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

MS ACTIVISTS MAKE CONNECTIONS DESPITE SNOW STORM

Stewart Ferry, Rep. Gloria Negrete McLeod (CA-35), Mary Ann Braubach

March 4-6, the 22^nd 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!

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

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.

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2013 Public Policy Conference.  Earlier this week the 22^nd 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!

Catch ‘em where you can!  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!

Elected Official Honorees.  Honorees presented with their awards at PPC included Governor Chris Christie of New Jersey as Governor of the Year, Senator Tom Harkin of Iowa as Senator of the Year (he is our only two time recipient), Representative Cathy McMorris Rodgers as Representative of the Year, and a new award for former Senator Olympia Snowe, recipient of a Congressional Lifetime achievement award.  Her former state director, Gail Kelly Sheehan 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.

Become a Digital MS Activist.  Learn how to engage in advocacy and activism the digital way!  Check out the ‘how to’ on the Society’s digital activism page.

Rally for Medical Research in DC.  The National MS Society is joining with dozens of other groups on April 8 in a rally for medical research funding.  Sign up for email alerts about the rally under ‘get involved.’

Research!America MS Fact Sheet available.  The National MS Society partnered with Research!America to create a fact sheet which is now available on their website.  Highlights why we need to continue the push for MS research!

Federally Funded Research to be made public.  The White House announced that research funded with federal dollars will now be made available to the public.

Bitter Pill.  TIME magazine has a very good, extensive article complete with real examples of  cost drivers in the American health care system that keep our costs, arguably, artificially high.

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.

Sequestration Humor.  Columnist Roger Simon takes a whack at sequestration with a little humor!

Sequestration defined.  /ˌsēkwiˈstrāSHən/ Noun:  ‘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.’

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?

White House tours nixed.  Sequestration has caused the White House to cancel its tours.  You can take a virtual tour here though!

Government Shutdown on March 27 (likely) averted.  Before leaving town on Wednesday, the House of Representatives passed a bill 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.

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!