Thursday, June 13, 2013


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), we've 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!

Want News?
The “news” content of this blog will now be featured on our website. From now on, please visit 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:
  • announce or provide summaries of the Society’s large advocacy events and activities
  • highlight MS advocacy progress or successes at the local, state and federal levels. State and local advocacy news will also appear on your chapter’s home page and in local blogs including:
-Washington/Montana/Alaska : "We Move MS"
-North and South Carolina: "activisMS"

Are You a Digital MS Activist? In the spirit of blogging and social media engagement, please become a digital MS activist by following the easy steps at, which includes Twitter lists and hashtags to follow (start with #MSactivist), how to find your public officials on Facebook and more!

Want Updates and Action Alerts? Receive federal advocacy news and opportunities to take action, be sure to join the MS Activist Network .

Craving Personal Stories and Connection? Stories of MS activists and the importance of activism in the MS movement will continue to be featured on our MS Connection blog at: . 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 to share, or connect with others who have similar interests and passions at

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!
The Public Policy Office's blog is "moving" 

Tuesday, June 11, 2013


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.

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.

Julie Baker with a teammate
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.

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 here to find a ride near you. 

MuckFestMS, a mud and obstacle fun-run, is also in full swing for the summer! Click here to see if you can still participate! 

Thank you to all of the riders, volunteers, and cheering fans who help make Bike MS: Ride the Riverside a success!
Saul Pilchen at the finish!
A furry friend cheers on the cyclists!

Wednesday, June 5, 2013


Steve Davis with his NMSS "ACTVST" plate
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.

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.

Liz, Steve, Charlotte, and Joey Davis on "Anderson"

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.
MS activists with Assemblyman Lavine (NY-13)

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!

To read more about the program or to order a National MS Society license plate in New York, please click here.

Other states also offer a similar license plate program in conjunction with the National MS Society, so please contact your local chapter to see if you can order a National MS Society license plate today! 

Wednesday, May 29, 2013


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.

This year, people from all over the world are posting their personal motto as part of World MS Day – so please go to My Motto 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.

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).

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. Click here to ask your Senators to support the CRPD 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!

To find other ways to get involved on World MS Day, please click 


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 Decoration Day to honor Union and Confederate soldiers who died during the civil war?

Be sure to peruse this entire edition – for the first time I have included a tidbit about a creative approach by American Samoa to address an access issue; two tidbits pertaining to Harry S Truman, and under the ACA Implementation News section, there are some important webinar opportunities that may be of interest.  Enjoy!

World MS Day – what’s your motto?  May 29 is World MS Day 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 My Motto 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.

Long-Term Services & Supports Petition.  The Society is pushing out an online petition 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 great blog post by Michael Ogg, an activist from New Jersey with primary progressive MS who is concerned about access to LTSS, and of course sign the petition yourself!

Debt Ceiling fight looms.  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 unified approach, lest he have to rely on Minority Leader Pelosi to deliver them.

Federal Budget Update.  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 putting up roadblocks to having a conference committee to reconcile the House and Senate budgets, and freshman Sen. Ted Cruz announcing that he doesn’t trust his own party in those negotiations.  Meanwhile there are some reasons why getting a budget done this year is attractive (as opposed to passing another ‘continuing resolution’ to keep funding at current levels). 

‘Scandals’.  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 one-liners by Jay Leno recently.

Legislative Update.  Click here to find a summary of legislative issues that we provided recently on a phone call with government relations staff.

Appropriations Committee Targets.  Big, significant cuts 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 this document 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 letter on behalf of over 900 groups highlighting the draconian impact of the budget targets.

Favorite John Boehner Quote:  “It is hard to keep 218 frogs in a wheelbarrow long enough to get a bill passed.”  May 20, 2012 on ABC.

Limits of Telemedicine.  NPR had a Talk of the Nation 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.

Truman’s Yacht rusting away
.  President Harry S Truman used the USS Williamsburg as a floating White House but now it’s just a rusting ghost ship in Italy hoping for new life.

Speaking of the Truman Era . . .
  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.  This story talks about how a British painting played a critical role in AMA’s successful efforts to thwart universal health care in the U.S.

American Samoa’s Frequent Flyers.  The government of American Somoa has established a frequent flyer account to deposit all frequent flyer miles 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.  

Health Reform Implementation News:

  •  Gettin’ Ready!  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 1st launch of the Health Insurance Marketplaces (aka Exchanges) and the major reforms 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.     

  • HHS Explains it all to you.  HHS is offering two free webinars (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 here for dates and links to registration. Please circulate, and note the free e-mail sign-up on bottom of the page.

  • BIG Changes for PCIPs:  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.

      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.   At last count, 10 states planned to maintain their own PCIPs, while enrollees in 17 other states’ programs will be notified their coverage will be switched to the federal PCIP for the remainder of the year.

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.                  

  • Let’s make a Deal:  News is trickling in from the states about their negotiations with insurance companies that want to sell policies through the Exchanges.  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 what they’ll cost.  Inquiring minds that want to know more about states’ efforts to certify health plans may want to check out NASHP’s free 90 minute webinar about Qualified Health Plans on Wednesday, May 29 at 2:30 EST.  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 new process for reviewing insurance rates.      

  • Feds Make It Easier For States To Enroll Poor Under Health Law:  The Obama administration informed state officials that they could simplify Medicaid to handle the barrage of potentially millions of new enrollees next year when the healthcare law expands coverage. Medicaid Director Cindy Mann wrote a letter to state officials 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.

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.