04/obamacare-20-rocky-like-10-90692.html#ixzz2RmsIahQ2">cracks</a>
at the Affordable Care Act. It’s certainly a <a href="http://www.npr.org/2013/05/03/180755026/political-battle-over-health-law-starts-next-chapter">complex
law</a> with a lot of moving parts and Society staff continue to actively
engage in implementation efforts to best position people living with MS.
Even Sen. Maj. Ldr. <a href="http://www.washingtonpost.com/blogs/post-politics/wp/2013/05/02/harry-reid-concerned-about-obamacare-implementation/">Harry
Reid</a> has expressed concerns. There was a <a href="http://www.npr.org/2013/05/03/180755028/congress-staffers-caught-up-in-health-acts-sticky-political-situation">recent
spat</a> over supposed efforts to <a href="http://www.politico.com/story/2013/04/obamacare-exemption-lawmakers-aides-90610.html">exempt</a>
Members of Congress and staff and now an effort to require all federal
employees to fall under the ACA. </span></span></span></div>
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</span></span><div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Health
System Data Center</span></u></b><span>. The Commonwealth Fund recently redesigned
its <a href="http://datacenter.commonwealthfund.org/?omnicid=20#ind=1/sc=1">health
system data center</a> where you can interact with data from The Commonwealth
Fund’s state, local, and child health system performance scorecards</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Verify
the news, maybe?</span></u></b><span>
The Drudge Report got caught publishing a satirical story from the <a href="http://dailycurrant.com/">Daily Currant</a> (a satirical news source like
The Onion, just not as funny) about a pizza shop denying NY Mayor Bloomberg a
second slice of pizza in protest of the soda ban. Politico’s Dylan Byers <a href="http://www.politico.com/blogs/media/2013/05/the-daily-currant-isnt-funny-163173.html?hp=r5">highlights</a>
a few other new sources that have done the same.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>New
Study on Medicaid’s Effects on Recipients Gets Plenty of Attention</span></u></b><b><span>.</span></b><span> Everybody who’s
anybody is writing, talking and/or blogging about what this study of Oregon
Medicaid recipients means. Let <a href="http://nation.time.com/2013/05/02/5-things-the-oregon-medicaid-study-tells-us-about-american-health-care/">Time</a>
magazine sum it up for you, then you decide. </span></span></span></div>
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<span style="font-family: inherit;"><span>
<hr align="center" size="3" width="100%" />
</span></span></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-size: large;"><span style="font-family: inherit;"><b><u>Health
Reform Implementation News:</u></b><span></span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><div class="MsoNormal">
<br /></div>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><b><span>Commonwealth
Fund Study Highlights ‘<a href="http://www.commonwealthfund.org/Resources/2013/The-Price-of-Being-Uninsured.aspx">The
Price of Being Un-Insured’</a>: </span></b><span> The Fund’s most recent updates on
trends in coverage reveal nearly half (46%) of adults ages 19 to 64, or an
estimated 84 million people, did not have insurance for the full year or were
underinsured and unprotected from high out-of-pocket costs. Yup – healthcare
reform can’t get here fast enough! </span></span></span></li>
</ul>
<br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><ul><span style="font-size: large;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHTbp5DPXyp-H7_Knxjf-mXj5QNisTpecjcvZomVQ7faRtfkKge6A1V_JJ_67O9niFguaY7bf7Qw1sXnckTyZF2eZnbK66oG7Lnbp4kuNSZDq_DRGodQIfwc-sjEP39sjUNSFKWm47gEI0/s1600/5.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHTbp5DPXyp-H7_Knxjf-mXj5QNisTpecjcvZomVQ7faRtfkKge6A1V_JJ_67O9niFguaY7bf7Qw1sXnckTyZF2eZnbK66oG7Lnbp4kuNSZDq_DRGodQIfwc-sjEP39sjUNSFKWm47gEI0/s1600/5.jpg" /></a></span></span>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><b><span>Shorter is
better!</span></b><span>
The President and Secretary Sebelius want you to get </span><span>excited about their <b><a href="http://www.healthcare.gov/blog/2013/04/marketplace-application.html">new,
and much shorter, application form</a> </b>for health coverage through the
Marketplaces. The application for individuals is three pages, and the
application for families is reduced by two-thirds, to seven pages. When
enrollment begins in October (for coverage starting in January), these will be
the application forms that anyone can use to apply for the new Health Insurance
Marketplace, Medicaid, the Children’s Health Insurance Program, and tax credits
that will help pay for
premiums. </span></span></span></li>
</ul>
<br />
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><ul><span style="font-size: large;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWmvxDdO0z9sNdgQbaLwHOn1I3W_lqEDOQqHsPo_dCiWAao-4gmcobjBD5vOoTsYgdI_EV94RfweKY_vNGd5PxFOcvVAxnCqRg05HakzdqdwEwImLCylmj3rQ_8OwHK3bbFEQ8TrXZvvW_/s1600/6.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWmvxDdO0z9sNdgQbaLwHOn1I3W_lqEDOQqHsPo_dCiWAao-4gmcobjBD5vOoTsYgdI_EV94RfweKY_vNGd5PxFOcvVAxnCqRg05HakzdqdwEwImLCylmj3rQ_8OwHK3bbFEQ8TrXZvvW_/s1600/6.jpg" /></a></span></span>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span></span></span><b><span>Some States Push Back Against ACA’s <a href="http://www.kaiserhealthnews.org/Stories/2013/April/30/California-tobacco-rating.aspx">Higher
Premium for Smokers<span style="font-weight: normal;">: </span></a></span></b><span> California
could join Massachusetts, Vermont, Rhode Island and the District of
Columbia in making sure smokers aren't charged more under the new federal
law. </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><span style="font-size: large;"><span style="font-family: inherit;">
</span></span><ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span></span><b><span>Kaiser Health
News’</span></b><span>
<b>‘Insuring Your Health’ Column</b> features answers to <b><a href="http://www.kaiserhealthnews.org/Features/Insuring-Your-Health/2013/043013-Michelle-Andrews-readers-questions-on-exchange.aspx">questions
submitted by readers</a></b> to help clarify various aspects of healthcare
reform. Here’s a few on employer-sponsored insurance
(ESI). </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><span style="font-size: large;"><span style="font-family: inherit;">
</span></span><ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span></span><b><span>It Ain’t Over
Yet:</span></b><span>
States continue their wrangling over whether to take all available federal
dollars to expand their Medicaid programs. Check out the latest <a href="http://www.kaiserhealthnews.org/Daily-Reports/2013/May/02/medicaid-expansion.aspx?utm_source=khn&utm_medium=internal&utm_campaign=widget">tracking
poll. </a> </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><span style="font-size: large;"><span style="font-family: inherit;">
</span></span><ul><span style="font-size: large;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqLUIZZgAyC-Wh4pI3CfXCJEi_8kDHyTWSXq_YgkVXHj4GLaG-k3X4A3Mr_SBaq2i8BxnkoUQ7x8RiT71_FQLY27t0XsRMgreN0Ey78ll2MiZESS6YYRfPbhZIKAYj7GumaewPg2g9TYOg/s1600/7.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqLUIZZgAyC-Wh4pI3CfXCJEi_8kDHyTWSXq_YgkVXHj4GLaG-k3X4A3Mr_SBaq2i8BxnkoUQ7x8RiT71_FQLY27t0XsRMgreN0Ey78ll2MiZESS6YYRfPbhZIKAYj7GumaewPg2g9TYOg/s1600/7.jpg" /></a></span></span>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><b><span>AARP’s Public
Policy Institute <a href="http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/2013/states-integrating-medicare-and-medicaid-AARP-ppi-health.pdf">survey</a>
</span></b><span>finds<b>
</b>two-thirds of states are integrating care for their “dually eligible”
citizens, of people enrolled in both Medicare and Medicaid. Will the goals of
improving health at lower cost through various care coordination models be
realized? Their <b><a href="http://www.aarp.org/content/dam/aarp/research/public_policy_institute/health/2013/states-integrating-medicare-and-medicaid-AARP-ppi-health.pdf">brief</a></b>
helps explain this major program of the Affordable Care Act, different
approaches among the states, and some of their implications. </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;">
</span></span><div align="center" class="MsoNormal" style="text-align: center;">
<span style="font-family: inherit;"><span>
<hr align="center" size="3" width="100%" />
</span></span></div>
<span style="font-family: "Myriad Web","sans-serif"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: Calibri; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><span style="font-size: large;"><span style="font-family: inherit;">That’s
it for now! Have a great week!!</span></span></span>MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-814743789768698812013-05-02T14:51:00.001-04:002013-05-02T14:51:32.844-04:00MS ACTIVISTS PRESENT REPRESENTATIVE MCMORRIS RODGERS WITH SOCIETY’S 2012 REPRESENTATIVE OF THE YEAR AWARD<br />
<div class="MsoNormal">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPeD2tqLdrV7j_svn6ZJU84rpobyv_GNlDcG26YquP_FuZm2UA1UDG9THAZMBLHgQD044PpytKZs-GVLO0uG3Bnrml2t1hS5CRsetKffIs1PVMIOagnYKLJGHfXJygxR3Qewe6yhhUVJOT/s1600/Picture+1.png" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="298" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPeD2tqLdrV7j_svn6ZJU84rpobyv_GNlDcG26YquP_FuZm2UA1UDG9THAZMBLHgQD044PpytKZs-GVLO0uG3Bnrml2t1hS5CRsetKffIs1PVMIOagnYKLJGHfXJygxR3Qewe6yhhUVJOT/s400/Picture+1.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Nicole Nida, Rep. McMorris Rodgers and Mike Burns in Spokane</td></tr>
</tbody></table>
<span style="font-family: inherit; font-size: large;">MS activists Nicole Nida and Mike Burns recently awarded Representative
Cathy McMorris Rodgers (WA-5) with the 2012 Representative of the Year Award<span class="MsoCommentReference"><span style="line-height: 115%;"> </span></span>in her
district office in Spokane, Washington.
In bestowing its highest honor for public officials, the Society
applauds Representative McMorris Rodgers’s leadership and dedication to issues
that improve the lives of people living with multiple sclerosis and their
families.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;">Representative McMorris Rodgers has supported the National
Neurological Diseases Surveillance System Act and the Lifespan Respite Care
Reauthorization Act. In addition, she
has co-chaired the Bipartisan Congressional Disability Caucus and has been a
member of the Congressional MS Caucus.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;">Representative McMorris Rodgers has a son with a disability and is
recognized as a leader on disability issues by members of both sides of the
political aisle.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;">In addition to presenting Representative McMorris Rodgers with the
Award, Nicole and Mike discussed the importance of preserving funding for
programs and agencies that are important to people with MS, such as the
National Institutes of Health (NIH), Food and Drug Administration (FDA), Congressionally
Directed Medical Research Programs (CDMRP) and the Lifespan Respite
Program. Our MS activists also gave Representative
McMorris Rodgers a copy of the Society’s magazine “Momentum,” the MS connection
Newsletter, and a WALK MS trading card.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;">Serving since 2005, Representative McMorris Rodgers is the Chair
of the Conference, the fourth-highest-ranking position among House Republicans
and is the highest-ranking Republican woman in Congress. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: inherit; font-size: large;">We thank Representative McMorris Rodgers for her continued
leadership on these important issues for people living with MS and their
families. We also thank our MS activists all over the country who continue to
meet with public officials to raise awareness about MS! <o:p></o:p></span></div>
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MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-19997292927314389022013-04-23T12:41:00.003-04:002013-04-29T12:14:19.676-04:00THOUSANDS RALLY TO SUPPORT FEDERALLY FUNDED MEDICAL RESEARCH <br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDoE-zk7NTGiU-sd5lXErlEFHTY9Eny5XvnMlAYJpIBW1PIURbY3uyaV8eqUW-7QFx-A0ZFPGdiPdC8XdX3UWCe3eF0s0QilWYvLGrRZzQHH2SbHt6fbHtr7eqtzND7MV21jjck_pBT4tk/s1600/bari.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDoE-zk7NTGiU-sd5lXErlEFHTY9Eny5XvnMlAYJpIBW1PIURbY3uyaV8eqUW-7QFx-A0ZFPGdiPdC8XdX3UWCe3eF0s0QilWYvLGrRZzQHH2SbHt6fbHtr7eqtzND7MV21jjck_pBT4tk/s400/bari.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MS Activists at the Rally</td></tr>
</tbody></table>
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<span style="font-family: inherit; font-size: large;">On Monday, April 8, thousands of advocates gathered in downtown Washington, D.C. at the Rally for Medical Research which aimed to make medical research a national priority. The National MS Society partnered with about 200 organizations to bring attention to decreased funding for the National Institutes of Health (NIH) in the past years </span><span style="font-family: inherit; font-size: large;">and the effects of sequestration, or automatic spending cuts, which resulted in a $1.6 billion reduction to the NIH budget. The Society regards the NIH as an invaluable partner to finding a treatment for progressive MS, additional therapies for relapsing MS and a potential cure for the disease. Approximately $122 million of FY 2011 NIH appropriated funding was directed to MS-related research.</span></div>
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<span style="font-size: large;">Journalist Cokie Roberts acted as “MC” for the event, which featured numerous political figures, scientists, researchers and patient advocates. Additionally, actress and breast cancer survivor Maura Tierney relayed her story about the impact of research on her life.MS Caucus Co-Chair Representative Chris Van Hollen (MD-8) was one of Members of Congress who attended. Representative Van Hollen, whose district houses the NIH, emphasized the national impact of medical research, remarking, “If we want to be a competitive nation, we need to invest in medical research.”</span></div>
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<tr><td class="tr-caption" style="text-align: center;">MS Caucus Co-Chair Rep. Van Hollen </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Thousands attended the Rally</td></tr>
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<span style="font-family: inherit; font-size: large;">Due to the large number of
attendees and the speakers, the Rally received considerable media attention.
Throughout the day, CNN and 30 news broadcasts reported on the Rally. In
addition, the Rally was extremely popular on social media sites throughout the afternoon. The Twitter
hashtag #RallyMedRes was a top trending topic on Twitter globally, reaching
more than 6,500 tweets from 11:00 A.M. to 12:30 P.M. The National MS
Society’s<a href="https://twitter.com/msactivist" target="_blank"> MS Activist Twitter account</a> “live-tweeted” the event to spread the word
to all of our activists through the social media website.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;">This was a great event and will help drive our advocacy work
this year to ensure that Congress provides significant funding for medical
research in Fiscal Year 2014!</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTVXECQIAvyAoif9GTY07c9ufZlW0skaYIj6eM7w547xLNzgIp9xXllACcckIpxR09E5FWfUiebwoXtqF6w6kLifPiz-icYs6zSzx3SxLxJUJFHTXb8473WtXkrfEH0PaXJrZd9ptP8mM8/s1600/ms+society2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="401" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTVXECQIAvyAoif9GTY07c9ufZlW0skaYIj6eM7w547xLNzgIp9xXllACcckIpxR09E5FWfUiebwoXtqF6w6kLifPiz-icYs6zSzx3SxLxJUJFHTXb8473WtXkrfEH0PaXJrZd9ptP8mM8/s640/ms+society2.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The National MS Society's name appeared on the big screen!</td></tr>
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MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-622427558664216232013-04-22T09:57:00.000-04:002013-04-22T09:57:12.988-04:00<span style="font-family: inherit; font-size: large;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQhqByAmxV5d-4XnNd6NOxAUzOY-LzukH1wXqPjX676dTvfaczsAKBnRtu6qEETLXkdgLOsPrsaseNHOs-O1gldAZtFTu5yZMed_-YJIKS8glLmzNTUbqyQNqtpzRNqQ5h0XhPi0il185_/s1600/2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="155" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQhqByAmxV5d-4XnNd6NOxAUzOY-LzukH1wXqPjX676dTvfaczsAKBnRtu6qEETLXkdgLOsPrsaseNHOs-O1gldAZtFTu5yZMed_-YJIKS8glLmzNTUbqyQNqtpzRNqQ5h0XhPi0il185_/s200/2.jpg" width="200" /></span></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaj1nAijhzF9NmXkZnuwoI04TngB7CW0H9hdbq86BQg_qMSt_dIGR_00xqloYybjVbSnEchjJ9ua9uF2t_x-0hV3__LWD_IOgHBKPSiNXHCSDqKFI6zVYNJz6ZLck6ACPgm8QWpToQyxRj/s1600/1.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="78" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaj1nAijhzF9NmXkZnuwoI04TngB7CW0H9hdbq86BQg_qMSt_dIGR_00xqloYybjVbSnEchjJ9ua9uF2t_x-0hV3__LWD_IOgHBKPSiNXHCSDqKFI6zVYNJz6ZLck6ACPgm8QWpToQyxRj/s200/1.png" width="200" /></span></a><span style="font-family: inherit; font-size: large;"><b><u>This Week’s Events.</u></b> This edition comes
on the heels of some horrific events in America and everyone at the National MS
Society extends their heartfelt thoughts and prayers for everyone impacted by
the bombing at the <a href="http://www.cityofboston.gov/oneboston/home.asp">Boston</a>
Marathon and the massive explosion and devastation in West, Texas. <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Rally for Medical Research.</u></b> The National MS
Society was a sponsor of a very successful rally in Washington earlier this
month, calling on Congress to maintain investment in critical medical
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<span style="font-family: inherit; font-size: large;">research. Cokie Roberts was the emcee and among the speakers was
Congressional MS Caucus Co-Chair Chris Van Hollen (D-MD). <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Obama
Budget</u></b>.
President Obama delivered his long-awaited budget to Congress last week and it
includes many deficit-reduction measures which have certainly stirred things up
in Washington. Here’s an <a href="http://www.politico.com/story/2013/04/budget-winners-losers-show-white-house-priorities-90104.html">article</a>
highlighting its impact on health care, and <a href="http://www.mmm-online.com/obama-budget-would-bleed-pharmas/article/288302/">another</a>
talking about impact on the pharmaceutical industry.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Simpson-Bowles
2.0</u></b>.
Former Sen. Alan Simpson and former Clinton chief of staff Erskine Bowles just
released a <a href="http://thehill.com/blogs/on-the-money/budget/294873-bowles-simpson-release-new-debt-plan">revised
version</a> of their deficit reduction plan. <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Sequestration</u></b>. The across the
board spending cuts are beginning to have an impact, with more to come.
Here is a <a href="http://www.washingtonpost.com/wp-srv/special/politics/sequestration-federal-agency-impact/?hpid=z14">summary
of impact</a> on federal agencies. Remember also that sequestration isn’t
a one-time event. Unless Congress acts, each of the next nine years will
see the remaining cuts – on tap beginning October 1, 2013 is another $109
billion in automatic cuts.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Fiscal
Gap: $211 Trillion</u></b>. This is a term I recently read in <a href="http://www.minnpost.com/macro-micro-minnesota/2013/04/sequestration-deficit-debt-our-real-problem-future-fiscal-gap?utm_source=MinnPost+e-mail+newsletters&utm_campaign=b28bf3e693-4_4_2013_Daily_Newsletter4_4_2013&utm_medium=email">this
article</a> suggesting that neither the deficit nor the debt are significant
when you consider the fiscal ‘gap’ – the amount of financial commitments of the
federal government minus the amount of revenue to pay for them in the coming
years. <o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Reconciliation
after all?</u></b>
In previous Federal Fridays I talked about the House and Senate having passed
budget resolutions but that it was more for show than anything (and to get
paid) however, unexpectedly, Senator Patty Murray and Congressman Paul Ryan
announced their intention to have a conference committee and work to reconcile
the very different budget resolutions. The Administration is <a href="http://thehill.com/blogs/on-the-money/budget/293315-white-house-backs-budget-conference-as-path-forward-on-debt">supportive</a>
of this as well. Going to conference is what should happen next but
recent history has shown a different path. And while this sounds
positive, there’s always more to the story as highlighted in this <a href="http://www.washingtonpost.com/politics/congress/after-demanding-budget-debate-gop-resists-naming-negotiators-for-endgame-talks/2013/04/16/29d9d4ee-a6db-11e2-9e1c-bb0fb0c2edd9_story.html">Washington
Post</a> article.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Doc
Shortage Confirmed</u></b>. The American Academy of Neurology conducted a study to
measure how significant the neurologist shortage is and just <a href="http://www.newswise.com/articles/the-doctor-won-t-see-you-now-study-us-facing-a-neurologist-shortage">published</a>
the results. The US could use 11 percent more neurologists to meet
current needs. By 2025, that number will grow to 19 percent. Another <a href="http://www.everydayhealth.com/multiple-sclerosis/neurologist-shortage-ms-patients.aspx">article</a>
specifically address the impact on MS.<o:p></o:p></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Providers
want faster payment system change</u></b>. Payment for treatment as </span><span style="font-size: large;">a whole, rather than by fee-for-service,
<a href="http://www.usatoday.com/story/news/politics/2013/04/14/health-care-providers-pushing-faster-payment-reforms/2074715/">is
the goal</a>, and many providers want to move more quickly to that model of
care/payment. <o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Electronic
Medical Records</u></b>.
The Obama Administration is making <a href="http://thehill.com/blogs/regwatch/healthcare/292449-administration-pushes-toward-electronic-medical-records">another
push</a>, hoping to help streamline the process.<o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj__AuK6A0gnrmEINC0JUy_WWW1XkVpzGzltCwTulKqfuZnaHjD-5pw9xtogWQbGNGmmXEj8AzjFLsJygBBQfD3i8MvrgxIkq3XDGSlNz2tPiNe1dXQQ-fYjXojIgGeCG1VyYRHVfK06Kzr/s1600/4.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj__AuK6A0gnrmEINC0JUy_WWW1XkVpzGzltCwTulKqfuZnaHjD-5pw9xtogWQbGNGmmXEj8AzjFLsJygBBQfD3i8MvrgxIkq3XDGSlNz2tPiNe1dXQQ-fYjXojIgGeCG1VyYRHVfK06Kzr/s320/4.jpg" width="252" /></span></a><span style="font-family: inherit; font-size: large;"><b><u>Cost
of Health Care in Your State</u></b>. The Wall Street Journal put out <a href="http://online.wsj.com/article/SB10001424127887323884304578328173966380066.html?KEYWORDS=health+overhaul">a
piece</a> with a state by state breakdown of what health care costs. <span lang="EN"><o:p></o:p></span></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Human
Genome Project at 10</u></b>. It has been 10 years since this ambitious project was
completed. <a href="http://www.nytimes.com/2013/04/16/science/the-human-genome-project-then-and-now.html?ref=science&_r=0">Here’s
a piece</a> about what it accomplished, and what comes next.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>20
Best Small Towns to Visit</u></b>. Smithsonian Magazine published a list of
their <a href="http://www.smithsonianmag.com/travel/The-20-Best-Small-Towns-to-Visit-in-2013-196855051.html">top
20</a> picks of small towns to visit. Just another reminder of the richness
we have within our borders.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>Other ‘livable’ planets ID’d</u></b>. NASA has apparently
located two planets that appear to be able to sustain life – <a href="http://www.bostonglobe.com/news/science/2013/04/18/nasa-sees-distant-planets-that-seem-ideal-for-life/su8PbuFiZW12gS74Ex7A4L/story.html">interesting
read</a>!<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u>MS
Coalition Partner a finalist</u></b>! <a href="http://www.acceleratedcure.org/">Accelerated
Cures Project for MS</a>, a member of the <a href="http://ms-coalition.org/cms/index.php">MS Coalition</a>, has been named a
finalist in the 2013 New England Innovation Awards – Congratulations!
Past winners include Staples, Ben & Jerry’s, Genzyme, Nantucket Nectars,
and iRobot.<o:p></o:p></span></div>
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<span style="font-family: inherit; font-size: large;"><b><u><span style="color: #f79646;">Health
Reform Implementation News:</span></u></b><b><u><o:p></o:p></u></b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWCOaLyKQdiaZYGYCY1uJ0l5iaRzL3VUvbu3IIcDwcdz9Z8kpYuc6t2fG9cxgu2shYQXfFlZIA0XcnX2Id0XOerQdzSd4Eje9XqwmoHIS4oqI_q873DCO0sNocwGVBLUTed95L31JCVa7e/s1600/6.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWCOaLyKQdiaZYGYCY1uJ0l5iaRzL3VUvbu3IIcDwcdz9Z8kpYuc6t2fG9cxgu2shYQXfFlZIA0XcnX2Id0XOerQdzSd4Eje9XqwmoHIS4oqI_q873DCO0sNocwGVBLUTed95L31JCVa7e/s1600/6.jpg" /></span></a>
<li><span style="font-family: inherit; font-size: large;"><span style="text-indent: -0.25in;"> </span><b style="text-indent: -0.25in;">“I don’t’ get it.” </b><span style="text-indent: -0.25in;">Two-thirds of Americans say
they still don’t have enough information about healthcare reform to understand
what they need to know or do. Kaiser’s most recent public </span><span style="text-indent: -0.25in;">opinion </span><a href="http://www.kff.org/kaiserpolls/upload/8425-F.pdf" style="text-indent: -0.25in;">poll</a><span style="text-indent: -0.25in;"> highlights the
need for more public education and outreach. So, how what? Keep
reading to learn about plans for Consumer Assistance programs in the next
section. </span></span></li>
</ul>
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<li><span style="font-family: inherit; font-size: large;"><span style="text-indent: -0.25in;"> </span><b style="text-indent: -0.25in;">Who Does What? Consumer
Assistance Takes Many Forms: </b><span style="text-indent: -0.25in;">There are many different types of Consumer
Assistance programs now being organized to help consumers learn about their
health coverage options through the health insurance marketplaces (aka
‘exchanges’) starting in October. But they are all a little
different, so here’s a few basic distinction between </span><a href="http://files.www.enrollamerica.org/best-practices-institute/enroll-america-publications/Enrollment_Assisters_Fact_Sheet.pdf" style="text-indent: -0.25in;">Navigators
and In-Person Assistance Programs</a><span style="text-indent: -0.25in;"> from Enroll America to help keep them
straight. Since the feds issued their long-awaited plans for the
navigator grant program for services in the 34 states that will either use the
Federally-Facilitated Exchange (FFE) or a Federal Partnership Exchange,
navigators and other types of consumer assistance have become a very hot topic.
To learn more, check out this excellent </span><a href="http://www.kff.org/healthreform/video_consumers_navigate_options_041813.cfm" style="text-indent: -0.25in;">video
of a panel discussion</a><span style="text-indent: -0.25in;"> among a group of experts.</span></span></li>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5DLYYCV4r4L4MPORsCVUhy1OHRShLKZlVc791NZxE4dp7xsr-iXgeeoWzca0WZiYQbweE7S3Fkf2_bdPAM7p1niw4H3VPzurcVqUNwpUQPnErkMiy-SGbnELaKiem64-9D5zKuCrNYwJt/s1600/7.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="153" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5DLYYCV4r4L4MPORsCVUhy1OHRShLKZlVc791NZxE4dp7xsr-iXgeeoWzca0WZiYQbweE7S3Fkf2_bdPAM7p1niw4H3VPzurcVqUNwpUQPnErkMiy-SGbnELaKiem64-9D5zKuCrNYwJt/s200/7.jpg" width="200" /></span></a>
<li><span style="font-family: inherit; font-size: large;"><b style="text-indent: -0.25in;"> The Good News/Bad News on
Out-of-Pocket Costs </b><span style="text-indent: -0.25in;"> We’ve been highlighting the ACA’s annual cap on total
out-of-pocket caps as one of the more significant goodies for people with MS
included in the Affordable Care Act. The cap on annual out-of-</span><span style="text-indent: -0.25in;">pocket costs (deductibles
and copayments, but not premiums), set to take effect in 2014, are roughly
$6250 per year for individual coverage, and $12,500 for family coverage. But
now that the regulations addressing them have been finalized, there’s both good
news and bad news in the fine print. We’re glad to know the cap applies
to most employer-sponsored insurance plans too, but not so happy that some
health plans that now have more than one administrator for different components
of coverage, don’t have to comply with the rule until 2015. The
Society was among a number of advocacy groups that met with senior officials
from the Department of Labor about it and followed up with a </span><a href="http://www.kaiserhealthnews.org/Stories/2013/April/09/consumer-groups-protest-administration-delaying-out-of-pocket-limits-caps.aspx?utm_source=intop&utm_medium=email&utm_campaign=041113" style="text-indent: -0.25in;">sign-on
letter</a><span style="text-indent: -0.25in;"> that made headlines in health policy circles last week.</span></span></li>
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<li><span style="font-family: inherit; font-size: large;"><span style="text-indent: -0.25in;"> </span><b style="text-indent: -0.25in;">All Eyes on Arkansas:
</b><span style="text-indent: -0.25in;">Now that</span><b style="text-indent: -0.25in;">
</b><span style="text-indent: -0.25in;">Arkansas’ legislators have opted for Medicaid Expansion through </span><a href="http://www.californiahealthline.org/road-to-reform/2013/arkansas-medicaid-plan-may-not-change-game-after-all.aspx" style="text-indent: -0.25in;">the
“premium assistance” model</a><span style="text-indent: -0.25in;">, other states are wondering if relying on
private health insurance policies for Medicaid beneficiaries is the way for
them to go too. (Society staff interested in learning more about Medicaid
premium assistance programs should check out the additions to the Medicaid
Expansion Resource Guide in Sharepoint.)</span></span></li>
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<li><span style="font-family: inherit; font-size: large;"><span style="text-indent: -0.25in;"> </span><b style="text-indent: -0.25in;">Working Families to Benefit
from Insurance Subsidies:</b><span style="text-indent: -0.25in;"> In a new Congressional Budget Office </span><a href="http://www.usatoday.com/story/news/nation/2013/04/18/states-exchange-subsidies/2090503/" style="text-indent: -0.25in;">study</a><span style="text-indent: -0.25in;">
including state-by-state breakdowns, working families will benefit the most
from the Affordable Care Act’s premium subsidies. </span></span></li>
</ul>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk6jbHnzt3ZgqTFd0qWWMPTBSOLuPYiLgE8F6Ql1KR9TmH2LxFPGxQCyeY3VB0iIkfoohQ329cB30MQU-BoYgpqBPHFfwf-k_n6G79vf3-57Mdo7F64yPAZoEyXw_A9Q87ly5O4_hyphenhyphenth7g/s1600/8.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit; font-size: large;"><img border="0" height="126" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk6jbHnzt3ZgqTFd0qWWMPTBSOLuPYiLgE8F6Ql1KR9TmH2LxFPGxQCyeY3VB0iIkfoohQ329cB30MQU-BoYgpqBPHFfwf-k_n6G79vf3-57Mdo7F64yPAZoEyXw_A9Q87ly5O4_hyphenhyphenth7g/s200/8.png" width="200" /></span></a>
<li><span style="font-family: inherit; font-size: large;"><b style="text-indent: -0.25in;"> Employer-Based Coverage Trends:</b><span style="text-indent: -0.25in;"> Amid fear and
speculation about employers dropping health insurance benefits for their
workers, employers in MA and some other states buck the trend. </span><a href="http://www.boston.com/lifestyle/health/health_stew/2013/04/a_new_report_on_state-by-state.html" style="text-indent: -0.25in;">John
McDonuogh</a><span style="text-indent: -0.25in;"> tells us all about it. </span></span></li>
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<span style="font-family: inherit; font-size: large;"> Have
a great week!</span><span style="font-family: "Myriad Web","sans-serif"; font-size: 12.0pt;"><o:p></o:p></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-15970971996352569272013-04-11T10:43:00.001-04:002013-04-11T10:54:55.566-04:00CDMRP "DEAR COLLEAGUE LETTER" RECEIVES BIPARTISAN SUPPORT<br />
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<span style="font-family: inherit;"><span style="font-size: large;">Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) circulated a “Dear Colleague” letter, a common tool used to generate support for programs, through the House of Representatives requesting $10 million for <span style="color: black;"><a href="http://cdmrp.army.mil/msrp/default.shtml">MS program within Congressionally Directed Medical Research Program</a> (CDMRP). We are happy to report that the letter received bipartisan support with 52 co-signers.</span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">Please<a href="https://docs.google.com/file/d/0BwDLrxul5MwCbFVTaFhPdWNHZk0/edit?usp=sharing" target="_blank"> check</a> the list and thank your representative if they signaled their support for MS research by co-signing this letter!</span></span></div>
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<br />MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-16267502755173141262013-04-04T11:44:00.001-04:002013-04-08T09:43:31.998-04:00MS ACTIVISTS MAKING WAVES IN STATE DEBATES ON MEDICAID EXPANSION<span style="font-family: inherit;"><span style="font-size: large;"><br /></span></span><br />
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<span style="font-family: inherit;"><span style="font-size: large;">As state legislatures and governors are exploring the option of Medicaid expansion, MS activists are getting involved in the legislative process to help educate legislators about the issue and voice their opinions. Expanding Medicaid is a way to provide comprehensive, affordable health coverage to more Americans including people living with disabilities. If you would like to learn more about Medicaid, please see our post <a href="http://msactivist.blogspot.com/2013/01/to-expand-or-to-not-expand-that-is.html">here</a>.</span></span><br />
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<span style="font-size: small;">McGaughy, Lauren. “State Rep. Patricia Haynes Smith, D-Baton Rouge, on the steps of the capitol in Baton Rouge.” <i>NOLA.com|The Times-Picayune</i>. 13 Mar 2013. [http://www.nola.com/politics/index.ssf/2013/03/medicaid_expansion_obamacare_l.html]</span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">MS activists, like Crystal Smith, have been hard at work in their<span style="font-size: large;"> </span>states’ capitals. Smith testified on behalf of the Society at the joint Louisiana House and State Insurance Committees. In Louisiana, the hearing lasted for more than five hours and Medicaid advocates filled the hearing room plus an overflow room to show their support. Many advocates wore orange to show their support for the Society and people with MS. Smith’s and other activists’ hard work was mentioned in <a href="http://theadvocate.com/home/5429292-125/hearing-on-medicaid-expansion">The Advocate</a>, where the Society was recognized as an organization that supports expansion and gave testimony. Other states, such as Washington, are holding rallies with coalitions of like-minded patient advocacy groups to help increase awareness on shared priorities and our connections to public officials. </span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">State teams are sending out action alerts to gather stories to share with legislators and build the MS activist base. State teams are also inviting public officials to WALK MS events to help promote issues that are important to those living with MS, such as Medicaid expansion. As Smith remarks, “Many more conversations will take place throughout the legislative session as many organizations are making the Medicaid Expansion top priority this year.”</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">As Medicaid expansion continues to be a hot topic for state legislatures, please consider <a href="http://www.nationalmssociety.org/find-a-chapter/index.aspx">contacting</a> your local chapter to see how you can get involved! </span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">If you would like to read <i>The Advocate’s</i> article that mentions the Society, please click <a href="http://theadvocate.com/home/5429292-125/hearing-on-medicaid-expansion">here.</a></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;">If you would like to <span style="font-size: large;">read </span></span></span><span style="font-family: inherit;"><span style="font-size: large;"><span style="font-size: large;"><i><span class="author vcard">The Times Picayune<span style="font-size: large;">'</span></span>s</i> article <span style="font-size: large;">that <span style="font-size: large;">includes</span> the picture a<span style="font-size: large;"><span style="font-size: large;">bo<span style="font-size: large;">v</span>e</span>, please click</span></span></span></span></span><span style="font-size: large;"> </span><a href="http://www.nola.com/politics/index.ssf/2013/03/medicaid_expansion_obamacare_l.html"><span style="font-size: large;">here.</span></a><span style="font-size: large;"> </span></div>
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MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com1tag:blogger.com,1999:blog-2810036471450306171.post-6306393226946394132013-04-02T09:44:00.000-04:002013-04-02T09:57:09.507-04:00FEDERAL FRIDAYS<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: inherit;"><span style="font-family: Jigsaw-Regular;"><span style="font-size: large;">The end of March is here, Congress finalized FY 2013 spending plans, and Members of Congress are back in their states/districts for Easter break. We are now focused on funding for core issues including NIH & CDMRP, FDA, and Lifespan Respite. In this issue there is news around biosimilar development, the charitable deduction, Bob Dole’s take on the disability treaty fight, a bill introduced to deal with the doctor shortage and other issues. At the end we have another <b><span style="color: #f79646;">Health Reform Implementation</span></b><span style="color: #f79646;"> </span>section. <o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">BG-12 Approved</span></u></b><b><span style="font-family: Jigsaw-Regular;">! </span></b><span style="font-family: Jigsaw-Regular;">The U.S. Food and Drug Administration has <a href="http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7539&utm_source=twitterfeed&utm_medium=twitter&utm_term=%23MSresearch"><span style="color: blue;">approved</span></a><b> Tecfidera™ </b>capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with <a href="http://www.nationalmssociety.org/about-multiple-sclerosis/relapsing-ms/index.aspx" target="_self"><span style="text-decoration: none; text-underline: none;"><span style="color: blue;">relapsing forms</span></span></a> of MS. This makes the third oral therapy approved for relapsing MS, and the <b>tenth</b> disease-modifying treatment available in the U.S. Tecfidera is expected to be available by prescription within a few days.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Are you on Twitter?</span></u></b><span style="font-family: Jigsaw-Regular;"> If you are, be sure to follow us at <a href="http://www.twitter.com/msactivist"><span style="color: blue;">@MSActivist</span></a>!<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">FY 2013 is <i>finally</i> done</span></u></b><span style="font-family: Jigsaw-Regular;">. The House and Senate passed another 6 month temporary spending bill, known as a CR (continuing resolution) that extends federal government funding through the end of the fiscal year. It was signed by the president so FY 2013 battles are done. Sequestration is still in effect however some agencies will see very modest increases in spending. Outlined below are 4 programs of great interest to the Society: </span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><span style="font-family: Jigsaw-Regular;">National Institutes of Health: A $71 million increase over FY2012 funding level</span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><span style="font-family: Jigsaw-Regular;">Food and Drug Administration: A $9 million dollar increase over FY2012</span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><span style="font-family: Jigsaw-Regular;">Congressionally Directed Medical Research Programs (CDMRP): The exact funding for the MS CDMRP is still unknown but is expected to be similar to FY2012 ($3.8 million)</span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><span style="font-family: Jigsaw-Regular;">Lifespan Respite: We are awaiting final confirmation<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Federal Budget Passed</span></u></b><span style="font-family: Jigsaw-Regular;">. For the first time in four years the U.S. Senate passed a budget. The House passed one too. They did so in part to meet an April 15 deadline created by another bill that became law that said that whatever chamber fails to pass a budget will go without a paycheck until the end of the Congress (January 2015). So the good news is that a budget passed. The real news is that it doesn’t matter – the two Houses are <a href="http://www.forbes.com/sites/beltway/2013/03/25/dont-hold-your-breath-for-a-budget-house-senate-arent-even-trying-to-reconcile-bills/"><span style="color: blue;">unlikely to reconcile the bills</span></a> and re-pass the budget since they are pretty irreconcilable, and it doesn’t matter because these are non-binding resolutions. The effect of a budget that is passed and sent to the President is primarily to provide a framework or blueprint from which to work. Meanwhile, the White House announced yesterday that it will release its budget on April 10.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Charitable Deduction Update.</span></u></b><span style="font-family: Jigsaw-Regular;"> There was some gamesmanship in the Senate last week with an amendment that would direct Congress to NOT alter the charitable deduction but it was incorporated into an amendment that would reduce the revenue raising provision of the resolution from $975 billion down to $483 billion, putting those Senators who support the charitable deduction in a bit of a bind. It didn’t pass, and even if it did, budget resolutions are non-binding so the Senate could ignore the provision in a tax reform or appropriations cycle. So for the time being, the charitable deduction remains.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="color: #f79646; font-family: Jigsaw-Regular;">Up Next: FY 2014!</span></u></b><b><span style="color: #f79646; font-family: Jigsaw-Regular;"> </span></b><span style="font-family: Jigsaw-Regular;">Dear Colleagues are circulating in Congress to support $10 million in funding for the <b>MS Congressionally Directed Medical Research Program</b> (CDMRP), $32 billion for the <b>National Institutes of Health (NIH)</b>, and $2.5 million for <b>Lifespan Respite</b>. The Society has notified members of the Congressional MS Caucus in the House and Senate and are working in coalition with other groups to advocate for these funding levels for FY 2014, and further communications have been sent to Society advocacy staff and activists asking them to contact their elected officials urging them to sign onto these letters and support the funding requests. If you’ve received the alert, please take action<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Doctor Shortage</span></u></b><span style="font-family: Jigsaw-Regular;">. New York Representatives Michael Grimm and Joe Crowley along with NY Senator Chuck Schumer, Senate Majority Leader Harry Reid and Senator Bill Nelson of Florida <a href="http://www.washingtontimes.com/news/2013/mar/18/lawmakers-push-bill-primary-care-doctor-shortage/"><span style="color: blue;">introduced companion legislation</span></a> to try and partially address the physician shortage problem in the U.S. Their legislation, the <a href="http://thomas.loc.gov/cgi-bin/bdquery/D?d113:2:./temp/~bdfj2M::|/bss/|"><span style="color: blue;">Resident Physician Shortage Reduction Act of 2013</span></a>, would increase the number of Medicare-supported hospital residency positions by 15,000, or 3,000 per year over five years. In touting the companion bills, lawmakers said current Medicare rules keep an outdated cap from 1997 on the number of resident doctors a hospital may train through government-backed graduate medical education (GME) funding. The Society is seeking clarification as to whether this bill applies to specialties like neurology.<o:p></o:p></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhppBLxVHy-9yy_x8A7oGvie6jsFT4o_t2jt_1QA0tSRMG7dToAhXr3lj8om31fhGrIPoCAamdFogNRhpLNovLmScGVrkT8FiuRTJz0z5Kn3hntp28N2blOFPqBMc1lSOeVz6fvDHzX6NCP/s1600/2.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" mta="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhppBLxVHy-9yy_x8A7oGvie6jsFT4o_t2jt_1QA0tSRMG7dToAhXr3lj8om31fhGrIPoCAamdFogNRhpLNovLmScGVrkT8FiuRTJz0z5Kn3hntp28N2blOFPqBMc1lSOeVz6fvDHzX6NCP/s1600/2.jpg" /></a><span style="font-family: inherit;"><v:shape alt="Description: http://www.lifesitenews.com/images/sized/images/news/UN-CRPD-DolesOnSenateFloor--171x188.jpg" id="Picture_x0020_5" o:spid="_x0000_s1029" style="height: 141pt; margin-left: 0px; margin-top: 0.05pt; mso-height-percent: 0; mso-height-relative: page; mso-position-horizontal-relative: text; mso-position-horizontal: absolute; mso-position-vertical-relative: text; mso-position-vertical: absolute; mso-width-percent: 0; mso-width-relative: page; mso-wrap-distance-bottom: 0; mso-wrap-distance-left: 9pt; mso-wrap-distance-right: 9pt; mso-wrap-distance-top: 0; mso-wrap-style: square; position: absolute; visibility: visible; width: 128.5pt; z-index: 251661312;" type="#_x0000_t75"><v:imagedata o:title="UN-CRPD-DolesOnSenateFloor--171x188" src="file:///C:\Users\KATHER~1.FRI\AppData\Local\Temp\msohtmlclip1\01\clip_image003.jpg"></v:imagedata><w:wrap type="square"></w:wrap></v:shape><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Disability Treaty – Bob Dole’s view.</span></u></b><span style="font-family: Jigsaw-Regular;"> Former GOP presidential nominee and Senate Majority Leader Bob Dole gave an in depth interview to the <a href="http://www.bostonglobe.com/news/nation/2013/03/23/the-story-washington-gridlock-seen-through-eyes-bob-dole/bicDzPfwy1ta6SgirmDRQP/story.html">Boston Globe</a> discussing his take on what has happened within the Republican Party culminating in the vote to not ratify the Convention on the Rights of Persons with Disabilities. He highlighted that in his day, there was ‘The Pact’, that on disability issues, there wouldn’t be partisanship and political gamesmanship. Clearly that is no longer the case.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">America spends big bucks on Health Care</span></u></b><span style="font-family: Jigsaw-Regular;">. In a new <a href="http://click.email-commonwealthfund.org/?qs=ca3b73b72573c4db72804de49349b078b5a04ce7bdb3668cb86f4db636d844bd"><span style="color: blue;">blog post and infographic, </span></a>Commonwealth Fund senior research associate David Squires, M.A., estimates how much money the U.S. would have saved if we had spent only as much per person on health as Switzerland, the country with the second-most-expensive health system. He also considers what that money could buy if we had it today.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Savings with Biosimilars?</span></u></b><span style="font-family: Jigsaw-Regular;"> Biosimilars are not generics, and won’t see the level of savings seen with the introduction of generic pharmaceuticals. Some people question whether there will be <a href="http://www.forbes.com/sites/henrymiller/2013/03/27/do-you-think-biosimilars-will-reduce-healthcare-expenditures-think-again/"><span style="color: blue;">significant savings</span></a> at all.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">State Regulation of Biosimilars.</span></u></b><span style="font-family: Jigsaw-Regular;"> The <a href="http://www.latimes.com/news/opinion/editorials/la-ed-biosimilars-20130317,0,5268321.story"><span style="color: blue;">Los Angeles Times</span></a> had a recent editorial saying that states should keep hands-off biosimilars.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u><span style="font-family: Jigsaw-Regular;">Drug/Device Approvals to Slow</span></u></b><span style="font-family: Jigsaw-Regular;">. According to the FDA commissioner, the across the board spending cuts will have an impact on the speed with which the agency is able to <a href="http://bostonherald.com/business/healthcare/2013/03/fda_chief_warns_budget_cuts_could_slow_drug_approvals"><span style="color: blue;">provide approvals</span></a>.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">Do Americans Understand the ACA?</span></b><span style="font-family: Jigsaw-Regular;"> According to a <a href="http://thehill.com/blogs/healthwatch/politics-elections/289279-poll-voters-still-dont-know-whats-in-obama-health-law"><span style="color: blue;">recent poll</span></a>, there is still a lot of confusion over the health reform law.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">What’s a Reg-u-la-palooza?</span></b><span style="font-family: Jigsaw-Regular;"> It’s a made-up word for the frenzy of activity going on at the federal agencies as they issue final regulations, official guidance documents and other really important stuff to implement the Affordable Care Act. In the last few weeks, five major regulations have been finalized, including one on the Essential Health Benefits and Cost-sharing Requirements. Read through this <a href="http://chirblog.org/exchange-roundup-reg-a-palooza/"><span style="color: blue;">summary</span></a> from our friends at the Georgetown Center for Health Insurance Reform. If you really want to get wonky, sign up for their Blog Posts through the link toward the bottom of <a href="http://chirblog.org/about-this-blog/"><span style="color: blue;">this page</span></a>.<o:p></o:p></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjwR3hwe6BO5EUiTiFj4gYGCgwH8FQf-CaoI_8uNtMtcndyjBgPmjsC5nfncS217Pys_huRXgEiuYMhxOXkZnW9FZt6_4L3So-xAxaY7dGSCInFeS2lZZLy36n4S30H3nnxaBkzgTT6FOm/s1600/4.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" mta="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjwR3hwe6BO5EUiTiFj4gYGCgwH8FQf-CaoI_8uNtMtcndyjBgPmjsC5nfncS217Pys_huRXgEiuYMhxOXkZnW9FZt6_4L3So-xAxaY7dGSCInFeS2lZZLy36n4S30H3nnxaBkzgTT6FOm/s1600/4.jpg" /></a><span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">Could limits on the Essential Health Benefits discriminate?</span></b><span style="font-family: Jigsaw-Regular;"> Some disability rights advocates think federal regulations regarding the Essential Health Benefits that new health plans must cover in 2014 and beyond will allow insurers to limit and exclude benefits important to people with chronic illness and disability so much that they could be discriminatory. In this <a href="http://healthaffairs.org/blog/author/rosenbaum/"><span style="color: blue;">Health Affairs blog post</span></a>, Sara Rosenbaum and Joel Teitelbaum look for reasons why people with MS and others should feel well protected by the new regulatory standards, and find little to be happy about. <o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">Life after 2014? </span></b><span style="font-family: Jigsaw-Regular;">Kaiser Family Foundation President and CEO Drew Altman responds to reporters’ questions, and even manages to take the longer view, in his latest <a href="http://www.kff.org/pullingittogether/altman_aca_2014.cfm"><span style="color: blue;">‘Pulling It Together’</span></a>.<o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="font-family: Jigsaw-Regular;">S<b>peculation on Premiums: Up, Down, Somewhere in Between? </b></span><span style="font-family: Jigsaw-Regular;">There’s plenty of uncertainty about what impact the Affordable Care Act’s insurance reforms will have on health insurance premiums. A new analysis by the Society of Actuaries suggests some will see big increases, but others don’t agree. <a href="http://www.reuters.com/article/2013/03/26/us-usa-healthcare-sebelius-idUSBRE92P1AV20130326"><span style="color: blue;">Secretary Sebelius concedes </span></a> that some individual policy holders are more likely to experience an increase in their premium, but others will pay less. A recent <a href="http://www.urban.org/publications/412757.html"><span style="color: blue;">report</span></a> by The Urban Institute claims that fears of “rate shock” that some claim young adults will experience are exaggerated. This <a href="http://policyinsights.kff.org/en/2013/february/why-premiums-will-change-for-people-who-now-have-nongroup-insurance.aspx"><span style="color: blue;">Fact Sheet</span></a> from Kaiser Family Foundation </span><v:shape alt="Description: Description: http://www.vectorstock.com/i/composite/18,78/stethoscope-icon-vector-741878.jpg" id="Picture_x0020_1" o:spid="_x0000_s1026" style="height: 59.5pt; left: 0px; margin-left: 34.6pt; margin-top: 0.05pt; mso-height-percent: 0; mso-height-relative: page; mso-position-horizontal-relative: text; mso-position-horizontal: right; mso-position-vertical-relative: text; mso-position-vertical: absolute; mso-width-percent: 0; mso-width-relative: page; mso-wrap-distance-bottom: 0; mso-wrap-distance-left: 9pt; mso-wrap-distance-right: 9pt; mso-wrap-distance-top: 0; mso-wrap-style: square; position: absolute; text-align: left; visibility: visible; width: 68.5pt; z-index: 251658240;" type="#_x0000_t75"><v:imagedata o:title="stethoscope-icon-vector-741878" src="file:///C:\Users\KATHER~1.FRI\AppData\Local\Temp\msohtmlclip1\01\clip_image008.jpg"></v:imagedata><w:wrap type="square"></w:wrap></v:shape><span style="font-family: Jigsaw-Regular;">explains how and why premiums will change for individual (“non-group”) insurance policies. <o:p></o:p></span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK9pauXAOUEM7Rn5ovMQulReA7i2NK20_acgxKt1Yj12ZW1-MLMA-BKyJJFtPHa4IRvJjiJ8hIz8leH4IuO91uo-nor8XTM9DW4CFc40c5Dq6e90HupjGZtFIPgL_YNZrIZZ-kF1oToUqk/s1600/5.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" mta="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK9pauXAOUEM7Rn5ovMQulReA7i2NK20_acgxKt1Yj12ZW1-MLMA-BKyJJFtPHa4IRvJjiJ8hIz8leH4IuO91uo-nor8XTM9DW4CFc40c5Dq6e90HupjGZtFIPgL_YNZrIZZ-kF1oToUqk/s1600/5.jpg" /></a><span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">Physicians’ Survey on the Affordable Care Act and the Future of Medical Care.</span></b><span style="font-family: Jigsaw-Regular;"> Consulting firm Deloitte periodically surveys US physicians for their take on changes in, and challenges to the health care system. Check out the highlight of their <a href="http://www.deloitte.com/view/en_US/us/Insights/centers/center-for-health-solutions/a5ee019120e6d310VgnVCM1000003256f70aRCRD.htm?id=email_dchs_2013physciansurvey_03192013"><span style="color: blue;">2013 survey</span></a>, or download the whole (15 p) report. <o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">Making It Look Easy</span></b><span style="font-family: Jigsaw-Regular;"> Ever wonder how busy activists keep up with all the new ACA rules? We have a few tricks, like reading every word written by certain gurus. Here’s a string of blog posts (newest to oldest) by Washington & Lee Law Professor <a href="http://healthaffairs.org/blog/2013/03/19/implementing-health-reform-waiting-periods-and-enforcement-of-market-reforms/"><span style="color: blue;">Tim Jost</span></a> on ACA rules and policy decisions. <o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-family: Jigsaw-Regular;">Keeping Track of Medicaid Expansion Decisions</span></b><span style="font-family: Jigsaw-Regular;"> – We’ve included it before, and we’ll include it again. National Academy for State Health Policy’s <a href="http://www.statereforum.org/medicaid-expansion-decisions"><span style="color: blue;">tracking chart</span></a> on states’ decisions and progress on Medicaid expansion is the tool to use. It’s got data galore, history, Governor and Legislative branch activity, and links to key documents. Knock yourselves out! <o:p></o:p></span></span></span></div>
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<span style="font-family: inherit;"><span style="font-family: Jigsaw-Regular; mso-ansi-language: EN-US; mso-bidi-font-family: Calibri; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><span style="font-size: large;">That’s it for now – as always, feedback is appreciated, including suggestions of other issues/subjects you would like to hear more about. Have a good week!</span></span></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-37509181441921398462013-03-28T23:32:00.001-04:002013-03-28T23:32:29.604-04:00FDA APPROVES NEW ORAL THERAPY FOR RELAPSING MS<span class="Apple-style-span" style="font-family: inherit; font-size: large;"><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">The U.S. Food and Drug Administration (FDA) has approved Tecfidera ™. This makes the third oral therapy approved for relapsing MS and tenth disease modifying treatment available in the U.S.</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">In less than two decades, MS has moved from an untreatable disease to one where there are now 10 FDA approved disease modifying therapies for relapsing MS, the most common form of the disease, and a significant number of other exciting therapies in late stage development or already before the FDA for review.</span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><br /></span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;">This approval is a great step forward for the MS community! It is also a major advancement to share with your public officials about why continuing to fund MS research and the FDA is so important. To read more, please visit </span><span class="Apple-style-span" style="border-collapse: collapse; color: #222222;"><a href="http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7539" style="color: #1155cc;" target="_blank">http://www.nationalmssociety.<wbr></wbr>org/news/news-detail/index.<wbr></wbr>aspx?nid=7539</a></span></span>MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-39667903674225499562013-03-18T14:58:00.001-04:002013-03-18T14:58:22.025-04:00MS ACTIVISTS MAKE CONNECTIONS DESPITE SNOW STORM<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;"><span style="font-family: inherit;">Stewart Ferry, Rep. Gloria Negrete McLeod (CA-35), Mary Ann Braubach</span></span> </td></tr>
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<span style="font-family: inherit; font-size: large;">March 4-6, the 22<sup>nd</sup> annual National MS Society Public Policy Conference was held in Arlington, VA. Over 300 MS Activists came together to learn about our 2013 priorities: maintaining adequate funding for the Food and Drug Administration (FDA) and for MS-related research at the National Institutes of Health and the Department of Defense. Guest speakers included Fmr. Senator </span><br />
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<span style="font-family: inherit; font-size: large;">Byron Dorgan (ND), JP Paluskiewicz, deputy chief of staff to MS Caucus Co-Chair Rep. Michael Burgess, MD (TX-26) and veteran pollster Celinda Lake. MS activists talked about how they are involved at the FDA and the impact that medical research has had on the development of MS therapies and other speakers educated the crowd about using social media to promote advocacy.</span></div>
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<span style="font-family: inherit;"><span style="font-size: small;">Jimmy Fahrenholtz, Roi-Lynne
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<br /><br /><span style="font-family: inherit;"><span style="font-size: large;">A snow storm, which earned the formidable nickname<span style="font-size: large;"> </span>“Snowquester” hit the D.C. region towards the end of the conference and unfortunately, significantly impacted the visits MS </span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">activists were planning to make on Capitol Hill<span style="line-height: 115%;">. Despite this, MS<span style="font-size: large;"> </span>activists persevered and some were able to visit their lawmakers before they headed home! Dozens of Hill visits occurred the day before and after the scheduled Hill Day and one meeting even occurred in the airport! </span></span></span></div>
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<span style="font-size: small;"><span style="font-family: inherit;">Rep. John Shimkus (IL-15), Amy Thomas, Steve Izard, Rep. Rodney Davis (IL-13)</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">Even though the storm dampened our Hill Day, true to form, our MS activists remained strong and were able to educate our public officials about MS and encourage them to support funding for the FDA and MS research. The budget climate in Washington remains tough, so this advocacy is critical to preserving funding for our community and kick starts our year.</span><span style="line-height: 115%;"> </span><span style="line-height: 115%;">Thanks to all those who traveled to Washington and persevered in the eye of the storm!</span></span></span>MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-37294822570087629492013-03-13T10:31:00.000-04:002013-03-13T10:31:13.203-04:00MS AWARENESS WEEK IS MARCH 11-17th!!<!--[if gte mso 9]><xml>
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</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">MS Activists at the 2013 Public Policy
Conference started an early kick off for MS Awareness week. Although the impending
snow storm dampened our visits to Capitol Hill, it did not dampen our
Activists’ enthusiasm. MS activists who were able to visit congressional
offices raised awareness about MS and urged their members to post on social
media during MS Awareness Week and cosponsor the congressional resolution. </span></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">Representatives
<span>Barbara Lee</span> (CA-13), <span>Michael Burgess, M.D.</span> (TX-26) and <span>Chris Van Hollen</span> (MD-8) introduced the
Multiple Sclerosis Awareness Week Resolution (<span style="color: #1f497d;"><a href="http://thomas.loc.gov/cgi-bin/query/z?c113:H.RES.95:">H.Res. 95</a></span></span><span style="color: windowtext; line-height: 115%; text-decoration: none;">) and Senators <span>Bob
Casey</span> (PA), <span>Susan Collins</span>
(ME), <span>Mary Landrieu</span> (LA) and <span>Sherrod Brown</span> (OH) will introduce a
companion in the Senate (bill number not available yet). Use the link above to
follow the Resolution’s progress and see if your Representative has cosponsored
it. Please consider thanking</span><span style="line-height: 115%;">
these legislators for their continued support! </span></span></span></div>
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<br /></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">Here are some easy ways to boost your
involvement with MS Awareness Week:</span></span></span></div>
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<br /></div>
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</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">-Connect with your </span><a href="http://www.nationalmssociety.org/find-a-chapter/index.aspx"><span style="line-height: 115%;">chapter</span></a><span style="line-height: 115%;">
to find out about local happenings recognizing MS Awareness Week</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">-</span><a href="http://www.nationalmssociety.org/online-community/social-networking/index.aspx"><span style="line-height: 115%;">Connect</span></a><span style="line-height: 115%;">
with the Society on social media and ask your friends to connect with us too!
Every connection counts so share <a href="http://www.msconnection.org/">why you connect</a>.</span></span></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">-Use
the </span><a href="http://www.nationalmssociety.org/get-involved/activist-toolkit/index.aspx"><span style="line-height: 115%;">MS Activist Toolkit</span></a><span style="line-height: 115%;"> to spread the word and educate public
officials about MS</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">-Stay </span><a href="http://www.nationalmssociety.org/MyProfile.aspx"><span style="line-height: 115%;">informed</span></a><span style="line-height: 115%;"> by signing up to receive the Society’s email
communications</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">-</span><a href="http://www.nationalmssociety.org/get-involved/events/ms-awareness-week-2013/downloads/index.aspx"><span style="line-height: 115%;">Download</span></a><span style="line-height: 115%;">
badges, email signature images, wallpapers and more to increase MS awareness</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="line-height: 115%;">-</span><a href="http://main.nationalmssociety.org/site/Donation2?df_id=44249&44249.donation=form1"><span style="line-height: 115%;">Donate</span></a><span style="line-height: 115%;">
to help us move closer toward a world free of MS</span></span></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-50372357524815716662013-03-11T10:19:00.001-04:002013-03-11T10:19:17.382-04:00FEDERAL FRIDAYS<div class="MsoNormal" style="margin: 0in 0in 0pt;">
<span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">Happy meteorological spring! It arrived in the Washington area with a refresher course on what winter looks like with a snowstorm hitting early this week, dumping over 18 inches on some parts of the Greater DC metro area. This edition has a summary of our Public Policy Conference plus a lot of information on the sequester and the budget, an upcoming medical research rally the Society is co-sponsoring, a link to a new MS fact sheet by Research!America, and of course information on how (not) devastating the budget situation is on Members of Congress. Be sure to get to the end though – interesting statistic about St. Patrick’s Day.<o:p></o:p></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">2013 Public Policy Conference</span></u></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">. Earlier this week the 22<sup>nd</sup> Annual National MS Society Public Policy Conference was held in Arlington, VA with over 300 MS Activists coming together for a ‘deeper dive’ into our 2013 priorities: maintaining adequate funding for the FDA and for medical research at the National Institutes of Health and the Department of Defense. Senator <b>Byron Dorgan</b> kicked off the conference talking about what needs to be done to get our fiscal house in order, and relaying stories about his time in office. <b>JP Paluskiewicz</b>, deputy chief of staff to MS Caucus Co-Chair Rep. Michael Burgess, MD detailed the current status of the federal budget, sequestration, and what the climate in Congress is right now. Veteran pollster <b>Celinda Lake</b> was our lunch speaker, highlighting trends including the popularity (or rather, un-popularity) of Congress and the ongoing partisan fights. Numerous other speakers, including MS Activists, presented information on medical research, the role of the FDA, engagement on-line and on-the-ground, and various other subjects.<o:p></o:p></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">PPC Hill Day</span></u></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">. For what we believe was the first time in its history, PPC Hill Day had to be cancelled due to a late winter storm that hit the area that the Weather Channel named ‘Saturn’ and politicos and local weather people affectionately named ‘Snowquestration.’ An improvised day took shape with a second medical research Q & A with Chief Research Officer <b>Tim Coetzee</b>, Reingold Inc. social media/communications/research expert <b>Joe LaMountain</b>, and additional networking roundtables. Even though the official Hill Day needed to be cancelled due to safety concerns, dozens of Hill visits occurred the day before and the day after (and of course, many braved the weather and kept their scheduled visits.<o:p></o:p></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">MS Awareness Week Resolution introduced</span></u></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">. Representatives <b>Barbara Lee</b> (D-CA), <b>Michael Burgess</b> (R-TX) and <b>Chris Van Hollen</b> (D-MD) introduced the Multiple Sclerosis Awareness Week Resolution (<span style="color: #1f497d;"><a href="http://thomas.loc.gov/cgi-bin/query/z?c113:H.RES.95:"><span style="color: blue;">H.Res. 95</span></a></span><a href="http://thomas.loc.gov/cgi-bin/query/z?c113:H.RES.95:"><span style="color: windowtext; text-decoration: none; text-underline: none;">) and Senators <b>Bob Casey</b> (D-PA), <b>Susan Collins</b> (R-ME), <b>Mary Landrieu</b> (D-LA) and <b>Sherrod Brown</b> (D-OH) have introduced a companion in the Senate (bill number not available yet). Please contact your Senators and Representative and encourage them to co-sponsor these resolutions!</span></a><o:p></o:p></span></div>
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<v:shapetype coordsize="21600,21600" filled="f" id="_x0000_t75" o:preferrelative="t" o:spt="75" path="m@4@5l@4@11@9@11@9@5xe" stroked="f"><v:stroke joinstyle="miter"></v:stroke><v:formulas><v:f eqn="if lineDrawn pixelLineWidth 0"></v:f><v:f eqn="sum @0 1 0"></v:f><v:f eqn="sum 0 0 @1"></v:f><v:f eqn="prod @2 1 2"></v:f><v:f eqn="prod @3 21600 pixelWidth"></v:f><v:f eqn="prod @3 21600 pixelHeight"></v:f><v:f eqn="sum @0 0 1"></v:f><v:f eqn="prod @6 1 2"></v:f><v:f eqn="prod @7 21600 pixelWidth"></v:f><v:f eqn="sum @8 21600 0"></v:f><v:f eqn="prod @7 21600 pixelHeight"></v:f><v:f eqn="sum @10 21600 0"></v:f></v:formulas><v:path gradientshapeok="t" o:connecttype="rect" o:extrusionok="f"></v:path><o:lock aspectratio="t" v:ext="edit"></o:lock></v:shapetype><v:shape id="Picture_x0020_2" o:spid="_x0000_s1026" style="height: 134.25pt; margin-left: 320.95pt; margin-top: 435.65pt; mso-height-percent: 0; mso-height-relative: page; mso-position-horizontal-relative: text; mso-position-horizontal: right; mso-position-vertical-relative: text; mso-position-vertical: absolute; mso-width-percent: 0; mso-width-relative: page; mso-wrap-distance-bottom: 51.15pt; mso-wrap-distance-left: 53.64pt; mso-wrap-distance-right: 55.83pt; mso-wrap-distance-top: 40.32pt; position: absolute; visibility: visible; width: 133.5pt; z-index: 251659264;" type="#_x0000_t75"><v:imagedata o:title="" src="file:///C:\Users\KATHER~1.FRI\AppData\Local\Temp\msohtmlclip1\01\clip_image001.jpg"></v:imagedata><w:wrap type="square"></w:wrap></v:shape><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><o:p></o:p></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoL-uZPnrOegFaL3PCQdVrDaQYpNRk-SC0arHbUsK6KDVVMTeNmi0mJ-tFg1jALv0FXgKI57hVzv6YmwCCgus5leFVoyABOtGuVsoYpJgkjoMddqsctPQAiqHdudJod_pQvv-6kBRGa58P/s1600/1.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" psa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoL-uZPnrOegFaL3PCQdVrDaQYpNRk-SC0arHbUsK6KDVVMTeNmi0mJ-tFg1jALv0FXgKI57hVzv6YmwCCgus5leFVoyABOtGuVsoYpJgkjoMddqsctPQAiqHdudJod_pQvv-6kBRGa58P/s1600/1.jpg" /></a><b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://thomas.loc.gov/cgi-bin/query/z?c113:H.RES.95:"><span style="color: windowtext;">Catch ‘em where you can!</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> Illinois Activists saw an opportunity and took it! While en route back home they saw that Representatives John Shimkus and Rodney Davis were on the same flight so they took the opportunity to lobby them on our issues and snapped a photo to boot! Way to go!</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://thomas.loc.gov/cgi-bin/query/z?c113:H.RES.95:"><span style="color: windowtext;">Elected Official Honorees</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. Honorees presented with their awards at PPC included </span><span style="color: windowtext; text-decoration: none; text-underline: none;">Governor Chris Christie</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> of New Jersey as Governor of the Year, </span><span style="color: windowtext; text-decoration: none; text-underline: none;">Senator Tom Harkin</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> of Iowa as Senator of the Year (he is our only two time recipient), </span><span style="color: windowtext; text-decoration: none; text-underline: none;">Representative Cathy McMorris Rodgers</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> as Representative of the Year, and a new award for former </span><span style="color: windowtext; text-decoration: none; text-underline: none;">Senator Olympia Snowe</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">, recipient of a Congressional Lifetime achievement award. Her former state director, </span><span style="color: windowtext; text-decoration: none; text-underline: none;">Gail Kelly Sheehan</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> was named Congressional Staff Person of the year. In her other life, Gail is also an MS Activist, helping secure support for MS issues legislatively, raising over $150,000 for MS research with her ‘Kelly’s Kruisers’ team, and her service on the Greater New England board.</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://www.nationalmssociety.org/get-involved/activist-toolkit/digital-activist/index.aspx"><span style="color: windowtext;">Become a Digital MS Activist.</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> Learn how to engage in advocacy and activism the digital way! Check out the ‘how to’ on the Society’s </span><span style="font-weight: normal;"><span style="color: blue;">digital activism page</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">.</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://rallyformedicalresearch.org/Pages/default.aspx"><span style="color: windowtext;">Rally for Medical Research in DC</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. The National MS Society is joining with dozens of other groups on April 8 in a </span><span style="font-weight: normal;"><span style="color: blue;">rally for medical research funding</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. </span><span style="color: #1f497d; font-weight: normal; text-decoration: none; text-underline: none;">S</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">ign up for email alerts about the rally</span><span style="color: #1f497d; font-weight: normal; text-decoration: none; text-underline: none;"> under ‘get involved</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">.</span></a></span></u></b><b><span style="color: #1f497d; font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">’</span></b><b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://www.researchamerica.org/uploads/MultipleSclerosisFinal.pdf"><span style="color: windowtext;">Research!America MS Fact Sheet available</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. The National MS Society partnered with Research!America to create a </span><span style="font-weight: normal;"><span style="color: blue;">fact sheet</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> which is now available on their website. Highlights why we need to continue the push for MS research!</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="https://petitions.whitehouse.gov/response/increasing-public-access-results-scientific-research"><span style="color: windowtext;">Federally Funded Research to be made public.</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> The </span><span style="font-weight: normal;"><span style="color: blue;">White House announced</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> that research funded with federal dollars will now be made </span></a></span></u></b><a href="http://www.researchamerica.org/uploads/MultipleSclerosisFinal.pdf"><span style="color: windowtext; font-family: 'Myriad Web','sans-serif'; font-size: 12pt; text-decoration: none; text-underline: none;">available to the public.</span></a><o:p></o:p></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://healthland.time.com/2013/02/20/bitter-pill-why-medical-bills-are-killing-us/"><span style="color: windowtext;">Bitter Pill.</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> TIME magazine has a very good, </span><span style="font-weight: normal;"><span style="color: blue;">extensive article</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> complete with real examples of cost drivers in the American health care system that keep our costs, arguably, artificially high.</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">Sequestration in effect</span></u></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">. The across the board spending cuts have begun, with President Obama signing necessary papers last Friday to make it real. Leading up to the deadline, the president and his team rolled out numerous examples of the impact of sequestration. Some Democrats are concerned that <span style="color: #1f497d;"><a href="http://www.politico.com/story/2013/03/white-house-recalibrates-sequester-messaging-88484.html"><span style="color: blue;">he may have overplayed it</span></a></span> a bit (or a lot). Others are highlighting how sequestration could set America back as a leader in areas like medical research and innovation, and how it could impact patients and communities. Meanwhile the credit agencies have simply yawned, saying more cuts are needed.<b><o:p></o:p></b></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://www.politico.com/story/2013/02/sequestration-bring-it-on-88052.html"><span style="color: windowtext;">Sequestration Humor</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. Columnist Roger Simon takes a </span><span style="font-weight: normal;">whack at sequestration</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> with a little humor!</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://thehill.com/blogs/on-the-money/budget/286057-credit-rating-agencies-shrug-off-sequester-say-more-cuts-needed"><span style="color: windowtext;">Sequestration defined</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. </span><span lang="EN" style="color: windowtext; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">/</span><span lang="EN" style="color: windowtext; font-family: 'Arial','sans-serif'; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">ˌ</span><span lang="EN" style="color: windowtext; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">sēkwi</span><span lang="EN" style="color: windowtext; font-family: 'Arial','sans-serif'; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">ˈ</span><span lang="EN" style="color: windowtext; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">strāSH</span><span lang="EN" style="color: windowtext; font-family: 'Arial','sans-serif'; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">ə</span><span lang="EN" style="color: windowtext; font-weight: normal; mso-ansi-language: EN; text-decoration: none; text-underline: none;">n/ Noun: <i>‘The action of taking legal possession of assets until a debt has been paid or other claims have been met. The action of taking forcible possession of something; confiscation.’</i></span></a></span></u></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><o:p></o:p></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">How are Lawmakers affected by Sequestration</span></u></b><b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">?</span></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"> Their salaries aren’t touched, but their budget to run their offices are. In legislation to suspend the debt ceiling temporarily, a ‘No Budget, No Pay’ provision was enacted so that whichever chamber doesn’t pass a budget by April 15, its <span style="color: #1f497d;"><a href="http://www.lasvegassun.com/news/2013/feb/10/no-teeth-no-budget-no-pay-law-means-budget-busines/"><span style="color: blue;">members’ pay will be escrowed</span></a></span> until the end of the current Congress (January 2015). Before cheering about this provision, the fine print apparently says nothing about the two chambers agreeing to a budget, just that they have to approve one . . . clever eh?<b><u><o:p></o:p></u></b></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://www.politico.com/gallery/2013/02/a-look-inside-the-white-house/000836-011899.html"><span style="color: windowtext;">White House tours nixed.</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> Sequestration has caused the White House to cancel its tours. You can take a virtual tour </span><span style="font-weight: normal;"><span style="color: blue;">here</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> though!</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><a href="http://abcnews.go.com/blogs/politics/2013/03/house-passes-six-month-stopgap-bill-to-fund-government/"><span style="color: windowtext;">Government Shutdown on March 27 (likely) averted</span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;">. Before leaving town on Wednesday, the House of Representatives </span><span style="font-weight: normal;"><span style="color: blue;">passed a bill</span></span><span style="color: windowtext; font-weight: normal; text-decoration: none; text-underline: none;"> to extend the temporary spending bill, or continuing resolution (CR) for another 6 months to prevent a government shutdown. The House bill blunts the impact of sequestration on defense spending, and the Senate bill is likely to do the same for non-defense spending, so the extension effort is not a ‘clean’ effort so negotiations will determine whether a shutdown will be averted.</span></a><o:p></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">Federal Budget & Deficit Deal maneuverings</span></u></b><b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">.</span></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"> President Obama has begun an outreach effort to rank and file members of the House and Senate, going around each chambers leaders to try and find common ground. Obama <span style="color: #1f497d;"><a href="http://politicalticker.blogs.cnn.com/2013/03/07/obama-dinner-with-republicans-signals-shift-in-approach/?hpt=hp_t2"><span style="color: blue;">dined with key Republican senators</span></a></span> Wednesday and had lunch with Budget Committee Chairman Congressman <b>Paul Ryan</b> and ranking member <b>Chris Van Hollen</b> on Thursday. Speaker <b>Boehner</b> expressed positive feelings about the outreach. Senator <b>Mike Johanns</b> stated that ‘His goal is ours. We want to stop careening from crisis to crisis.’ Ryan and Senate Budget Chair <b>Patty Murray</b> are the <span style="color: #1f497d;"><a href="http://www.washingtonpost.com/business/economy/paul-ryan-patty-murray-hold-the-keys-to-any-budget-deal/2013/03/06/6d1ae8b0-8688-11e2-9d71-f0feafdd1394_story.html"><span style="color: blue;">key lawmakers</span></a></span> to make a deal happen.<b><o:p></o:p></b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigjky4zOOl4vFRbEoT8cQkl8oRAI3U9swma8UQNYwWRgX0udGzUKOFDjlWc7pJyXa7dJ8bdlev_i0EabJs4HD5rCnr4twQbZaTignryQZrBaFBp6VPnFCXDCPklarZARfIdkhDB59cUkTD/s1600/2.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" psa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigjky4zOOl4vFRbEoT8cQkl8oRAI3U9swma8UQNYwWRgX0udGzUKOFDjlWc7pJyXa7dJ8bdlev_i0EabJs4HD5rCnr4twQbZaTignryQZrBaFBp6VPnFCXDCPklarZARfIdkhDB59cUkTD/s200/2.jpg" width="200" /></a><v:shape alt="Description: http://static5.businessinsider.com/image/5137c9c269bedd690c000015-900-675-400-/rand-paul-filibuster-1.jpg" href="http://www.google.com/url?sa=i&rct=j&q=rand+paul&source=images&cd=&cad=rja&docid=DPXg6j5nm_pIgM&tbnid=UmNj6hC_d6tXnM:&ved=0CAUQjRw&url=http://www.businessinsider.com/rand-paul-filibusters-john-brennan-2013-3&ei=TQ46UYqmHqnk2wX25YDwBw&bvm=bv.43287494,d.b2I&psig=AFQjCNFS11hlzUtA-Sf5My54_ML3T9WBcQ&ust=1362845612925160" id="irc_mi" o:button="t" o:spid="_x0000_s1028" style="height: 120.2pt; margin-left: 0px; margin-top: 56.05pt; mso-height-percent: 0; mso-height-relative: page; mso-position-horizontal-relative: text; mso-position-horizontal: left; mso-position-vertical-relative: text; mso-position-vertical: absolute; mso-width-percent: 0; mso-width-relative: page; mso-wrap-distance-bottom: 0; mso-wrap-distance-left: 9pt; mso-wrap-distance-right: 9pt; mso-wrap-distance-top: 0; mso-wrap-style: square; position: absolute; rotation: -324586fd; visibility: visible; width: 160.55pt; z-index: 251662336;" type="#_x0000_t75"><v:fill o:detectmouseclick="t"></v:fill><v:imagedata o:title="rand-paul-filibuster-1" src="file:///C:\Users\KATHER~1.FRI\AppData\Local\Temp\msohtmlclip1\01\clip_image002.jpg"></v:imagedata><w:wrap type="square"></w:wrap></v:shape><b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">Old Fashioned Filibuster</span></u></b><b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">! </span></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"> There is a lot of complaining about the Senate filibuster in large part because Senators stop business simply by threatening one. Senator <b>Rand Paul</b> (and likely 2016 presidential candidate) this week decided to do it the <span style="color: #1f497d;"><a href="http://www.politico.com/story/2013/03/the-back-to-the-future-filibuster-88593.html"><span style="color: blue;">old-fashioned (and intended) way</span></a></span> – he spent nearly 13 hours on the Senate floor to filibuster and apparently only ended it due to nature calling. His effort, however, wasn’t considered favorably by two of his GOP colleagues, Senators McCain and Graham, who clearly <span style="color: #1f497d;"><a href="http://www.washingtonpost.com/blogs/post-politics/wp/2013/03/07/mccain-and-graham-attack-rand-pauls-filibuster/?wprss=rss_election-2012"><span style="color: blue;">made their views known</span></a></span> afterward.<b><u><o:p></o:p></u></b></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">Obamacare notes</span></u></b><b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">?</span></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"> The Federal Reserve <span style="color: #1f497d;"><a href="http://thehill.com/blogs/healthwatch/health-reform-implementation/286615-fed-says-obamas-health-law-leading-to-layoffs"><span style="color: blue;">Beige Book</span></a></span> reports that in some areas of the country, the Affordable Care Act is being cited as the reason for some layoffs. And freshman Senator <b>Ted Cruz</b> is renewing the now-pretty-dormant push to de-fund the health law.<b><u><o:p></o:p></u></b></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">The Cuban Missile Crisis ‘myth.</span></u></b><b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">’</span></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"> Yes, this is random, but it caught my eye. A <span style="color: #1f497d;"><a href="http://www.minnpost.com/eric-black-ink/2013/03/most-what-you-know-about-cuban-missile-crisis-wrong"><span style="color: blue;">new book</span></a></span> explores what went down in the Cuban Missile Crisis based on recordings of actual proceedings, asserting that RFK’s book ’13 Days’ essentially established a myth around the crisis.<o:p></o:p></span></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"><o:p><span style="text-decoration: none;"></span></o:p></span></u></b></div>
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<b><u><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">St. Patrick’s Day. </span></u></b><span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;"> The National Retail Federation estimated that Americans spent around <a href="http://www.huffingtonpost.com/2012/03/13/st-patricks-day-spending_n_1341661.html"><span style="color: blue;">$4.6 billion</span></a> on St. Patrick’s Day in 2012. The National MS Society spends approximately $45 million per year on research and the federal government spends another $130 million or so. <b><span style="color: #00b050;">That means that on one day, Americans spend enough to fund the combined Society/Federal government MS research efforts for over 26 years</span></b> . . . that’s a bit sobering, huh!</span></div>
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<span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">--</span></div>
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<span style="font-family: 'Myriad Web','sans-serif'; font-size: 12pt;">Have a great week!<o:p></o:p></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-75070256918185695242013-02-25T10:30:00.000-05:002013-02-25T10:30:22.468-05:00FEDERAL FRIDAYS<!--[if !mso]>
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<span style="font-size: large;"><span style="font-family: inherit;"><span>Hi
all – I could have called this the <i>‘Countdown to Sequester’</i> edition but
thought better of it. Who knows, maybe they will kick the sequester can
down the road another month or two!</span></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span><span style="text-decoration: none;"><br /></span></span></u></b></span></span></div>
<span style="font-size: large;"><span style="font-family: inherit;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir2eSlOBkX8SOCV-fKMtjBByFR9gF_J63mWZ48RSO-khy3WV9uJ-zXtb_ceYUWC2WQGPZxUt9WTRnjqtjIwLZk_jk8Fsjt51PCEad1gaQzUNB-Ce80evWmx7P67GwsuYXJc2mNg4KDRhgC/s1600/1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEir2eSlOBkX8SOCV-fKMtjBByFR9gF_J63mWZ48RSO-khy3WV9uJ-zXtb_ceYUWC2WQGPZxUt9WTRnjqtjIwLZk_jk8Fsjt51PCEad1gaQzUNB-Ce80evWmx7P67GwsuYXJc2mNg4KDRhgC/s200/1.jpg" width="153" /></a><span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>President’s
Day – Fun Facts.</span></u></b><span>
Monday we observed the holiday and this week I ran across <a href="http://www.census.gov/newsroom/releases/archives/facts_for_features_special_editions/cb13-ff05.html">this
</a></span><map name="MicrosoftOfficeMap0"><area coords="8, 1, 0, 82, 71, 90, 80, 8, 8, 1" href="http://upload.wikimedia.org/wikipedia/commons/f/f9/George_Clinton_by_Ezra_Ames_(full_portrait).jpg" shape="Polygon"></area></map><a href="http://www.census.gov/newsroom/releases/archives/facts_for_features_special_editions/cb13-ff05.html"><span>U.S. Census
tidbit</span></a><span>
about how many places are named after presidents. Benjamin Franklin,
while never a president, ranks as second most named after. Interestingly
‘Clinton’ is at #7 however this survey doesn’t identify whether the entity was
named after the actual president (remember our fourth <a href="http://en.wikipedia.org/wiki/George_Clinton_(vice_president)">Vice
President George Clinton</a> was also a six term, non-consecutive, Governor of
NY serving a total of 21 years, plus his two stints as VP under different
presidents). For other trivia you can buy a copy of <a href="http://www.smithsonianbooks.com/usersection/BookDetails.aspx?bid=369">“The
Smithsonian Book of Presidential Trivia”</a> released last month.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>State
of the Union ‘Dumb Down’</span></u></b><span> <a href="http://www.guardian.co.uk/world/interactive/2013/feb/12/state-of-the-union-reading-level">The
Guardian</a> took a look at all of the states of the union and gave them a
reading level score. The highest? James Madison at 21.6. The
dumbest? George H.W. Bush at 8.6 with Barack Obama next at 9.2.
George Washington scores pretty well, coming in at 11<sup>th</sup> highest out
of the 41 addresses.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Mapping
the Human Brain</span></u></b><span>.
President Obama <a href="http://www.nytimes.com/2013/02/18/science/project-seeks-to-build-map-of-human-brain.html">announced
plans</a> for an ambitious program to map the human brain, putting the kind of
muscle needed to achieve results similar to the human genome project.
This effort could provide a significant research boost for diseases like
Parkinson’s, MS and Alzheimer’s to name a few. The human genome project
cost approximately $3.8 billion but in a 2010 study it was found that $800
billion in economic activity had been generated because of the project.</span></span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4nEnBJIrvS4lLhylEbUWFMCZ8ubC4XowFy1t2wEfg-WPvL2aDXcC7M0h4x4J5PkMyoVaGvwW5OV_LYxxHWmxlamWtElpzwDTUumBtRcr_ZU6iL-GYpWSiB9QWlJlDSE8hvepx710wOrsR/s1600/2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="137" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4nEnBJIrvS4lLhylEbUWFMCZ8ubC4XowFy1t2wEfg-WPvL2aDXcC7M0h4x4J5PkMyoVaGvwW5OV_LYxxHWmxlamWtElpzwDTUumBtRcr_ZU6iL-GYpWSiB9QWlJlDSE8hvepx710wOrsR/s200/2.jpg" width="200" /></a><span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Sequestration
on (everyone’s) mind.</span></u></b><span> At least in DC it is – barring a last minute
deal that doesn’t look forthcoming, automatic spending cuts will start on March
1. Approximately $85 </span><map name="MicrosoftOfficeMap1"><area coords="17, 0, 1, 46, 73, 72, 90, 27, 17, 0" href="http://www.google.com/url?sa=i&rct=j&q=&esrc=s&frm=1&source=images&cd=&cad=rja&docid=wYaP6FugghOW3M&tbnid=KwImlEdH8ae6dM:&ved=0CAUQjRw&url=http://www.colourbox.com/image/old-rusty-meat-cleaver-on-white-image-5056960&ei=4OUjUZnODeHqiQKhwYDYCA&bvm=bv.42661473,d.cGE&psig=AFQjCNFFW0dcork436j-5qbNn596VDLhiA&ust=1361393433770934" shape="Polygon"></area></map><span>billion in cuts, $46 billion of which will come from
defense spending. Some are saying this is the best of the worst proposals
out there, others predict the cuts will last for a few weeks until the public
anger flares giving Congress the impetus to act. The House GOP <a href="http://thehill.com/homenews/house/283683-gop-lawmakers-dont-fear-political-impact-of-sequester-taking-effect">doesn’t
fear</a> any blowback on the cuts. In the meantime the president is
ramping up pressure for a <a href="http://www.washingtonpost.com/business/economy/obama-to-press-for-sequester-fix/2013/02/19/e647cd70-7a5d-11e2-82e8-61a46c2cde3d_story.html">‘sequester
fix.’</a> This week he said sequester would be like taking a <a href="http://thehill.com/homenews/administration/283747-obama-says-sequester-would-take-meat-cleaver-to-government">‘meat
cleaver’</a> to the budget. NIH Director Collins is mincing no words,
stating that these are just <a href="http://www.washingtonpost.com/local/dumb-budget-cuts-would-slow-promising-research-on-flu-cancer-other-diseases/2013/02/13/80634fac-761b-11e2-8f84-3e4b513b1a13_story.html?hpid=z4">‘dumb’
cuts</a>. </span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Obama
Outreach.</span></u></b><span>
The most recent development is that President Obama <a href="http://thehill.com/homenews/administration/284253-obama-reaches-out-to-boehner-mcconnell-on-sequester">made
calls</a> to Speaker Boehner and Minority Leader McConnell to discuss
sequestration and what can be done to avoid it. The White House <a href="http://www.whitehouse.gov/the-press-office/2013/02/08/fact-sheet-examples-how-sequester-would-impact-middle-class-families-job">published
its view</a> of the impact of sequestration on its website.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Research
Funding Threat.</span></u></b><span>
Should the sequestration happen, agencies will be directed to cut budgets by a
certain amount. There is a real threat however in that the agencies have
flexibility to choose what to cut so for example, CDMRP programs in the
Department of Defense could be zeroed out in a worst-case scenario. NIH
will be able to choose which of its institutes to trim which will determine
which research projects continue unchanged, or changed.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Retirements.</span></u></b><span> Our 2011
Senator of the Year, Mike Johanns of Nebraska, <a href="http://thehill.com/blogs/ballot-box/senate-races/283667-sen-johanns-to-retire-in-2014">announced</a>
last weekend that he is not seeking re-election. This is his first term
in the Senate and he previously served as Governor and U.S. Secretary of
Agriculture.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>HUD-HHS
Rental Assistance Partnership for Persons with Disabilities</span></u></b><b><span>. </span></b><span>February 12
Departments of Housing and Urban Development (HUD) and Health and Human
Services (HHS) announcement. The 13 states are California,
Delaware, Georgia, Illinois, Louisiana, Massachusetts, Maryland, Minnesota,
Montana, North Carolina, Pennsylvania, Texas and Washington. <a href="http://www.hhs.gov/news/press/2013pres/02/20130212b.html">Learn more here</a>.</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Not
a Cure for Death, but . . . </span></u></b><span> <a href="http://view.liebertpubmail.com/?j=fe6917707761037d7717&m=ff281776736c&ls=fdc01573766403797011787d67&l=fe5f157877620c787714&s=fe2e10787662057d771776&jb=ffcf14&ju=fe231775706700797c1d72&r=0">New
research shows</a> that as a person consumes more coffee, he or she puts off
their own mortality. Can’t wait to see the new ad campaigns coming out of
Starbucks, Seattle’s Best, Caribou, etc.!</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u><span>Public
Policy Conference.</span></u></b><span> The National MS Society Public Policy
Conference is right around the corner and we’re pleased that former <b>Senator
Byron Dorgan</b>, former founding co-chair of the MS Caucus, will join us to
kick it off! Also, nationally renowned pollster <b>Celinda Lake</b> will
be our lunch speaker on March 5. Looking forward to seeing 300+
Activists, and the wave of orange on the Hill March 6!</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><b><u>Health
Reform Implementation News:</u></b><b><u><span></span></u></b></span></span></div>
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<ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><b><span>HHS Issues Final
Rule on the Essential Health Benefits: </span></b><span>Many MS
activists have been involved in the complex process of defining the ‘essential
health benefits’ that all individual and small group health plans will have to
cover in new plans sold in their state in 2014 and beyond. Tens of
thousands of stakeholders submitted formal comments to HHS as they crafted the
federal regulations outlining them, and clarifying the federal government’s
role vs. the states. With the release of HHS final rule yesterday, it
seems the federal government’s role is nearly complete. Read about it <a href="http://cciio.cms.gov/resources/factsheets/ehb-2-20-2013.html">here</a>.
</span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;"><span> </span></span></span><ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span></span><b><span>Confused about
Medicaid </span></b><span>and
its role in implementing the Affordable Care Act? You’re not alone!!<b> </b>So,
the Centers for Medicare and Medicaid published this new list of <a href="http://medicaid.gov/State-Resource-Center/Frequently-Asked-Questions/CMCS-Ask-Questions.html">Frequently
Asked Questions</a>. </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;"><span> </span></span></span><ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span></span><b><span>State
Pre-Existing Condition Insurance Pools No Longer Accepting New Enrollees</span></b><span>:
Because the ACA’s requirement that health insurers must accept
applicants regardless of their pre-existing condition doesn’t go into effect
until 2014, the ACA included a special health insurance program for un-insured
people as a stop-gap measure to tie them over. Known as the Pre-Existing
Condition Insurance Program (PCIP) these temporary health plans were always
intended to fade out when their enrollees gained new coverage options in
2014. That <a href="http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/">phase
out</a> process has now begun with the announcement that the PCIPs are set to
stop accepting new applicants on March 2, 2013. Existing enrollees will
continue to be covered until next year. </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;"><span> </span></span></span><ul>
<li><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span></span><b><span>Who Will Do a
Better Job Running an Exchange</span></b><span> -- States or the Feds? <a href="http://www.washingtonpost.com/politics/federal_government/states-or-the-feds-who-will-do-a-better-job-covering-uninsured-americans-under-obamas-law/2013/02/16/075d874a-7818-11e2-b102-948929030e64_story.html">Interesting
question</a>. </span></span></span></li>
</ul>
<span style="font-size: large;"><span style="font-family: inherit;"><span> </span></span></span><ul>
<li><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihlngKeIM0uGNKxVcUfKntotBCo-Iu8v47fjMXH_mBPRLOYNMrsNeTZAudBg4NSU1Fbo7OOBgUDYwXTGvaxSVUo7p9YcytX-aEBsPNcIOPnUJZ2U4S4Vm5KwcLFC1XCnc6dGUOyc46iXf3/s1600/3.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="189" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihlngKeIM0uGNKxVcUfKntotBCo-Iu8v47fjMXH_mBPRLOYNMrsNeTZAudBg4NSU1Fbo7OOBgUDYwXTGvaxSVUo7p9YcytX-aEBsPNcIOPnUJZ2U4S4Vm5KwcLFC1XCnc6dGUOyc46iXf3/s200/3.jpg" width="200" /></a><span style="font-size: large;"><span style="font-family: inherit;"><span><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span></span><b><span>Florida in?</span></b><span> Governor Rick
Scott of Florida is the most recent governor to announce support for <a href="http://www.miamiherald.com/2013/02/20/3244176/fla-medicaid-privatization-plans.html">expanding
Medicaid</a> in his state. He was one of the most vocal opponents of
Medicaid expansion and the Florida Attorney General played a key role in the
lawsuit that resulted in the Supreme Court saying that expansion needed to be
optional.</span></span></span></li>
</ul>
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<span style="font-size: large;"><span style="font-family: inherit;"><span> By the next issue
of Federal Fridays, we’ll know whether Congress and the Administration averted
yet another potential</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;"><span>budget/fiscal/economic crisis. I’d ask your opinion
of that however I have a feeling I know what most non-elected people feel already!</span></span></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-32787126818734282852013-02-14T09:56:00.001-05:002013-02-14T09:56:42.626-05:00RESPITE CARE VOUCHERS: A MAJOR VICTORY FOR MS ACTIVISTS AND VIRIGNIA FAMILIES<!--[if gte mso 9]><xml>
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</span></span><div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">Virginia’s Department of Aging and Rehabilitative Services
made a big announcement last week, reporting that caregivers for a loved one
with disabilities or chronic illness in Virginia could apply for vouchers up to
$400 to help pay for respite care. This is positive, real world impact stemming
from the excellent work of MS activists.<span> </span></span></span></div>
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<br /></div>
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<span style="font-size: large;"><span style="font-family: inherit;">The state’s grant is funded by the Lifespan Respite Care
Program, a federal program which provides grants to state agencies to ensure
that quality respite is available for family caregivers across the lifespan. Every
year, MS activists advocate for Congress to fund the Lifespan Respite Care
Program. <span> </span>Since it has been funded the
past few years, Virginia was able to apply for and receive this grant funding
that is now supporting family caregivers in the state.</span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;">Virginia’s family
caregivers are not alone. According to a 2011 AARP report, 61.6 million family
caregivers provided care at some point during 2009. This includes family
members of people with MS, as well as many other conditions and diseases.
Family caregivers enable loved ones to stay at home, keep families healthy and
save the system money. The value of family caregivers’ uncompensated services is
estimated to be $450 billion a year.</span></span></div>
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</span></span><div class="MsoNormal">
<span style="font-size: large;"><span style="font-family: inherit;">Activists in Virginia attended <span>Virginia Caregiver Coalition meetings and met with various
public officials such as the Commissioner of the Department of Rehabilitative
Services to highlight the need for this grant and urged them to apply for
federal funding. Congrats to these activists and the state—their advocacy
efforts made a difference!</span></span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;">The grant will distribute vouchers until the end of July in
Virginia and the Department of Aging and Rehabilitative Services estimate that
as many as 450 families could be served through this grant.</span></span></div>
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<span style="font-size: large;"><span style="font-family: inherit;">If you are resident of Virginia and are interested in
applying for a voucher, please click <a href="http://www.vadars.org/services.htm">here.</a></span></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-24612753979504421492013-02-11T10:13:00.000-05:002013-02-11T10:35:01.723-05:00FEDERAL FRIDAYS<!--[if !mso]>
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<span style="font-family: inherit;"><span style="font-size: large;">Hey
all – here’s the latest Federal Fridays and I think there’s a lot of good stuff
in this edition including reference to a <b><i>Unicorn</i></b> . . . yes,
Unicorns. The ongoing budget battles, state of the Union, sequestration
and several items pertaining to telemedicine/telehealth are part of this
edition so enjoy a cup of coffee and have a quick read. And for those
interested in health reform implementation items, be sure to scroll to the
bottom for recent updates. </span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>State
of the Union.</u></b>
Next week President Obama gives his <a href="http://www.latimes.com/news/politics/la-pn-obama-previews-state-of-the-union-20130207,0,4403516.story">state
of the Union</a> and it sounds like he’s in combat mode about the sequester and
the GOP controlled House of Representatives. Note that if nothing is
done, automatic spending cuts begin March 1 – a year of cuts crammed into a 6
month time frame. Efforts are underway by the Administration to propose a
smaller package of cuts to buy more time for a ‘big solution’ and Congress is
preparing a ‘continuing resolution’ to keep government open while it continues
to try and hammer out a solution.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Deficit is
shrinking, but . . .</u></b> You remember Harry S Truman’s desire for a
one handed economist right? Well, the CBO reports that the <a href="http://www.washingtonpost.com/business/deficits-will-fall-to-less-than-1-trillion-in-2013-cbo-reports/2013/02/05/ec964f76-6fbd-11e2-8b8d-e0b59a1b8e2a_story.html?hpid=z2">deficit
is shrinking</a> however there are <a href="http://www.washingtonpost.com/blogs/wonkblog/wp/2013/02/06/the-most-depressing-graph-in-the-new-cbo-report/">mixed
results</a> when looking deeper into the longer-term situation. (And if
you don’t know about the one handed economist reference, Google it!)</span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi42SbfIZ2skdJtKCcCnUwCOunm9Gr4QY3YC0QGJG1I5MMZ0bklbz8FbkfBcbq5igXd8V-6wLNbG0RWruwz72kvg40kUfguknJLXqnIX0lolL1qhssXHLJoBjGkfho0HMuNzjh78tAI5t5Y/s1600/1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="384" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi42SbfIZ2skdJtKCcCnUwCOunm9Gr4QY3YC0QGJG1I5MMZ0bklbz8FbkfBcbq5igXd8V-6wLNbG0RWruwz72kvg40kUfguknJLXqnIX0lolL1qhssXHLJoBjGkfho0HMuNzjh78tAI5t5Y/s640/1.jpg" width="640" /></a></div>
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<a href="http://www.cchpca.org/" style="margin-left: 1em; margin-right: 1em;"></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.energytrendsinsider.com/wp-content/uploads/2013/01/unicorn.jpg?00cfb7" style="margin-left: 1em; margin-right: 1em;"></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.blogger.com/blogger.g?blogID=2810036471450306171" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
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<a href="http://www.blogger.com/blogger.g?blogID=2810036471450306171" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
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<a href="http://www.blogger.com/blogger.g?blogID=2810036471450306171" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi42SbfIZ2skdJtKCcCnUwCOunm9Gr4QY3YC0QGJG1I5MMZ0bklbz8FbkfBcbq5igXd8V-6wLNbG0RWruwz72kvg40kUfguknJLXqnIX0lolL1qhssXHLJoBjGkfho0HMuNzjh78tAI5t5Y/s1600/1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><br />
<span style="font-family: inherit;"><span style="font-size: large;"><b><u>20,000
jobs threatened.</u></b>
That’s according to a <a href="http://www.unitedformedicalresearch.com/looming-sequestration-cuts-to-medical-research-threaten-more-than-20000-jobs/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+UnitedForMedicalResearch+%28United+for+Medical+Research%29">study</a>
by <a href="http://www.unitedformedicalresearch.com/wp-content/uploads/2013/02/UMR_Impact_of_Sequestration_2013.pdf">United
for Medical Research</a>, suggesting that if automatic spending cuts take place
beginning March 1, 2013, 20,000 research related jobs could be lost. In <a href="http://www.chicagobusiness.com/article/20130202/ISSUE01/302029969?template=mobile">Illinois</a>
they stand to lose approximately $62 million in NIH research funds. </span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Director’s
Blog, Star-date 2013.</u></b> (okay, really lousy effort at humor).
NIH Director Frances Collins has begun publishing his own blog. You can <a href="http://directorsblog.nih.gov/">check it out here</a> and also sign up to
receive via email. In his blog yesterday he has a <a href="http://directorsblog.nih.gov/wp-content/uploads/2013/02/U.S.MapofClinicalTrials.jpg">chart</a>
showing the number of clinical studies being held in all 50 states ranging from
283 in Wyoming to over 18,000 in California.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Health
Reform 2.0.</u></b>
Former GOP Senator Dave Durenberger penned an op-ed in Politico highlighting
the need for <a href="http://www.politico.com/story/2013/01/checking-the-vitals-of-health-reform-87025.html">additional
reforms</a> to the system including the Medicare payment system, addressing the
high cost of prescription drugs, and creating competition in the increasingly
un-competitive private market.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Office
of Wireless Health</u></b>. California Rep. Mike Honda has introduced a
bill to create <a href="http://blogs.wsj.com/venturecapital/2013/02/06/qa-rep-mike-honda-on-proposed-fda-office-of-wireless-health/?KEYWORDS=health+law">this
office</a> within the FDA. The office would be tasked with regulating the
growing number of mobile, wireless health gadgets and applications.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY6GjRM5W_hP8HEyV6hFH00R6IFZDQsti4lMJCvoKFPE-b708zF6hS3tSPLi1Id9KTBMEMbla_VYfrlgvu7BXGxErbRKXTfwKA3o8I_Kb9xykZ_aLkGe0vc3iIrd4XAdJI2bREqjQpCKmz/s1600/2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY6GjRM5W_hP8HEyV6hFH00R6IFZDQsti4lMJCvoKFPE-b708zF6hS3tSPLi1Id9KTBMEMbla_VYfrlgvu7BXGxErbRKXTfwKA3o8I_Kb9xykZ_aLkGe0vc3iIrd4XAdJI2bREqjQpCKmz/s1600/2.jpg" /></a><b><u>Comprehensive
Telehealth Scan</u></b>.
Thanks to Stewart Ferry from California for sending along a link to this <a href="http://www.cchpca.org/sites/default/files/State%20Telehealth%20Laws%20and%20Reimbursement%20Policies.pdf">comprehensive
scan</a> of the 50 states and DC by the <a href="http://www.cchpca.org/">Center
for Connected Health Policy</a> summarizing where each jurisdiction is on
virtually everything telehealth/telemedicine as it relates to access,
reimbursement, licensure, etc. The Commonwealth Fund published a <a href="http://www.commonwealthfund.org/Publications/Case-Studies/2013/Jan/Telehealth-Synthesis.aspx?omnicid=20">summary
of successes</a> among early adopters of telehealth.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXSNbekQIQWk2_P38HR6180zLKYxoccoxYCttv29VZewdQSaU20xI3-4SkdnmAtcFSrbnzImWB202DQ-YG-otSjBcL1qcdljdqS-PUrpAmKBc-jR4j5XxGkncOquOos8ZKtdMSJI6epwZQ/s1600/3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXSNbekQIQWk2_P38HR6180zLKYxoccoxYCttv29VZewdQSaU20xI3-4SkdnmAtcFSrbnzImWB202DQ-YG-otSjBcL1qcdljdqS-PUrpAmKBc-jR4j5XxGkncOquOos8ZKtdMSJI6epwZQ/s1600/3.jpg" /></a></span></span></div>
<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Senator
‘Unicorn’? Lawmakers Let Their Hair Down</u></b>. Even with
all the budget chaos and political divisions in the country, members of the
House and Senate recently spent some quality time ‘ribbing’ each other at the
Washington Press Club dinner. See some of the zingers <a href="http://thehill.com/blogs/in-the-know/in-the-know/281615-one-liners-galore-at-washington-press-club-dinner">here</a>.
</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Low
Vision Issues?</u></b>
<a href="http://www.nih.gov/news/health/feb2013/nei-01.htm">NIH’s National Eye
Institute</a> has produced a 20 page large print booklet <a href="http://www.nei.nih.gov/lowvision/">“Living with Low Vision”</a> that
includes information on seeking help for low vision as well as tips to maximize
remaining eyesight. 2.9 million Americans live with low vision with an
expected 73% increase by 2030.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Veteran’s
health care.</u></b>
Vet’s groups are lining up to urge Congress and the Administration to <a href="http://www.pva.org/site/apps/nlnet/content2.aspx?c=ajIRK9NJLcJ2E&b=6445883&ct=12945405">make
good</a> on longstanding health care commitments to them and their families.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>A
billion here, a billion there . . .</u></b> Yes, soon it adds up to
real money. A <a href="http://www.usatoday.com/story/news/nation/2013/01/23/veterans-affairs-overpaid-disabled-vets/1859879/">recent
audit</a> found that the VA overpaid disabled vets by nearly $1 billion between
1993 and 2009 and if the agency doesn’t correct the problem, they will overpay
another $1.1 billion by 2016.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Snow
Drought.</u></b>
For our friends in the Northeast this will be of no comfort, but the DC area
has a <a href="http://www.washingtonpost.com/blogs/capital-weather-gang/post/dc-snow-drought-its-worse-than-you-think/2013/02/06/1d889022-700d-11e2-8b8d-e0b59a1b8e2a_blog.html?wpisrc=nl_buzz">‘snow
drought’</a> which comes with side-effects. The area has gone 744 days
without two inches of snow.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>FMLA
turns 20</u></b>.
This week <a href="http://www.dol.gov/dol/media/webcast/20130205-fmla/">President
Clinton</a> was at the U.S. Department of Labor celebrating 20 years since he
signed the Family and Medical Leave Act into law. It was a significant
advancement in worker’s rights however one analysis suggests that the U.S.
seriously <a href="http://www.thenation.com/blog/172660/twenty-years-after-fmla-our-family-leave-policies-are-dragging-us-down">lags
the rest</a> of the other high income nations when it comes to leave. Lag
is apparently an understatement though, we’re dead last. </span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>‘Activated
Patients’ fare better.</u></b> A <a href="http://www.commonwealthfund.org/Publications/In-the-Literature/2013/Feb/Patients-with-Lower-Activation.aspx?omnicid=20">recent
study</a> showed that patients who participated in treatment decisions and took
part in managing their own care―had
significantly lower costs than those who were the least activated.</span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><br /></span></span></div>
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<span style="font-family: inherit;"><span style="font-size: large;"><b><u>Health
Reform Implementation News:</u></b></span></span></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<ul>
<li><span style="font-family: inherit;"><span style="font-size: large;"><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span><b>Projecting the
ACA’s impact:</b>
<a href="http://www.bloomberg.com/news/2013-02-05/obama-s-health-insurance-expansion-eroding-cbo-projects.html">New
projections</a> by the Congressional Budget Office suggest fewer of the currently
un-insured will gain coverage, at least in the first few years. Their
most recent projections suggest approximately 27 million are likely to gain
coverage by 2017, a full five million less than projected a year ago. </span></span></li>
</ul>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<ul>
<li><span style="font-family: inherit;"><span style="font-size: large;"><span style="font-size: large;"><b>New Q and A on
Medicaid and the ACA</b>:
HHS issued a five page <a href="http://www.medicaid.gov/State-Resource-Center/Frequently-Asked-Questions/Downloads/ACA-FAQ-BHP.pdf">Q
and A</a> updating and clarifying some pretty complex Medicaid topics.
Fortunately, ACA guru and Washington & Lee Law Professor <a href="http://healthaffairs.org/blog/2013/02/07/implementing-health-reform-the-basic-health-program-and-federal-medicaid-matching-rates/">Tim
Jost blogged about it</a> so regular folks have a better shot at actually
understanding it. </span></span></span></li>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span></ul>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<ul><span style="font-family: inherit;"><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNkgqXKCGFLN13LX5zWmfaJqq43JTCLjcHOjSKY0lSP_QJTEsNquGd3btpNQv8SpLaRGP8PT3MdFDr-blCTBwjcOT0sYAzRyEtANZq-eIBM7RB-e0GcWd2J7umRClZS60iYHccphXCDibB/s1600/5.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNkgqXKCGFLN13LX5zWmfaJqq43JTCLjcHOjSKY0lSP_QJTEsNquGd3btpNQv8SpLaRGP8PT3MdFDr-blCTBwjcOT0sYAzRyEtANZq-eIBM7RB-e0GcWd2J7umRClZS60iYHccphXCDibB/s1600/5.jpg" /></a></span></span>
<li><span style="font-family: inherit;"><span style="font-size: large;"><b>Let the Sun Shine In</b>! Part of
the Affordable Care Act was designed to allow anyone to look up which doctors
are getting how much from which companies. But regulators have had so
much on their hands, that the so-called <a href="http://www.theatlantic.com/health/archive/2013/02/what-the-sunshine-act-means-for-health-care-transparency/272926/">‘Sunshine
Act’</a> was put on the back-burner for a while. New regulations issued
this week were welcomed as one of the ACA’s more important transparency
measures. The law firm Holland & Knight <a href="http://www.hklaw.com/publications/cms-issues-final-physician-payment-sunshine-rule-02-04-2013/">posted
this analysis</a>.</span></span></li>
</ul>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<ul><span style="font-family: inherit;"><span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0PDU9LIaIBjrlAED5-YynlAJbCcueaMz5isSvmWMdwZ6_bi_QKDcEdSc07OsUfl9RIMobJxwyeLeiXPbuqV9YcTf9mE3hPkjwAz-NoAf-QbWv24Fqb2KhasoC5HAMqJFKNnfRx-3rICQF/s1600/6.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0PDU9LIaIBjrlAED5-YynlAJbCcueaMz5isSvmWMdwZ6_bi_QKDcEdSc07OsUfl9RIMobJxwyeLeiXPbuqV9YcTf9mE3hPkjwAz-NoAf-QbWv24Fqb2KhasoC5HAMqJFKNnfRx-3rICQF/s1600/6.jpg" /></a>
</span></span>
<li><span style="font-family: inherit;"><span style="font-size: large;"><b><span style="font-size: large;">HHS Rejects Mississippi’s Exc</span>hange
Proposal</b>:
The <a href="http://capsules.kaiserhealthnews.org/index.php/2013/02/hhs-denies-mississippis-bid-to-run-its-own-exchange/">Administration’s
rejection</a> of the state’s bid to run its own exchange means it will have to
run a Federally-facilitated exchange instead. </span></span></li>
</ul>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<ul>
<li><span style="font-family: inherit;"><span style="font-size: large;"><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span><b>Tracking
Medicaid Expansion Decisions</b>: Check out the <a href="http://www.statereforum.org/medicaid-expansion-decisions">chart</a> in
the National Academy for State Health Policy’s most recent e-news.
</span></span></li>
</ul>
</div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.cchpca.org/" style="margin-left: 1em; margin-right: 1em;"></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.energytrendsinsider.com/wp-content/uploads/2013/01/unicorn.jpg?00cfb7" style="margin-left: 1em; margin-right: 1em;"></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.blogger.com/blogger.g?blogID=2810036471450306171" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a></div>
<span style="font-family: inherit;"><span style="font-size: large;"><span style="font-size: large;">---</span> </span></span><br />
<span style="font-family: inherit;"><span style="font-size: large;">Have a great week! If anyone wants to <span style="font-size: large;">help the <span style="font-size: large;"><i>'Won</i><span style="font-size: large;"><i>ky Walkers<span style="font-size: large;">'</span></i> Walk MS team, please feel free to click<span style="font-size: large;"> </span></span></span></span></span></span><span style="color: blue;"><span style="font-family: inherit;"><span style="font-size: large;"><b><a href="http://main.nationalmssociety.org/site/TR?px=8826038&pg=personal&fr_id=19505">here.</a></b></span></span></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-2755620877737931532013-02-05T11:51:00.000-05:002013-02-07T09:00:08.014-05:002013 PPC IS AROUND THE CORNER<!--[if gte mso 9]><xml>
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<span style="font-family: inherit;"><span style="font-size: large;">The National MS Society’s 22nd annual Public Policy Conference
(PPC) is only a month away!<span style="color: black;"> For those of you who
don’t know, the PPC brings over 300 MS activists to Washington, D.C. to educate
members of Congress about MS and about federal issues and budget matters that
are important to the MS community.</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: large;"><span style="color: black;">Medical research funding is seriously threatened in
the current economic climate, so at the 2013 PPC, MS activists will speak to
their federal legislators about the need to protect MS research funding. MS
research funding both through the National Institutes of Health (NIH) and the
Congressionally Directed Medical Research Programs (CDMRP) help us better
understand MS and fuel future </span>solutions to STOP MS in its tracks, RESTORE
lost function and END MS forever. MS activists will also talk about the
importance of funding for the Food and Drug Administration (FDA), which ensures
that drugs and medical devices are safe and effective for public use and
provides patients with confidence in new technology. <span style="color: black;">In
addition to supporting our this funding, MS activists will urge their legislators
to join the Congressional MS Caucus and support MS Awareness Week, which takes
place the week after the PPC.</span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: large;">
</span></span><br />
<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: inherit;"><span style="font-size: large;">This month, we will be
highlighting stories of those who have declared themselves MS activists and will
talk about how their lives have been affected by research, therapies and
technology. We hope that these stories strengthen and inspire you as we move
forward towards the PPC. Not coming to
the PPC but want to be involved? Great! Help us by sharing your story about MS
research or why more effective therapies are important to you. Click<span style="color: black;">
<a href="http://www.nationalmssociety.org/MyStory">here</a> </span>to share your story.
We’ll give you many other opportunities leading up to the PPC and afterward to
engage. </span></span></div>
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</span></span><br />
<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: inherit;"><span style="font-size: large;">If you are headed to the PPC, we cannot wait to see you! Please
start thinking about what MS research, increased understanding of the disease
and more effective therapies mean to you and your loved ones to help tell your
important story to your federal legislators.</span></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com4tag:blogger.com,1999:blog-2810036471450306171.post-79004528671247093292013-01-28T09:56:00.001-05:002013-01-28T09:56:58.214-05:00FEDERAL FRIDAYS<!--[if !mso]>
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<span style="font-size: large;">Happy
Friday all – well, Washington saw its first dusting of snow which followed the
coldest air temps in two years. The inaugural was spared the extremes as
the clouds lifted after the president’s speech, and the sun began to
shine. Now the real work begins (again) as our elected officials try to
get something done on the budget, gun control, and a host of other important
subjects. New cabinet members are being announced and confirmation
hearings have begun. Secretary Sebelius has announced that she plans to
remain head of HHS so the health arena should remain steady-as-she-goes!</span></div>
<div align="center" class="MsoNormal" style="font-family: inherit; text-align: center;">
<span style="font-size: large;">
<hr align="center" size="3" width="100%" />
</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u><span style="text-decoration: none;"><br /></span></u></b></span></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzVAlzvruKWaUTRcrIzuDyiqghsNicw_UP8z_B1iV-j21woSjIQqzWY0xSkuEMhdwdJnZi4zZUoIt7njAci4KSRcfgXNXAR3uy4O6VgPy_Jgm1Yfl2E74AqR7ZryTT8onCK5cI4dkkvNt6/s1600/1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzVAlzvruKWaUTRcrIzuDyiqghsNicw_UP8z_B1iV-j21woSjIQqzWY0xSkuEMhdwdJnZi4zZUoIt7njAci4KSRcfgXNXAR3uy4O6VgPy_Jgm1Yfl2E74AqR7ZryTT8onCK5cI4dkkvNt6/s200/1.jpg" width="139" /></a><b><u>57<sup>th</sup>
Presidential Inauguration</u></b>. Around 1 million people were in
Washington to witness President Obama’s second inauguration, up significantly
from the original estimates of 400,000 to 600,000. The president <a href="http://www.latimes.com/news/nationworld/nation/la-na-inaug-obama-20130122,0,3578109.story">outlined
his vision</a> for the next four years and beyond during his inaugural
address. The New York Times has this <a href="http://www.nytimes.com/packages/html/politics/20130121-inauguration/obama-inauguration-zoomer-2013.html">chart
of VIPs</a> up on stage with the president.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>‘Profound
& Devastating Blow.’</u></b> That’s how <a href="http://tinyurl.com/bckptms">NIH Director Francis Collins</a> describes
the looming sequestration. The Office of Management and Budget (OMB) has
directed agencies to start preparing for the automatic cuts. They are set
to occur April 1<sup>st</sup> unless Congress takes action. </span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>Legal
Ruling on Unlicensed Stem Cells.</u></b> A recent <a href="http://journals.lww.com/neurotodayonline/Fulltext/2013/01170/Legal_Ruling_Puts_the_Brakes_on_Unlicensed_Stem.7.aspx">court
ruling</a> puts the breaks on use of unlicensed stem cells therapies for
conditions, including MS, that many neurologists refer to as the ‘wild West’.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>IRS
Proposes new Health Regs for business</u></b>. Implementation of the
Affordable Care Act isn’t only about what the Department of Health and Human
Services does, it’s the <a href="http://www.washingtonpost.com/business/on-small-business/new-regulations-shed-light-on-looming-health-care-reform-costs-for-business-owners/2013/01/16/a5afa490-5f5a-11e2-b05a-605528f6b712_story.html">IRS</a>
as well as it proposes new regulations for employer sponsored health plans.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>That’ll
be 10.3 miles please</u></b>. Any Big Mac meal lovers out there (other
than me)? Well, it’s a value meal item making it affordable but any idea
how many miles it takes to burn off the calories of a Big Mac and medium
fries? <a href="http://www.idahostatesman.com/2013/01/21/2419864/menu-calories-and-miles-to-go.html">You
guessed it</a> – 10.3 miles. </span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
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<span style="font-size: large;"><b><u>Charitable
Giving</u></b>.
The ‘fiscal cliff’ deal of a few weeks ago preserved the charitable deduction
and in fact, one study indicated that the slight tweak it was given may result
in increased donations. However, many in the non-profit world believe the
<a href="http://thehill.com/blogs/on-the-money/domestic-taxes/276793-charities-fear-fiscal-cliff-victory-will-prove-hollow-">threat
has not passed</a>, but rather, that we may all just be lying in wait for the
next battle as the budget war
continues.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVRZt3cg-EVEcKlQxcQuJ1_gMhDZz2GDgWsmhQ8gflLOaOFbz9N2uxnW_pwbx-dK0904_z4g6fbRRv-zhuaXexbjQcJnBC6p_lkThPoyf_D4OJXaWlHqCM_tiT4x0yqi0T6tTcVVpT7VLP/s1600/2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="161" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVRZt3cg-EVEcKlQxcQuJ1_gMhDZz2GDgWsmhQ8gflLOaOFbz9N2uxnW_pwbx-dK0904_z4g6fbRRv-zhuaXexbjQcJnBC6p_lkThPoyf_D4OJXaWlHqCM_tiT4x0yqi0T6tTcVVpT7VLP/s200/2.jpg" width="200" /></a><span style="font-size: large;"> </span></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>Social
Media Tips from HHS</u></b>. The agency has <a href="http://www.newmedia.hhs.gov/blog/create-your-own-hashtag.html">some ideas</a>
for effective use of hashtags for promoting health related issues. </span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidh2xxxtAY_2ou-0vP7UQ7i17sKQ17LMziJnK3nZSTinRGTTIFekpkf-iLsWaL64XMXwjsmMKP5Ney00B_VsJnZYRT26H6a1trp2a4JTLlaQ3n0tr9LNEUAkqMHUu9w91tdDCcFteN-4Rg/s1600/3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="107" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidh2xxxtAY_2ou-0vP7UQ7i17sKQ17LMziJnK3nZSTinRGTTIFekpkf-iLsWaL64XMXwjsmMKP5Ney00B_VsJnZYRT26H6a1trp2a4JTLlaQ3n0tr9LNEUAkqMHUu9w91tdDCcFteN-4Rg/s200/3.jpg" width="200" /></a><span style="font-size: large;"><b><u>Debt
Ceiling, Default and Shutdown</u></b>. The House passed a 3 month lifting
of the debt limit with added incentive that if they don’t
get a deal done, Member of Congress <a href="http://thehill.com/blogs/floor-action/house/278835-house-passes-no-budget-no-pay-sends-to-the-senate">will
not get paid</a> (I hear bi-partisan cheers throughout the country). So
while an official name of such a deal hasn’t surfaced, the subheader might
fictionally read ‘The Congressional Paycheck Protection Act! Senate
Majority Leader Reid said he won’t oppose it and the White House indicated its
support as well. So this will temporarily stop the talk about
whether the United States will default on its $16 Trillion+ debt, whether the
constitution enables the president to <a href="http://www.politico.com/story/2013/01/reid-to-obama-ok-to-skip-congress-on-debt-ceiling-86071.html">ignore
the debt limit</a>, then of course about how great an idea it is to <a href="http://dyn.politico.com/printstory.cfm?uuid=EC16A727-91B2-4C84-A4C4-1A5E703F4A9A">shut
down</a> part or all of the federal government. (Note – on the last
issue, it didn’t work so well in the mid ‘90s for the party in power).</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>A
Looming Thaw?</u></b>
In a hopeful sign, Senate Minority Leader McConnell has extended a bit of
an <a href="http://thehill.com/homenews/administration/277911-sen-mcconnell-seeks-fresh-start-with-president">olive
branch</a> to the president, hoping to be able to work together to solve some
of our nation’s largest challenges.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>Best/Worst
Congressional Bosses</u></b>. Interesting <a href="http://p.washingtontimes.com/news/2013/jan/22/who-are-the-best-and-worst-bosses-on-capitol-hill/?page=3">study</a>
about staff turnover in congressional offices.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>Telemedicine
Red-Tape</u></b>.
Verizon’s EVP penned <a href="http://www.politico.com/story/2013/01/cut-the-red-tape-that-is-shackling-telemedicine-86687.html">this
opinion</a> piece for Politico about how red-tape is tying up the advance of
telemedicine.</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
<div class="MsoNormal" style="font-family: inherit;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghVnoKqNGDrSP3qdzyxDasLF6T81mTIDSt8ckw7kVXjGl553_lQJGTtZHifRZhXcUKZygAT2IrwoVdoQOnnyV6krMU5_H-yFJ1Nn8DOQUjkqCkVZIa6kCOSfwoXFkSXh7p7vRE5GY5oteN/s1600/4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghVnoKqNGDrSP3qdzyxDasLF6T81mTIDSt8ckw7kVXjGl553_lQJGTtZHifRZhXcUKZygAT2IrwoVdoQOnnyV6krMU5_H-yFJ1Nn8DOQUjkqCkVZIa6kCOSfwoXFkSXh7p7vRE5GY5oteN/s200/4.jpg" width="150" /></a><span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"><b><u>Franklin’s
Time Management</u></b>.
No, not Franklin/Covey, Ben Franklin. While he hasn’t uttered a word in
centuries, his <a href="http://www.forbes.com/sites/patbrans/2013/01/01/twelve-time-management-habits-to-master-in-2013/print/">time
management advice</a> is probably more succinct now than ever. The quote
in this graphic is ‘By failing to prepare you are prepared to fail’ which is
on-the-mark!
</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
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<span style="font-size: large;"><b><u><span style="color: #f79646;">Health
Reform Implementation News:</span></u></b></span></div>
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<br /></div>
<ul>
<li><span style="font-size: large;"><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span><b>Healthcare.gov
gets a facelift</b>:
The Obama Administration’s comprehensive <a href="http://www.healthcare.gov/">website</a>
about the Affordable Care Act has a new and improved look. It seems the
term “health insurance exchanges” is out, and <a href="http://www.commonwealthfund.org/Newsletters/Washington-Health-Policy-in-Review/2013/Jan/January-22-2013/Its-Out-With-Exchange-and-In-With-Marketplace.aspx?omnicid=16">“marketplace</a>”
is in! </span></li>
</ul>
<span style="font-size: large;"> </span><ul>
<li><span style="font-size: large;"><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><b>What’s your
favorite metaphor</b>?
Maybe we should be describing health insurance exchanges <a href="http://www.kaiserhealthnews.org/Stories/2013/January/25/colorado-exchange-focus-group.aspx">more
like Turbo Tax</a> than Travelocity. </span></li>
</ul>
<span style="font-size: large;"> </span><ul><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh-LBIp3luM7EMALhG1EBETk4Yoqj29KtPYbqgmuPc11WkbDam1jcSLC-LYZc2uvaV4srhATi3UejbORtjDydj2mXyGSJmdgFolbOsTZuLp50rhEjN_b9wmS0B720BNZV8ZFA6jvPncel1/s1600/5.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhh-LBIp3luM7EMALhG1EBETk4Yoqj29KtPYbqgmuPc11WkbDam1jcSLC-LYZc2uvaV4srhATi3UejbORtjDydj2mXyGSJmdgFolbOsTZuLp50rhEjN_b9wmS0B720BNZV8ZFA6jvPncel1/s1600/5.jpg" /></a>
<li><span style="font-size: large;"><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><b>Really!?! </b> AZ
Governor Jan Brewer’s <a href="http://www.usnews.com/news/politics/articles/2013/01/23/immigration-fallout-from-saying-no-to-obamacare">support</a>
for Medicaid expansion in her state sure surprised a lot of people! Will other
Medicaid expansion opponents follow suit?
</span></li>
</ul>
<span style="font-size: large;"> </span><ul>
<li><span style="font-size: large;"> <span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span><b>Coverage Gaps on
the Horizon?</b>
Could people <b>transitioning from Medicaid to Medicare</b> in a reformed
health care system experience gaps in coverage? Our friends at the
Medicare Rights Center recommend <a href="http://www.commonwealthfund.org/Blog/2013/Jan/How-States-Can-Simplify-Transitions-to-Medicare.aspx?omnicid=16">strategies</a>
for states and advocates to adopt to help make sure people don’t fall through
the cracks unnecessarily. </span></li>
</ul>
<span style="font-size: large;"> </span><ul><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWLE_ldrcz6-ULKIIhftHtfZudNXns6zzIkuBQYGAFk_c-pb8e29MVfbRcv13H3kXMxgTEN-oVME9bqWKxhjAnnMhc7w3xJdC8D3RBhrj-7BlIcAh2iDi9QWv31XteoVNLzF7pB_eoS562/s1600/6.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWLE_ldrcz6-ULKIIhftHtfZudNXns6zzIkuBQYGAFk_c-pb8e29MVfbRcv13H3kXMxgTEN-oVME9bqWKxhjAnnMhc7w3xJdC8D3RBhrj-7BlIcAh2iDi9QWv31XteoVNLzF7pB_eoS562/s1600/6.png" /></a>
<li><span style="font-size: large;"><span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"></span></span><b>More proposed federal
regulations (aka sleep aids). </b>The<b> </b>Public Policy Department<b> </b>is
working in coalition with other disability groups to review and comment on<b> </b> <a href="http://www.commonwealthfund.org/Newsletters/Washington-Health-Policy-in-Review/2013/Jan/January-22-2013/Medicaid-Officials-Release-Rule-Affecting-Cost-Sharing.aspx?omnicid=16">a
474-page </a><a href="http://www.commonwealthfund.org/Newsletters/Washington-Health-Policy-in-Review/2013/Jan/January-22-2013/Medicaid-Officials-Release-Rule-Affecting-Cost-Sharing.aspx?omnicid=16">proposed rule</a> released last
week. As proposed, state officials would be able to charge Medicaid
patients higher cost-sharing for some services than current regulations allow.
The proposed rule also affects a wide range of other Medicaid provisions,
including appeals of eligibility determinations; coordination between Medicaid
and the new health care law's insurance exchanges; the role of counselors to
assist people with their coverage applications; procedures to verify
employer-sponsored coverage; and the use of updated Medicaid eligibility
categories. </span></li>
</ul>
<span style="font-size: large;"> </span><ul>
<li><span style="font-size: large;"> <span><span style="-moz-font-feature-settings: normal; -moz-font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"> </span></span><b>Pre-Existing
Condition Take-Aways.</b>
So what <a href="http://www.commonwealthfund.org/Blog/2013/Jan/Building-State-Health-Insurance-Marketplaces.aspx?omnicid=20">lessons</a>
did we learn from the Pre-Existing Condition Insurance Program that could help
ACA implementation? </span></li>
</ul>
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<span style="font-size: large;">
<hr align="center" size="3" width="100%" />
</span></div>
<div class="MsoNormal" style="font-family: inherit;">
<span style="font-size: large;"> See you after the Super Bowl!</span></div>
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<span style="font-size: large;"> </span></div>
<div class="MsoNormal" style="font-family: inherit;">
<br /></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com0tag:blogger.com,1999:blog-2810036471450306171.post-63921061512097822572013-01-23T12:50:00.000-05:002013-01-23T13:02:18.957-05:00“We Must Act”: OBAMA TOUCHES ON MEDICARE, MEDICAID, AND SOCIAL SECURITY IN INAUGURAL ADDRESS<!--[if gte mso 9]><xml>
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<span style="font-size: large;">On Monday, President Barack Obama was sworn in in front of the
Capitol’s West Front and gave his second inaugural address. If you missed the
address and would like to read it, please click <a href="http://www.nytimes.com/2013/01/21/us/politics/obamas-second-inaugural-speech.html?pagewanted=all&_r=1&">here</a>. </span></div>
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<br /></div>
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<span style="font-size: large;">President Obama’s speech included references to programs important
to people with disabilities--Medicare, Medicaid and Social Security. “<span style="line-height: 115%;">The commitments
we make to each other through Medicare and Medicaid and Social Security, these
things do not sap our initiative. They strengthen us.” As Congress attempts to
avoid scheduled across-the-board budget cuts (the “sequester”) and develop a
comprehensive deficit reduction plan over the next several weeks, it is
possible that changes could be made to these programs.</span></span></div>
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<br /></div>
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<span style="font-family: inherit; font-size: large;"><span style="line-height: 115%;">As the 113<sup>th</sup>
Congress opens and a new presidential term begins, the Society will continue to
urge that Medicare, Medicaid and Social Security remain strong for people with
disabilities.</span></span><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"></span></div>
MS Activisthttp://www.blogger.com/profile/01166485651419984213noreply@blogger.com4