Monday, April 16, 2012

FEDERAL FRIDAYS


Now back to our regular Federal Fridays - as you can imagine there have been huge swings of speculation about what the Supreme Court will do after the three days of oral arguments a couple of weeks ago.  A few interesting items are noted below.  Please share Federal Fridays with friends and colleagues and anyone wanting to be added to the email list should email msactivist@gmail.com.  And be sure to follow us on twitter @MSActivist.  And if you’re interested in learning more about effective social media strategies, check out this article.



Health Reform & the Supremes.  Well there were three days of very interesting oral arguments and Q & A on the health reform law with several possible scenarios emerging including one that would once again result in discrimination against women.  ‘What’s next’ is a common refrain however there are so many possible implications of any Court ruling that it’s hard to predict.  If you want to partake in the guessing, feel free to read the oral arguments posted on the Court website.  The insurance mandate is central however there are many other health-related mandates in federal law already.

‘Judicial Activism’.  When a court or judge essentially ‘makes’ law rather than advising that a legislative body take action it’s known as judicial activism.  Reagan administration attorneys are concerned that the Roberts Court may be entering a period of activism which causes them and others concern.  Should the Court have a negative ruling on the ability of Congress to use the powers of the purse (a.k.a. coercion) to compel states to take an action (Medicaid expansion), that would have a truly profound impact.  Several states are vocally supporting the expansion.

SCOTUS Can’t Stop Health Care revolution.  Very interesting piece in the Washington Post focused on health system changes occurring with our without the health law, with a particular focus on the Cleveland Clinic.

ACA State Milestones.  The Robert Wood Johnson foundation has published a document of milestones for 2012 under the Affordable Care Act.  You can see it here.  Most states are taking action to implement reforms already and the Commonwealth Fund has an interactive map of the U.S. so you can see how your state is doing.

Prescription Drug Benefit/Essential Health Benefits.  The National MS Society joined 100 other organizations in a letter to HHS Secretary Sebelius with concerns about the prescription drug coverage standard outlined in the HHS bulletin issued in December 2011.

Pro-Bono Dental Care.  The National MS Society has endorsed legislation that leverages pro bono dental care for those who cannot afford it, including many with MS.  Without proper care, more serious illness can develop and infections can occur that exacerbate diseases.  HR 4091 and S 1878 - Coordination of Pro Bono Medically Recommended Dental Care Act was introduced by Rep. DeGette and Sen. Menendez.

High Cost of Drugs.  The New York Times has an article about the high cost of prescription drugs and what some are trying to do about it.  It references legislation by Rep. David McKinley (WV) to eliminate the fourth specialty tier.  Our office has met with McKinley’s staff offering support and assistance, but also advising that as drafted, the legislation wouldn’t necessarily address the cost issue since insurers could simply wrap fourth tier medications into the third tier and adopt a co-insurance in that tier.  The National MS Society advocacy staff and volunteers work aggressively on this issue and have had varying degrees of success across the country limiting out-of-pocket costs via insurance coverage.  

Biosimilars – will they bring drug costs down?  We actively supported the biosimilars provision of the Affordable Care Act yet this article explains why bringing them to market won’t necessarily have the dramatic impact on cost that generic drugs had.  The article indicates that savings would likely be in the 20% range and while that may not seem like a lot, 20% of a big number multiplied by the number of people using the medication = a really big number!

Sequestration & the NIH.  There was a report released recently highlighting what will happen at the National Institutes of Health should Congress allow the budget sequestration take effect on January 1, 2013.

Employer Approach to providing Health Insurance.  Some employers are taking a much greater ‘hands on’ approach with employees, requiring medical tests in advance of providing coverage, requiring smoking cessation, nutritional changes, etc.  Read more.

‘Death & Taxes’.  Ben Franklin’s quote about the only certain things in life are death and taxes is apparently more true than even he knew.  Check out this story, and be careful this weekend!

Congressional MS Caucus grows!  We now have 30% of the U.S. Senate and 34% of the U.S. House of Representatives as Members of the MS Caucus – thanks to everyone who has helped to get their elected officials to join!

Vets & MS.  Veterans living with MS tend to have higher prevalence of chronic illness according to this article.

Couple met in Hospital, both with MS.  As part of NPR’s Storycorps featured a couple—both of whom have MS—who met each other while receiving treatment and have now married. It’s a great story - I encourage you to take a few minutes and read/listen.

Bunnies and Research.  Don’t worry, I’m not going to get into a conversation about use of animals for medical research!  Just thought you’d be interested to know that Americans will have spent approximately $16,800,000,000 ($16.8 billion) on Easter this year.  That amount would fund MS research at the NIH ($122 million/year), DOD ($3.8 million for CDMRP) and the National MS Society ($40 million/year) for 101.8 years.  I’ll be a young 150 year old by about then!

2012 MS Awareness Week a Success

Every year, the Society leads efforts at the national and state and local levels to promote MS Awareness Week. This is an extraordinary week during which people affected by MS from all over the nation come together to share, educate, and build awareness about what multiple sclerosis means to them and this year was no different. This year’s message was “MS Kills Connection >   < Connection Kills MS” – a provocative message that reflects the stark reality of the disease and, more importantly, how the challenges of MS can be overcome by strengthening and growing our connections. Information and images about MS were broadcast repeatedly in Times Square, buildings were cast in orange light, Governors signed resolutions to recognize MS Awareness Week, and people proudly wore orange to raise awareness in their communities. Click here to watch an awesome video including just a sampling of the MS Awareness Week activities taking place around the country.

Capitol Hill again led the charge to make sure members of Congress express their commitment to people with MS. Representative Barbara Lee (CA-9) introduced the MS Awareness Week resolution (H. Res. 560) in the U.S. House of Representatives which 36 members cosponsored. Senator Bob Casey (PA) introduced the Senate resolution (S. Res. 396) that had 6 co-sponsors and passed the Senate on March 14th. We want to send a big THANK YOU to MS activists around the country who helped make great state and local awareness week events happen. MS awareness week comes just once a year, but it is critical that we make our voices heard throughout the year!

Niagara Falls Glows Orange for MS Awareness Week

Times Square Billboards Raise Awareness About MS!


Wednesday, April 11, 2012

Support for Funding for the MS Community as the Federal Budget Process Starts

Over the past month, the Society has worked with champions on Capitol Hill to gather support for our 2012 priorities—funding for the National Institutes of Health (NIH), funding for the Lifespan Respite Care Program that supports family caregivers, and funding for MS research in the CDMRP. MS activists sent over 7,000 emails to Capitol Hill and visited over 370 offices on the Society’s annual Hill Day. This fantastic advocacy helped garner support from 155 members of the House of Representatives and 47 members of the Senate for a recommendation of at least $32 billion for the NIH in Fiscal Year 2013. In addition, 33 Representatives and 7 Senators agreed to support $5 million for the Lifespan Respite Care Program. And while the Senate CDMRP Dear Colleague is still circulating, 68 Representatives have already indicated their support for $10 million for MS research in the CDMRP. The Society thanks Sens. Casey and Burr and Reps. Bilbray, Markey, Langevin, Burgess and Carnahan for leading these efforts.

Congressional hearings on the budget have been and will continue to occur and some committees will soon start “marking up” appropriations bills. The House passed a budget resolution but it is not expected to advance in the Senate. In the past few years, Congress has not completed budget work by the intended deadline of October 1. Also, because it is an election year, odds of hitting that target are not high. The Society will continue to weigh in as the federal budget process continues to ensure that the voice of the MS community is heard.

Tuesday, April 10, 2012

Congressional MS Caucus Grows!


In direct response to MS Activists requests during our recent Public Policy Conference, twenty members of the House of Representatives and four members of the Senate joined the Congressional MS Caucus, bring total membership to 150 U.S. Representatives and 30 U.S. Senators. To see if your members are on the MS Caucus, go to this webpage. Many thanks to everyone who helped recruit these elected officials!

Monday, April 9, 2012

Ask Your Senators to Support MS Research Funding


Amazing progress has been made over the last twenty years toward better understanding MS and in developing effective MS therapies. Over the past few years, $20 million has been allocated to MS research through the Congressionally Directed Medical Research Programs (CDMRP). Congress first allocated a distinct funding stream for MS research in the CDMRP in Fiscal Year 2009 in response to MS activists’ impressive advocacy. Please take a few minutes today to email your Senators to help ensure the continuation of this vital research funding.

The CDMRP funds high-risk, high-reward research that complements the important basic research conducted by the National Institutes of Health (NIH). The CDMRP is also peer reviewed—which means that people active in the MS research community gauge the merits of research applications and help to determine which projects get funded. Peer reviewers for the MS-related applications include people living with MS.

To promote continued research innovation and momentum, Senators Sheldon Whitehouse (RI) and Mike Johanns (NE) have circulated a “Dear Colleague” letter on Capitol Hill. This letter will be sent to the Senate Appropriations Committee that decides how much funding this particular program receives so the more support, the better. Click here to email your Senators and ask them to indicate their support for MS research funding by signing this Dear Colleague letter.