Thursday, June 28, 2012


National MS Society’s Statement regarding the United States Supreme Court ruling on the Patient Protection & Affordable Care Act

The National Multiple Sclerosis Society supports the decision of the United States Supreme Court regarding the Patient Protection and Affordable Care Act.  This ruling will have a significant, positive impact on many, including the millions of Americans affected by multiple sclerosis. 
Below are some of the provisions of the law that the National MS Society believes will have the biggest impact on people with MS and their families:
  • Prohibition of coverage denials based on pre-existing conditions:  Too many people living with MS had been routinely denied insurance after receiving their diagnosis, preventing them from getting the care they need.
  • Prohibition of lifetime limits:  Routine, often costly care is needed to manage MS. This may cause those living with severe forms of the disease to reach their lifetime limit early in life. Elimination of that limit was critically important for continued care.
  • Elimination of annual limits:  Similar to “lifetime limits,” many patients reach their annual limit of coverage because of the cost of care for MS. These arbitrary limits should not prevent those in need from receiving care. 
  • Extension of parent’s insurance to 26:  Many people with MS are diagnosed in their 20s and may still be in school or lacking a full time job to help pay for their care. This provision ensures that they can continue coverage under their parent’s policy.
  • Closing the Medicare Part D Coverage Gap:  Disease Modifying Therapies for someone with MS can cost as much as $4,000 per month, which is out of reach for the average American; therefore, gradually closing the coverage gap has provided financial relief for those who depend on Medicare for prescription coverage.
  • Pathway for Biosimilars:  The law provides a pathway for biosimilars which provides some hope of lower cost therapies in the future.  The FDA had recently indicated it would not have pursued this pathway without the legislative mandate therefore, it will continue to be developed--which is good news for anyone who uses biologic therapies.


Although many people with MS have health care coverage, 70% of those with health insurance still struggle with the cost of health care and 30% are forced to spend less on food, heat, utilities and other necessities in order to afford their health care.  Those without access to private insurance and who do not qualify for public programs are often priced out of the market, as individual plans can be prohibitively expensive. 

On average, the financial impact of living with MS is $69,000 per year, and more than half of this amount consists of direct health care costs.  Unlike some other diseases, MS is a lifelong illness—typically diagnosed between the ages of 20 and 30s - prime career and family building years. Because of the high cost and complications that can be associated with the disease, the National MS Society has long supported many of the policies that were included in the law just upheld by the Supreme Court. 
With guidance of people living with MS, the Society adopted a set of National Health Care Reform Principles several years ago and, as an organization.  Our approach is to support legislation that is in line with those principles.  We intend to continue to work with Congress and the Administration in pursuit of public policies that address the needs of those impacted by MS. 


For assistance with specific health insurance questions, people with MS, their families or healthcare providers may speak with an MS Navigator by calling 1-800-344-4867 (FIGHT MS).  You can find additional information on our website at
Selected External Websites that may be of interest

SCOTUS blog – A Bloomberg Law-sponsored blog covering the Supreme Court.

FindLawU.S. Supreme Court Opinions – A service for legal professionals

Kaiser Health News – A special section dedicated to the Supreme Court ruling

Legal Information InstituteCornell University Law SchoolRecent Supreme Court


Oyez - U.S. Supreme Court MediaThe Court and Healthcare Reform

Politico – Health Care ReformNews, analysis and opinion about the Supreme Court decision and the health reform law

Health Care Policy and Marketplace ReviewA review of the latest developments in federal health policy and health care reform.

HealthLawProf Blog A more scholarly look at health issues, including the Supreme Court decision

Wednesday, June 27, 2012


Last week, June 22nd, was the 13th anniversary of the United States Supreme Court decision Olmstead v. L.C. Thirteen years ago in this historic case, the Supreme Court ruled that the unjustified institutional isolation of persons with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA) and that public entities, within certain stipulations, must provide community-based services to persons with disabilities when appropriate. This ruling affirmed the rights of individuals with disabilities to live in their communities and has become an important precedent for people with disabilities to maintain independence and be fully integrated in society.
This case started when two women living with mental disabilities challenged the state of Georgia—insisting that they were better served and healthier in the community as opposed to being housed in an institutional setting. It took a while to wind through the court system, but the Supreme Court ruling is a true victory and its anniversary is a reminder of what activism can achieve!

The impact of the Olmstead decision is still growing. In April, the U.S. Department of Health and Human Services (HHS) announced the creation of the Administration for Community Living (ACL). The ACL combines the Administration on Aging, the Office of Disability, and the Administration on Developmental Disabilities into one agency to support cross-cutting initiatives. The goal of the new agency is to increase access to community supports and achieve full community participation for people with disabilities of all ages and seniors. Kathy Greenlee—who spoke at the Society’s 2012 Public Policy Conference—is ACL’s Administrator. Learn more about the new Administration for Community Living by clicking here!

Victories such as Olmstead that change the lives of people on a daily basis would not be possible without the bold work of activists in the disability community! Thank you, Activists!

Monday, June 25, 2012


Decision Watch:  T-minus 3 days (maybe).  The conventional wisdom is that the United States Supreme Court (SCOTUS) will issue its ruling on the Patient Protection & Affordable Care Act (ACA) next Monday, June 25 (and if not then, Thursday June 29 is the next likely date).  This is the most highly anticipated ruling since Bush v. Gore in 2000 and the Court is prepared with enhanced security in case of unrest.  Justice Ginsburg indicated that the decision will highlight ‘sharp disagreements.’  Forbes is reporting that Ginsburg is likely on the losing side of this case and that rumors are that Justice Kennedy will side with those justices believing that the individual mandate is unconstitutional.  Columnist Juan Williams suggests that a ruling against the ACA will further erode public confidence in the impartiality of the Supreme Court.  If interested in a quick review of where this all stands, here is a link to a webinar I attended that provides a nice summary and here’s a very good summary analyzing possible outcomes and degree of impact of those outcomes based on the Richter scale. 

SCOTUS decision the last word?  Not likely – USA Today penned a piece about the four possible outcomes for the ACA and noted that more lawsuits and activity are likely.  The Chicago Tribune has a good Q & A on post-ruling.  Reports are also continuing the theme that the Republicans won’t do anything to re-enact the popular provisions of the law but will work to repeal any parts of the law that the Court doesn’t strike down.  One could argue that this comes with some peril given the popularity of some provisions (i.e. 2.5 million young adults now have coverage on parent’s policies, approx.. 18 million people on Medicare saw drug costs drop, provision creating a pathway to biosimilars, etc.).

Does the Individual Mandate Really Matter? According to this opinion piece, it doesn't matter or shouldn't. The authors state that only 2 in 100 Americans would be affected by the mandate so if it goes away, there won't be the horrible impact being predicted. In a separate interview, a law professor argues that striking the mandate will have limited impact.

Politics of Court decision.  The pundits and legal ‘experts’ are making a mini-industry out of predicting how the Court ruling will impact the upcoming elections.  Check out this short piece with four views published in This Week.  Depending on how they rule, the impact will be felt – here’s a piece about college students bridging medical care and poverty.

Health Reform Bracketology.  You may enjoy filling out the brackets on this site – you make a couple of choices and it generates a summary of what to expect for the future of health reform depending on the scenarios chosen.

How does the Court ruling affect me?  There is so much chatter about the politics and machinations of health reform, Congress, the Courts, etc. that it appears little time has been spent analyzing how a Court ruling will impact individuals.  One impact this summer is the rebate of $1.1 billion to policyholders.  Kaiser Foundation put out a great Q & A to talk about the impact.  They also have an article about the far-reaching consumer protections now in place because of the reform law which could be swept away by the Court – will any of the reforms impact you or someone you know?  If so, would you send me an email to let me know how?  Thanks!  

VP Myths.  The most recent ‘Crystal Ball’ takes an in depth look at the vice presidency, does some myth-busting, and presents some pretty interesting information about the #2 spot.

The Great Seal.  This week marks the 230th Anniversary of Congress adopting the Great Seal of the United States that has our motto ‘E pluribus unum’ (Out of many, One) on it.  Read more about the Seal.

Biotech Industry Concerns.  BIO, the industry association representing biotech and bioscience companies, highlighted its grave concerns over research funding given the current federal budget situation in this Boston Globe article.  The concern will amplify should sequestration occur on January 1, 2013.  Here is a very good opinion piece about how research is a good investment for American taxpayers.

Preventive Services pre-2010.  The CDC issued a press release with findings that prior to 2010, half of all Americans did not receive preventive services.  That’s a pretty shocking number!

Unemployment rate:  62%.  For young adults with disabilities, the unemployment rate is 62%.  Among people with MS it’s 60%.  There is a ‘Ticket to Work’ webinar on June 27 focusing on how to close the gap.

State Profiles of Medicaid/Medicare Enrollees:  CMS has posted a series of Medicare-Medicaid Enrollee State Profiles that examine the demographic characteristics, utilization, and spending patterns of Medicare-Medicaid enrollees in each State. They hope these profiles will provide a greater understanding of the Medicare-Medicaid enrollee population at both the State and national level for government agencies, researchers, and other partners and stakeholders. CMS also released a supplemental document that details the data methodology used for the State Profiles.

BIO honors Sen. Ted Kennedy.   On the last full day of BIO’s annual convention, Jim Greenberg, President and CEO of BIO, announced the founding of the Edward M. Kennedy Biomedical Fund to advance public policy related to healthcare and biotechnology in the US Senate.

Friday, June 22, 2012


On Wednesday, the House passed the reconciled version of the Food and Drug Administration (FDA) User fee reauthorization bill (S. 3187)! 

The reconciled bill is a bipartisan success for the House and Senate leadership, but also for everyone who will benefit from the program’s reauthorization. The user fee reauthorization bill reauthorizes the FDA’s ability to collect user fees for five years. The FDA currently collects user fees for prescription drugs and medical devices. This reauthorization creates two new user fee programs for collecting user fees from generic drugs and generic biologic drugs.  The user fee program is designed to prevent drug shortages and speed-up federal approval of medicines (including lower-cost generics) by creating additional funding from appropriated funds. For fiscal year 2013, the user fees expected to fund the FDA with $1.386 billion dollars!

The other part of the FDA budget is made up of appropriation funding from Congress. In April, the Senate Appropriations Committee released their funding recommendation for the Food and Drug Administration (FDA) for the upcoming fiscal year 2013.The appropriations committee recommended $2.524 billion in funding for fiscal year 2013—a $24 million increase over fiscal year 2012. 

The DC Public Policy Office spent the year advocating for a 6% increase over fiscal year 2012 funding. But, this actual recommendation calls for almost a 10% increase in funding! When the country is facing a budget crisis, we are thrilled that the Senate Appropriations Committee sees the importance of funding the FDA! Although neither the user fee bill nor the appropriations bill has been signed into law, we are thrilled with the additional budget, as it means a quicker review of many treatments for people living with MS!

Tuesday, June 19, 2012


Last week, the Senate Appropriations Committee released the Senate Appropriations Labor-Health and Human Services-Education Appropriations Bill (S. 3295), which includes funding recommendations for many MS Society priority issues. 

This bill included funding recommendations for two issues from the 2012 Public Policy Conference. For these issues, the National Institutes of Health (NIH) and the Lifespan Respite program, the Committee is making the following recommendations for Fiscal Year 2013 funding levels:  
  • NIH should be funded at $30.72 Billion, and
  • The Lifespan Respite program should be funded at $4.99 Million.
The Public Policy Office spent the year also focusing on additional priority issues which were included in the same appropriations bill. These funding recommendations include $40 Million for the Cures Acceleration Network (CAN), $3.16 Billion for the Center for Medicare and Medicaid Services (CMS), $3.47 Billion for the Low-Income Home Energy Assistance Program (LIHEAP), and $11.7 Billion for the Social Security Administration’s Limitations of Administrative Expenses (LAE). 

The Public Policy Office would like to give a “shout out” to those who participated in person or virtually during this March’s Hill day—where Activists asked to increase funding for NIH and the Lifespan Respite Program.  At the 2012 Public Policy Conference in March, MS activists met with legislators to urge $5 Million for Lifespan Respite and $32 Billion for NIH in Fiscal Year 2013. During this difficult budget climate, programs do not typically receive increased funding. It is remarkable that in this budget environment, both programs received an increase and Lifespan Respite was penciled in for nearly our exact request!  Your hard work is truly paying off!

It is important to remember that these are funding level recommendations and do not guarantee the level at which these programs and agencies are funded. These requests have to be reconciled between the House and Senate and then approved by the President to become final. We still have a few more steps to go to secure this funding but we are on the right path because of all of you MS activists who called, e-mailed, and met with legislators!  All of your connections are helping to move us closer to a world free of MS!

Monday, June 18, 2012


The Social Security Administration (SSA) is teaming up with the American Association of People with Disabilities (AAPD) to host two events this month. The events will both focus on the Social Security Administration’s Ticket to Work program.

The Ticket to Work program helps people with disabilities who are receiving Social Security benefits explore employment opportunities and strive for financial independence. The Department of Labor publishes the employment rates for young adults (ages 20-24) with disabilities and young adults without disabilities. In April of this year, the employment rate for young adults with a disability was 30%, versus 62% for young adults without a disability. In May the figures changed only slightly with employment for young adults with a disability increasing to 34% and the employment rate for young adults without a disability remaining unchanged at 62%. The two events this month are an effort by the SSA to narrow this gap.

On June 22nd, at 12 p.m. EDT, Social Security’s Ticket to Work program (@chooseworkssa) and the American Association of People with Disabilities (@AAPD) are hosting a Twitter chat geared to young adults looking ahead at the transition from education to the workforce. To join the conversation, follow the hashtag #DEChat at 12 p.m. EDT. Click here for more information.

On June 27th from 3-4 p.m. EDT, the SSA is hosting a free webinar that will cover work incentives, including Medicaid/Medicare protections, answers to FAQs, and resources for information or next steps. For more information on the Webinar and to register click here.

If you or someone you know is interested in the Ticket to Work program, join one of these events to learn more!

Thursday, June 14, 2012


Last weekend, participants at the National MS Society's Muck Ruckus Philly had a surprise ending--Congressman Patrick Meehan (R-PA-7) joined participants for the final obstacle! This year was Congressman Meehan's first year attending Muck Ruckus Philly (last year he attended Walk MS) and he enthusiastically climbed up a mud hill, slid down a slide, and crawled across the final mud pool!
Congressman Meehan joins participants for the final climb

on their way down
Congressman Meehan completing the final mud pool
This year Muck Ruckus Philly had 4,200 participants and a fundraising goal of $1.1 Million. With obstacles including a fireman's pole and a giant cargo net, participants relied on balance, strength, and agility to avoid mud pits. The 5-mile challenge course for amateur and recreational athletes required sloshing, swinging, slipping, and climbing across land, water, and mud.

Muck Ruckus is a chance for participants of all ages to enjoy themselves, while raising awareness and funds for the National MS Society. Muck Ruckus races take place around the United States. Click here to find a Muck Ruckus race in your area!

Thank you Congressman Meehan, all of the participants, and volunteers for making Muck Ruckus Philly a huge success and proving that ending MS is dirty work!
Congressman Meehan after participating in Muck Ruckus Philly
(left to right: MS activist Allison Coia, MS Society Staff Karen Mariner, Greater Delaware Valley Board Member Mike Spaeder)  

Tuesday, June 12, 2012


Each year, National MS Society Bike MS events bring people together to help create a world free of MS by raising funds and awareness. The funds are used to support programs, services, and MS research. In D.C., this event was on June 9-10, when more than 1,000 participants gathered in National Harbor, Maryland with a single mission—to end MS.

This year’s two-day ride was the 30th Anniversary of the D.C. Metropolitan Area’s Bike MS. The National Capital Chapter’s Bike MS “Ride the Riverside” had routes ranging from 30 miles in one day to 150 miles over two days. Together these dedicated riders raised more than $800,000! At the finish line the participants were met with food and drink along with live music and lots of cheering fans.

Rider Jason Flory, described the weekend event enthusiastically. “Amazing course support and great atmosphere! Riders of all ages and abilities join together for a meaningful cause. Only my second time participating in the event but I plan to come back next year and all the years that follow.”
Jason Flory
“Ride the Riverside” with the National Capital Chapter is one of the 100 rides taking place across the United States this year. Over the next few months riders in all of the states across the country will bike to create a world free from MS. Are you interested in participating in Bike MS? It may not be too late! Click here to find a ride near you.

Thank you to all of the riders, volunteers, and cheering fans who help make Bike MS a success!