REPRESENTATIVE FROM PENNSYLVANIA RAISES AWARENESS ABOUT MS AND WALK MS ON THE HOUSE FLOOR

PA Rep. Bizzarro, Team Captain Lori Straub and Rep. Thompson cut the ribbon at Walk MS   

              
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 team. 

In the speech (which can be seen here), 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.

John Platt and Representative G.T. Thompson in discussion

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!

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!

FEDERAL FRIDAYS

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!

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. 

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CDMRP Success!  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:  $5 million.  That’s an increase of $1.2 million over FY 2012 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!

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CDMRP embraces social media.  You can now follow CDMRP on twitter @CDMRP and it now also has a YouTube Channel.

FDA Launches Patient Site.  The Food and Drug Administration recently launched the new Patient Network 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.

R & D to take a $9.3 billion hit.  According to the American Association for the Advancement of Science, the government is set to decrease funding for research and development by a net $9.3 billion 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).

Sequester Victors.  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 others are lining up hoping for their own sequester ‘fix.’

Pricing Transparency.  A recent article highlights one area in health care that is drawing bi-partisan support:  pricing transparency.  The piece notes an Institute of Medicine study from 2012 suggesting that 30 cents of every $1 is wasted in health care.

 

Long-Term Care Petition.  Advance CLASS 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 here.

Airplane Access Petition.  There is another petition calling for airline accessibility for the approximately 1.5 million Americans who are wheelchair bound.  You can sign here and pass along to others.

Road Bumps for Obamacare?  Well it seems pretty fashionable lately for Ds and Rs to take cracks at the Affordable Care Act.  It’s certainly a complex law 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. Harry Reid has expressed concerns.  There was a recent spat over supposed efforts to exempt Members of Congress and staff and now an effort to require all federal employees to fall under the ACA. 

Health System Data Center.  The Commonwealth Fund recently redesigned its health system data center where you can interact with data from The Commonwealth Fund’s state, local, and child health system performance scorecards

Verify the news, maybe?  The Drudge Report got caught publishing a satirical story from the Daily Currant (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 highlights a few other new sources that have done the same.

New Study on Medicaid’s Effects on Recipients Gets Plenty of Attention. Everybody who’s anybody is writing, talking and/or blogging about what this study of Oregon Medicaid recipients means.  Let Time magazine sum it up for you, then you decide.

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Health Reform Implementation News:

•   Commonwealth Fund Study Highlights ‘The Price of Being Un-Insured’:  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!

•  Shorter is better! The President and Secretary Sebelius want you to get excited about their new, and much shorter, application form 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.         

• Some States Push Back Against ACA’s Higher Premium for Smokers:  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.  

• Kaiser Health News’ ‘Insuring Your Health’ Column features answers to questions submitted by readers to help clarify various aspects of healthcare reform.  Here’s a few on employer-sponsored insurance (ESI).   

• It Ain’t Over Yet: States continue their wrangling over whether to take all available federal dollars to expand their Medicaid programs. Check out the latest tracking poll.  

•  AARP’s Public Policy Institute survey finds 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 brief helps explain this major program of the Affordable Care Act, different approaches among the states, and some of their implications.  

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That’s it for now!  Have a great week!!

MS ACTIVISTS PRESENT REPRESENTATIVE MCMORRIS RODGERS WITH SOCIETY’S 2012 REPRESENTATIVE OF THE YEAR AWARD

Nicole Nida, Rep. McMorris Rodgers and Mike Burns in Spokane

MS activists Nicole Nida and Mike Burns recently awarded Representative Cathy McMorris Rodgers (WA-5) with the 2012 Representative of the Year Award 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.

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.

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.

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.

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.

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!

THOUSANDS RALLY TO SUPPORT FEDERALLY FUNDED MEDICAL RESEARCH

MS Activists at the Rally

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 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.

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.”

MS Caucus Co-Chair Rep. Van Hollen 

Thousands attended the Rally

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 MS Activist Twitter account “live-tweeted” the event to spread the word to all of our activists through the social media website.

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!

The National MS Society's name appeared on the big screen!

This Week’s Events.  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 Boston Marathon and the massive explosion and devastation in West, Texas. 

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Rally for Medical Research.  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

research.  Cokie Roberts was the emcee and among the speakers was Congressional MS Caucus Co-Chair Chris Van Hollen (D-MD).

Obama Budget.  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 article highlighting its impact on health care, and another talking about impact on the pharmaceutical industry.

Simpson-Bowles 2.0.  Former Sen. Alan Simpson and former Clinton chief of staff Erskine Bowles just released a revised version of their deficit reduction plan. 

Sequestration.  The across the board spending cuts are beginning to have an impact, with more to come.  Here is a summary of impact 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.

Fiscal Gap:  $211 Trillion.  This is a term I recently read in this article 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. 

Reconciliation after all?  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 supportive 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 Washington Post article.

Doc Shortage Confirmed.  The American Academy of Neurology conducted a study to measure how significant the neurologist shortage is and just published the results.  The US could use 11 percent more neurologists to meet current needs. By 2025, that number will grow to 19 percent.  Another article specifically address the impact on MS.

Providers want faster payment system change.  Payment for treatment as a whole, rather than by fee-for-service, is the goal, and many providers want to move more quickly to that model of care/payment. 

Electronic Medical Records.  The Obama Administration is making another push, hoping to help streamline the process.

Cost of Health Care in Your State.  The Wall Street Journal put out a piece with a state by state breakdown of what health care costs.

Human Genome Project at 10.  It has been 10 years since this ambitious project was completed.  Here’s a piece about what it accomplished, and what comes next.

20 Best Small Towns to Visit.  Smithsonian Magazine published a list of their top 20 picks of small towns to visit.  Just another reminder of the richness we have within our borders.

Other ‘livable’ planets ID’d.  NASA has apparently located two planets that appear to be able to sustain life – interesting read!

MS Coalition Partner a finalist!  Accelerated Cures Project for MS, a member of the MS Coalition, 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.

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Health Reform Implementation News:

•   “I don’t’ get it.” 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 opinion poll 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.   

•   Who Does What? Consumer Assistance Takes Many Forms: 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 Navigators and In-Person Assistance Programs 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 video of a panel discussion among a group of experts.

•   The Good News/Bad News on Out-of-Pocket Costs   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-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 sign-on letter that made headlines in health policy circles last week.

•   All Eyes on Arkansas:  Now that Arkansas’ legislators have opted for Medicaid Expansion through the “premium assistance” model, 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.)

•   Working Families to Benefit from Insurance Subsidies:  In a new Congressional Budget Office study including state-by-state breakdowns, working families will benefit the most from the Affordable Care Act’s premium subsidies. 

•   Employer-Based Coverage Trends:  Amid fear and speculation about employers dropping health insurance benefits for their workers, employers in MA and some other states buck the trend. John McDonuogh tells us all about it.   

   Have a great week!