Friday, May 11, 2012


Breaking News: CRPD.  As many of you are aware, we have been engaged with many other organizations in working to secure leaders in the Senate to champion ratification of the Convention on the Rights of Persons with Disabilities (CRPD).  More recently we engaged Chapters and MS Coalition members to urge President Obama to transmit the CRPD to the Senate so it can begin the ratification process – yesterday we received notice from the White House that it is ‘expeditiously’  transmitting the CRPD to the Senate for ratification.  We will continue to engage and will work with our Activists to build support for this treaty in the Senate.  Thanks to everyone who had a chance to send a message to the Obama Administration on this!

‘Old Drugs, New Tricks’.  That’s how a recently announce initiative between the NIH’s new translational science institute is characterizing a bold initiative being undertaken with Pharmaceutical companies to determine whether existing older therapies can have new applications.  An initial $20 million has been allocated to this effort.

The UFAs.  One source of funding for the Food and Drug Administration (FDA) are user fees on drugs and devices.  Congress is currently working on passage of the Prescription Drug User Fee Act (PDUFA) and the Medical Device User Fee Act (MDUFA) among other FDA related legislation.  The National MS Society has taken an active role in support of these efforts – it’s critical that these laws be re-authorized so that the FDA has the funding necessary to ensure the safety and efficacy of drugs and medical devices.

Sequestration.  On January 1, 2013 sequestration will take place in order to cut federal spending.  This was part of last summer’s Budget Control Act that created a Super Committee to devise spending reductions.  Should the Committee and Congress not act on those spending reductions (which they didn’t), then a ‘trigger’ would kick in on January 1, 2013 (which is currently the plan) to make automatic cuts.  These cuts will be felt – they won’t be fluffy little symbolic cuts.  One area that will take a hit is medical research – Research America has issued a report called Sequestration:  Health Research at the Breaking Point that details the impact sequestration could have on medical research. 

Medicare Fraud Bust.  107 individuals have been arrested in the largest Medicare fraud case ever.  The alleged fraud amounts to $450 million.  And now the Feds are looking into possible over-payments totaling $5.6 Billion to 2600 drug stores for prescriptions.  Expect greater enforcement by the Feds as they crack down on fraud and abuse within the Medicare system. 

Can we handle the truth?  Americans spend, on average, double what other people spend around the world on their health care.  We spend between one-third and two-thirds more than 12 other advanced nations.  So since we’re spending as though we’re paying for Cadillac coverage, that must mean that we’re seeing Cadillac results right?  Of course you know the answer, and it’s a big ‘no.’  For more on the truth, click here

Veterans and Transportation.  U.S. Secretary of Transportation Ray LaHood is engaging the veteran community in a national online dialogue regarding transportation issues impacting U.S. military veterans.  To register and provide input go to

IBM Analytics & MS.  IBM announced that researchers from The State University of New York (SUNY) at Buffalo are using IBM analytics technology to study more than 2,000 genetic and environmental factors that may contribute to multiple sclerosis (MS) symptoms.

Where do we need Docs?  Most people involved in the health care realm realize that there is a shortage of doctors in America, a shortage likely to be exacerbated when 30+ million previously uninsured Americans obtain insurance as part of the Affordable Care Act.  The Washington Post has created a map showing where we need the doctors.

Should the DOJ enforce laws?  Yes, silly question.  Of course the Department of Justice should be enforcing our laws, including the Americans with Disabilities Act.  Well some in Congress are pushing legislation and amendments that would specifically prohibit the Justice Department from enforcing a law regarding access to pools.  It really is quite unbelievable and the President announced that he’ll veto the appropriations bill if such an amendment is added.

Cost of Drugs.  This is no surprise to people with MS who are currently taking a therapy but Kaiser Health News had a piece focused on the fact that patients are bearing more and more of the cost of specialty drugs.  This is an issue of great concern to the National MS Society and we continue to explore various options to help address the issue.  Kaiser’s story featured comments from our Vice President of State & Local Government Relations, Bari Talente.

Spying on Russia.  Well, this story isn’t really about that, but it’s about the technology once employed in spying on Russia.  It’s now being used to help patients and their caregivers.  (I never thought I’d be able to sneak in a photo of a spy plane into Federal Fridays!)

America in 2030.  A recent report made startling predictions about Americans and our weight and predicted that by 2030, fully 42% of Americans will be obese unless we change course now.

Seeing a Doctor.  Kaiser Health reports that in the past decade the difficulty in accessing health care has become significantly worse for tens of millions of Americans under age 65, including those who have health insurance.

That’s it for now – have a terrific weekend!

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