Thursday, March 28, 2013

FDA APPROVES NEW ORAL THERAPY FOR RELAPSING MS

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.

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.

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  http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=7539

Monday, March 18, 2013

MS ACTIVISTS MAKE CONNECTIONS DESPITE SNOW STORM

Stewart Ferry, Rep. Gloria Negrete McLeod (CA-35), Mary Ann Braubach
March 4-6, the 22nd 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
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.



Jimmy Fahrenholtz, Roi-Lynne Hulin, Rep. John Fleming, M.D. (LA-5), Erin Hulin, Crystal Smith





A snow storm, which earned the formidable nickname “Snowquester” hit the D.C. region towards the end of the conference and unfortunately, significantly impacted the visits MS
activists were planning to make on Capitol Hill. Despite this, MS 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!
Rep. John Shimkus (IL-15), Amy Thomas, Steve Izard, Rep. Rodney Davis (IL-13)


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. Thanks to all those who traveled to Washington and persevered in the eye of the storm!

Wednesday, March 13, 2013

MS AWARENESS WEEK IS MARCH 11-17th!!




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. 

Representatives Barbara Lee (CA-13), Michael Burgess, M.D. (TX-26) and Chris Van Hollen (MD-8) introduced the Multiple Sclerosis Awareness Week Resolution (H.Res. 95) and Senators Bob Casey (PA), Susan Collins (ME), Mary Landrieu (LA) and Sherrod Brown (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 these legislators for their continued support!

Here are some easy ways to boost your involvement with MS Awareness Week:

-Connect with your chapter to find out about local happenings recognizing MS Awareness Week

-Connect with the Society on social media and ask your friends to connect with us too! Every connection counts so share why you connect.

-Use the MS Activist Toolkit to spread the word and educate public officials about MS

-Stay informed by signing up to receive the Society’s email communications

-Download badges, email signature images, wallpapers and more to increase MS awareness

-Donate to help us move closer toward a world free of MS

Monday, March 11, 2013

FEDERAL FRIDAYS

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.


2013 Public Policy Conference.  Earlier this week the 22nd 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 Byron Dorgan 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.  JP Paluskiewicz, 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 Celinda Lake 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.

PPC Hill Day.  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 Tim Coetzee, Reingold Inc. social media/communications/research expert Joe LaMountain, 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.

MS Awareness Week Resolution introduced.  Representatives Barbara Lee (D-CA), Michael Burgess (R-TX) and Chris Van Hollen (D-MD) introduced the Multiple Sclerosis Awareness Week Resolution (H.Res. 95) and Senators Bob Casey (D-PA), Susan Collins (R-ME), Mary Landrieu (D-LA) and Sherrod Brown (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!








Sequestration in effect.  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 he may have overplayed it 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.



How are Lawmakers affected by Sequestration?  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 members’ pay will be escrowed 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?



Federal Budget & Deficit Deal maneuverings.  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 dined with key Republican senators Wednesday and had lunch with Budget Committee Chairman Congressman Paul Ryan and ranking member Chris Van Hollen on Thursday.  Speaker Boehner expressed positive feelings about the outreach.  Senator Mike Johanns stated that ‘His goal is ours. We want to stop careening from crisis to crisis.’  Ryan and Senate Budget Chair Patty Murray are the key lawmakers to make a deal happen.

Old Fashioned Filibuster!  There is a lot of complaining about the Senate filibuster in large part because Senators stop business simply by threatening one.  Senator Rand Paul (and likely 2016 presidential candidate) this week decided to do it the old-fashioned (and intended) way – 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 made their views known afterward.

Obamacare notes?  The Federal Reserve Beige Book reports that in some areas of the country, the Affordable Care Act is being cited as the reason for some layoffs.  And freshman Senator Ted Cruz is renewing the now-pretty-dormant push to de-fund the health law.

The Cuban Missile Crisis ‘myth.  Yes, this is random, but it caught my eye.  A new book 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.

St. Patrick’s Day.   The National Retail Federation estimated that Americans spent around $4.6 billion 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.  That means that on one day, Americans spend enough to fund the combined Society/Federal government MS research efforts for over 26 years . . . that’s a bit sobering, huh!


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Have a great week!

Monday, February 25, 2013

FEDERAL FRIDAYS



Hi all – I could have called this the ‘Countdown to Sequester’ edition but thought better of it.  Who knows, maybe they will kick the sequester can down the road another month or two!



President’s Day – Fun Facts.  Monday we observed the holiday and this week I ran across this U.S. Census tidbit 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 Vice President George Clinton 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 “The Smithsonian Book of Presidential Trivia” released last month.

State of the Union ‘Dumb Down’  The Guardian 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 11th highest out of the 41 addresses.

Mapping the Human Brain.  President Obama announced plans 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.

Sequestration on (everyone’s) mind.  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 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 doesn’t fear any blowback on the cuts.  In the meantime the president is ramping up pressure for a ‘sequester fix.’  This week he said sequester would be like taking a ‘meat cleaver’ to the budget.  NIH Director Collins is mincing no words, stating that these are just ‘dumb’ cuts

Obama Outreach.  The most recent development is that President Obama made calls to Speaker Boehner and Minority Leader McConnell to discuss sequestration and what can be done to avoid it.  The White House published its view of the impact of sequestration on its website.

Research Funding Threat.  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.

Retirements.  Our 2011 Senator of the Year, Mike Johanns of Nebraska, announced 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.

HUD-HHS Rental Assistance Partnership for Persons with DisabilitiesFebruary 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.  Learn more here.

Not a Cure for Death, but . . .   New research shows 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.!

Public Policy Conference.  The National MS Society Public Policy Conference is right around the corner and we’re pleased that former Senator Byron Dorgan, former founding co-chair of the MS Caucus, will join us to kick it off!  Also, nationally renowned pollster Celinda Lake will be our lunch speaker on March 5.  Looking forward to seeing 300+ Activists, and the wave of orange on the Hill March 6!

Health Reform Implementation News:


  •  HHS Issues Final Rule on the Essential Health Benefits:   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 here.   
 
  • Confused about Medicaid and its role in implementing the Affordable Care Act? You’re not alone!! So, the Centers for Medicare and Medicaid published this new list of Frequently Asked Questions
 
  • State Pre-Existing Condition Insurance Pools No Longer Accepting New Enrollees:   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 phase out 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. 
   
  • Florida in? Governor Rick Scott of Florida is the most recent governor to announce support for expanding Medicaid 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.


 By the next issue of Federal Fridays, we’ll know whether Congress and the Administration averted yet another potential
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!