Friday, June 8, 2012

FEDERAL FRIDAYS

Federal Budget.  Well it has nearly been a year since the ill-fated Budget Control Act was passed.  Ill-fated because of the failure of the “SuperCommittee” however, the ‘ax’ incorporated in that law (sequestration) will still fall on January 1, 2013 unless Congress and the president take action.  With Europe in a continued and ongoing tightrope with economic disaster, the world is paying even more attention to what the U.S. plans to do with its own fiscal mess.  Fortunately a bi-partisan group of Senators are now meeting privately to hammer out the outlines of a plan that could be introduced after the November elections, a plan that the lame-duck session of Congress could enact.

Research Funding Decisions.  On June 12 the Senate subcommittee will mark up the bill that will fund NIH, NSF, CDC and other research entities.  The Society continues to push for an increase in NIH funding to $32 billion.  Here’s what Research America is saying about it all.  And watch for an Action Alert from us!

CRPD:  Next Steps.  The Convention on the Rights of Persons with Disabilities (CRPD) has now officially been sent to the U.S. Senate so our focus, along with a coalition of other organizations, is to urge Senate Foreign Relations Committee Chairman John Kerry to call a hearing in June on the CRPD so that the Senate could take it up before the August recess.  We are also communicating with Committee members, urging their support for the treaty.

SCOTUS Tick tock.  Now that we’re into the month of June all eyes are once again turning toward that third branch of government, the judiciary.  Why you ask?  Well, it’s the expectation that sometime this month the Supreme Court of the United States will issue its opinion on the Affordable Care Act.  How the court rules could be a yawner (unlikely), a ‘I didn’t think they’d do that’ decision, or a ‘gee, they just fundamentally altered long-time Federal-State relations’.  The New Yorker gives you more depth than that but rest assured we’re preparing to have a response to however the court rules and that response will center on how it impacts people with MS.
What if health law thrown out?  While the GOP has made getting rid of the health reform law it’s number one priority, now that we’re nearing a decision by the Supreme Court they are beginning to publicly acknowledge the peril that comes with success.  After all, about 2.5 million young adults now have coverage under their parents plan and of course seniors have seen the donut  hole get smaller so potentially alienating two significant segments of the electorate of course comes with peril.  No one is sure what will be next, or if the GOP will push a new bill that reinstates popular features but we’ll know soon enough.  The American Medical Association’s incoming president is predicting that there won’t be huge chaos in doctor’s offices if the law is thrown out (note – he and AMA support the law).

Politics of Supreme Court decision.  Politico has a good story outlining ‘the ugly, the bad, and the good’ of what could happen with the decision and the impact on Obama & Co.

UFA update.  Well the Senate has now passed the prescription drug and medical device use fee laws and yesterday the House voted to repeal the medical device tax that was included in health reform.  Vermont Senator Bernie Sanders had this to say about the user fee bill:

Sen. Sanders:  "The most pressing prescription drug issue in our country today is that Americans pay, by far, the highest prices in the world for their medicine ... I voted against this bill because it does far too little to address this crisis while it perpetuates a prescription drug system that continues to fail the American people."

Romney Medicare Plan.  The New York Times had a piece highlighting Governor Romney’s plan to re-shape Medicare if elected.  It includes ending the ‘open-ended’ commitment. 


Effective Advocacy.  MS Activist Tammy Pilisuk recently had a blog she wrote posted on the Surround Health blog where she gets into what makes for effective advocacy – what will move the needle in the minds of elected officials.  Nice job Tammy!

Rural & Underserved.  One key element of the National MS Society’s 2011-2015 “Strategic Response” is a focus on rural and underserved populations.  Integral to addressing this is, among other things, telemedicine.  As we’ve gotten more deeply involved in this, from a policy perspective there are essentially three major barriers to greatly expanding telemedicine:  licensure, reimbursements, cost to establish a telemedicine practice.  We’ve have taken a first step to address the licensure issue.  Senator Tom Udall is introducing a bill to create an optional national medical license so that a doctor would only need to be licensed in one state, then get the national license, and then s/he would be able to practice anywhere in the U.S., including via telemedicine. 

New Normal – High Deductibles.  Kaiser Health and the Washington Post did a little work and learned that high deductible health plans are becoming the norm, which may not come as a huge surprise.  The also did a feature on the high cost of specialty drugs including MS drugs.

The IRS & your Health.  In addition to the Treasury Department's long-standing role in preventive health services and pre-tax arrangements,  to implement the provisions of the Affordable Care Act regarding preventive care (Note -- its preventive, not preventative), the three federal agencies with jurisdiction issued a joint recommendation outlining exactly which preventive services qualified for coverage with no co-pay or co-insurance.  It is described on Healthcare.gov -- the official website for the Affordable Care Act.

Political Map of US.  Our friend Larry Sabato and his team at UVa have developed a very interesting visual of our politics in the form of a map.  Take a look yourself here.

Non-profit Advocacy – important as ever!  So says Dan Smith who recently left his position with the Senate Health, Education, Labor & Pensions (HELP) Committee.  He was interviewed for the Chronicle of Philanthropy – read it here.

Thursday, June 7, 2012

7 BIPARTISAN SENATORS ANNOUNCE SUPPORT FOR INTERNATIONAL DISABILITY CONVENTION


In May, the Obama administration transmitted the Convention on the Rights of Persons with Disabilities (CRPD) to Congress for its advice and consent for ratification. The CRPD is a United Nations convention that was negotiated in 2006. Today, the Convention has been signed by 153 and ratified by 118 countries. 

Although the treaty was signed by President Obama in 2009, ratification of the treaty shows the serious commitment of the U.S. to disability rights. Ratification also allows the U.S. to participate in an International Committee established to help other countries implement the treaty. 

Like the Americans with Disabilities Act (ADA), the CRPD emphasizes non-discrimination and equal access for all people across all areas of life. The CRPD brings the fundamental values of equality, human dignity, and participation of the ADA to an international scale. Through the CRPD, Americans with disabilities—including Veterans—will have equal rights when working, traveling, and studying abroad. 

On May 25th, a group of 7 bipartisan Senators publically announced their support for CRPD ratification. The Senators were  John McCain (R-AZ), Dick Durbin (D-IL), Jerry Moran (R-KS), Tom Harkin (D-IA), John Barrasso (R-WY), Chris Coons (D-DE), and Tom Udall (D-NM).   

By ratifying the Convention, the U.S. will show support for these international policies, but also set an example for other countries to follow suit. Since the CRPD has been transmitted by the Obama Administration to the Senate, the next step towards ratification is for the Convention to pass through the Senate Foreign Relations committee with a simple majority vote. 

Thank you Senators McCain, Durbin, Moran, Harkin, Barrasso, Coons, and Udall for announcing your support for treaty ratification and helping the U.S. remain a leader on disability rights legislation! The Society looks forward to continuing to work with Congress and partners like the U.S. International Council on Disabilities to ensure that this important treaty is ratified.

Thursday, May 31, 2012

ADVOCACY SHOULD BE PERSONAL: RECAP OF A POST BY MS ACTIVIST TAMMY PILISUK

Tammy Pilisuk is an MS activist from California who has been involved with the National MS Society for more than 20 years, as well as a health educator for more than ten. She is also a member of the Society’s Federal Activism Council, which annually reviews unmet needs in the MS community and helps determine policy priorities. Recently, she shared her advocacy insights in a post on the SurroundHealth Blog. You can read her post here.

Tammy points out that the basics of health advocacy are to know your issue(s), stay focused on key points, have a few facts, know what committees the policy maker sits on, tie it to a constituent concern, and leave a written leave-behind piece. But besides the key structural elements of health advocacy mentioned above, Tammy reminds us that advocates can’t forget why the issue is important and the difference it will make to real people. For Tammy, MS advocacy is personal—her mother has MS. In addition to being a health policy expert, Tammy finds herself in the role of affected family caregiver.

Throughout her post, Tammy talks about her own experiences with advocacy. As Tammy says, “I remind others that while policymakers can pick apart your budgetary requests, they can never argue with your story. This is where you bring the head and heart together.” Tammy often uses her mom to help her make her point while advocating, but she also uses her own life experiences. Advocacy is, and should be, personal.

In her post, Tammy takes time to teach all of us something about advocacy. Thank you, Tammy, for sharing your story!


Wednesday, May 30, 2012

TODAY IS WORLD MS DAY!

Today is World MS Day. Our global connections make us a powerful MS movement - we are 1000 Faces of MS. Share your story at www.MSconnection.org or globally at www.worldMSday.org and share this video with your network to raise awareness.

Tuesday, May 29, 2012

WORLD MS DAY IS TOMORROW!

Tomorrow, World MS Day, more than 75 countries will join together to share the 1000 Faces of MS and raise global awareness. What do you plan to do?