Tuesday, April 2, 2013


The end of March is here, Congress finalized FY 2013 spending plans, and Members of Congress are back in their states/districts for Easter break.  We are now focused on funding for core issues including NIH & CDMRP, FDA, and Lifespan Respite.  In this issue there is news around biosimilar development, the charitable deduction, Bob Dole’s take on the disability treaty fight, a bill introduced to deal with the doctor shortage and other issues.  At the end we have another Health Reform Implementation section. 

BG-12 ApprovedThe U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS, and the tenth disease-modifying treatment available in the U.S. Tecfidera is expected to be available by prescription within a few days.

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FY 2013 is finally done.  The House and Senate passed another 6 month temporary spending bill, known as a CR (continuing resolution) that extends federal government funding through the end of the fiscal year.  It was signed by the president so FY 2013 battles are done.  Sequestration is still in effect however some agencies will see very modest increases in spending.  Outlined below are 4 programs of great interest to the Society:

· National Institutes of Health: A $71 million increase over FY2012 funding level

· Food and Drug Administration: A $9 million dollar increase over FY2012

· Congressionally Directed Medical Research Programs (CDMRP): The exact funding for the MS CDMRP is still unknown but is expected to be similar to FY2012 ($3.8 million)

· Lifespan Respite: We are awaiting final confirmation

Federal Budget Passed.  For the first time in four years the U.S. Senate passed a budget.  The House passed one too.  They did so in part to meet an April 15 deadline created by another bill that became law that said that whatever chamber fails to pass a budget will go without a paycheck until the end of the Congress (January 2015).  So the good news is that a budget passed.  The real news is that it doesn’t matter – the two Houses are unlikely to reconcile the bills and re-pass the budget since they are pretty irreconcilable, and it doesn’t matter because these are non-binding resolutions.  The effect of a budget that is passed and sent to the President is primarily to provide a framework or blueprint from which to work.  Meanwhile, the White House announced yesterday that it will release its budget on April 10.

Charitable Deduction Update.  There was some gamesmanship in the Senate last week with an amendment that would direct Congress to NOT alter the charitable deduction but it was incorporated into an amendment that would reduce the revenue raising provision of the resolution from $975 billion down to $483 billion, putting those Senators who support the charitable deduction in a bit of a bind.  It didn’t pass, and even if it did, budget resolutions are non-binding so the Senate could ignore the provision in a tax reform or appropriations cycle.  So for the time being, the charitable deduction remains.

Sequestration Impact.  Federal workforce furloughs are about to being and this Washington Post article highlights how uneven it will be.  Many agencies are furloughing employees one day a week for a set number of weeks, but the entire Department of Housing and Urban Development has chosen to simply shut down for 7 days due to the paperwork required to stagger its 9,000 employees.  And in addition to White House tours being cancelled, now the Blue Angels of the Navy have been grounded until further notice.

Up Next:  FY 2014!  Dear Colleagues are circulating in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program (CDMRP), $32 billion for the National Institutes of Health (NIH), and $2.5 million for Lifespan Respite.  The Society has notified members of the Congressional MS Caucus in the House and Senate and are working in coalition with other groups to advocate for these funding levels for FY 2014, and further communications have been sent to Society advocacy staff and activists asking them to contact their elected officials urging them to sign onto these letters and support the funding requests.  If you’ve received the alert, please take action

Doctor Shortage.  New York Representatives Michael Grimm and Joe Crowley along with NY Senator Chuck Schumer, Senate Majority Leader Harry Reid and Senator Bill Nelson of Florida introduced companion legislation to try and partially address the physician shortage problem in the U.S.  Their legislation, the Resident Physician Shortage Reduction Act of 2013, would increase the number of Medicare-supported hospital residency positions by 15,000, or 3,000 per year over five years. In touting the companion bills, lawmakers said current Medicare rules keep an outdated cap from 1997 on the number of resident doctors a hospital may train through government-backed graduate medical education (GME) funding.  The Society is seeking clarification as to whether this bill applies to specialties like neurology.

Disability Treaty – Bob Dole’s view.  Former GOP presidential nominee and Senate Majority Leader Bob Dole gave an in depth interview to the Boston Globe discussing his take on what has happened within the Republican Party culminating in the vote to not ratify the Convention on the Rights of Persons with Disabilities.  He highlighted that in his day, there was ‘The Pact’, that on disability issues, there wouldn’t be partisanship and political gamesmanship.  Clearly that is no longer the case.

America spends big bucks on Health Care.  In a new blog post and infographic, Commonwealth Fund senior research associate David Squires, M.A., estimates how much money the U.S. would have saved if we had spent only as much per person on health as Switzerland, the country with the second-most-expensive health system. He also considers what that money could buy if we had it today.

Savings with Biosimilars?  Biosimilars are not generics, and won’t see the level of savings seen with the introduction of generic pharmaceuticals.  Some people question whether there will be significant savings at all.

State Regulation of Biosimilars.  The Los Angeles Times had a recent editorial saying that states should keep hands-off biosimilars.

Drug/Device Approvals to Slow.  According to the FDA commissioner, the across the board spending cuts will have an impact on the speed with which the agency is able to provide approvals.

Health Reform Implementation News:

  •   Happy Birthday ACA!  March 23rd marked the third anniversary of the Affordable Care Act’s enactment.  Give yourself and pat on the back for whatever you’ve done to help, then view or share this  video of a reporters’ roundtable discussion about the status, and challenges of implementation.  It’s about 27 minutes long, but great for those who are prefer the  easy listening option at the end of a long day.   National Public Radio marked the ACA’s anniversary by highlighting the status of state implementation efforts in three very different states, as captured in short videos ( 1 – 2 mins) of reporters on the ground in  Florida, Minnesota and Colorado.   

  • Do Americans Understand the ACA?  According to a recent poll, there is still a lot of confusion over the health reform law.

  • What’s a Reg-u-la-palooza?   It’s a made-up word for the frenzy of activity going on at the federal agencies as they issue final regulations, official guidance documents and other really important stuff to implement the Affordable Care Act. In the last few weeks, five major regulations have been finalized, including one on the Essential Health Benefits and Cost-sharing Requirements. Read through this summary from our friends at the Georgetown Center for Health Insurance Reform.  If you really want to get wonky, sign up for their Blog Posts through the link toward the bottom of this page.

  • Could limits on the Essential Health Benefits discriminate? Some disability rights advocates think federal regulations regarding the Essential Health Benefits that new health plans must cover in 2014 and beyond will allow insurers to limit and exclude benefits  important to people with chronic illness and disability so much that they could be discriminatory.  In this Health Affairs blog post, Sara Rosenbaum and  Joel Teitelbaum look for reasons why people with MS and others should feel well protected by the new regulatory standards, and find little to be happy about.                                                                                                                                                                                                                                                                                                    

  • Life after 2014? Kaiser Family Foundation President and CEO Drew Altman responds to reporters’ questions, and even manages to take the longer view, in his latest ‘Pulling It Together’.

  • Speculation on Premiums: Up, Down, Somewhere in Between? There’s plenty of uncertainty about what impact the Affordable Care Act’s insurance reforms will have on health insurance premiums. A new analysis by the Society of Actuaries suggests some will see big increases, but others don’t agree. Secretary Sebelius concedes  that some individual policy holders are more likely to experience an increase in their premium, but others will pay less.  A recent report by The Urban Institute claims that fears of “rate shock” that some claim young adults will experience are exaggerated.  This Fact Sheet from Kaiser Family Foundation explains how and why premiums will change for individual (“non-group”) insurance policies.

  • Physicians’ Survey on the Affordable Care Act and the Future of Medical Care.  Consulting firm Deloitte periodically surveys US physicians for their take  on changes in, and challenges to the health care system.  Check out the highlight of their 2013 survey, or download the whole (15 p) report.  

  • Making It Look Easy Ever wonder how busy activists keep up with all the new ACA rules?  We have a few tricks, like reading every word written by certain gurus.  Here’s a string of blog posts (newest to oldest) by Washington & Lee Law Professor Tim Jost on ACA rules and policy decisions.   

  • Keeping Track of Medicaid Expansion Decisions – We’ve included it before, and we’ll include it again.  National Academy for State Health Policy’s tracking chart on states’ decisions and progress on Medicaid expansion is the tool to use.  It’s got data galore, history, Governor and Legislative branch activity, and links to key documents. Knock yourselves out!  

That’s it for now – as always, feedback is appreciated, including suggestions of other issues/subjects you would like to hear more about.  Have a good week!

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