Monday, May 6, 2013


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. 

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!

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 PetitionAdvance CLASS has launched a petition on 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.

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.  

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

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