Friday, October 26, 2012


Medicare Settlement – Victory for MS patients.  The Society was a plaintiff in litigation against Medicare alleging that it illegally denied services to Medicare beneficiaries with MS and other chronic illnesses by misinterpreting the law.  A settlement agreement has been reached and you can read more about it in this New York Times article and you can read the Society’s statement here.  The Society joined as a plaintiff in this action following approval by the Society’s Board of Directors in November, 2010.

Next Edition.  The next Federal Fridays will be on November 9 and we will know who the Commander in Chief will be and the make-up of the House and Senate.  While there is a lot of chatter about what will happen with sequestration, tax increases, and the ‘fiscal cliff,’ it’s really all speculation – once the voters have spoken, then the real assessments of what is possible will begin.  However already liberal groups and labor are preparing for battle . . . but not with the GOP, with Obama and the Democrats.

Week of Research Advocacy.  Our partner Research America is leading a week of advocacy for medical research November 12-16, 2012 in a concentrated effort to let Congress know that cutting research funding is the wrong approach.  More details at

Science/Election Resources.  There have recently been several items pertaining to science and the presidential election.  NPR had this story about science being a ‘non-issue’ in 2012; the American Association for the Advancement of Science (AAAS) has posted responses to science questions posed to Obama and Romney; and finally, fourteen of the "The Top American Science Questions: 2012" were posed to both presidential candidates by ScienceDebate.Org.

$1.7 Trillion in Savings under GOP Medicaid planPlans to repeal the Affordable Care Act and turn Medicaid into a block grant program would save the federal government $1.7 trillion from 2013 to 2022, a 38-percent spending reduction, according to a report today by the Urban Institute for the Kaiser Family Foundation.  While the savings sounds great, it comes at a significant cost:  31 million to 38 million fewer people would have Medicaid coverage in 2022 and the program (it currently serves around 62 million people, half of whom are children).

Kennedy on CRPD.  Longtime champion for the disabled, Ted Kennedy Jr., penned this piece for Politico, advocating for Senate ratification of the Convention on the Rights of Persons with Disabilities (CRPD).  To date, members of the Society’s Action Alert list have sent over 7,500 messages about CRPD to their United States Senators – this is fantastic engagement!

FDA extends review time of new MS drug.  The Food and Drug Administration has extended the time it will take to consider Biogen’s new MS therapy.  They indicate that they simply need more time.

MS Therapies to double by 2021.  Decision Resources finds that, through 2021, the number of disease-modifying therapies approved for the treatment of multiple sclerosis (MS) will double in the world’s major pharmaceutical markets.

NIH Funding Update.  After the president signed the Continuing Resolution (to keep the government operating) the National Institutes of Health issued a statement saying it would fund research projects ‘up to 90%’ of the previously committed level.

25 Women to Watch.  The Hill compiled its list of 25 women to watch on the hill including obvious picks like Condoleezza Rice and Hillary Clinton.

LIHEAP Funding Risk.  With the threat of automatic spending cuts looming, there has been a call for the release of all Low Income Home Energy Assistance Program (LIHEAP) funds so the money doesn’t get stuck in any upcoming budget logjam. 

Kaiser Permanente CEO interview.  George Halverson, CEO of Kaiser Permanente, is interviewed about the health system, Kaiser, and the future.  Halverson recently announced plans to retire.

That’s it for now!  For those on the East Coast, quite a storm heading your way – be safe.  And remember to vote everyone!

Thursday, October 25, 2012


Many times a year, MS Activists around the country contact their legislators to urge support of policies and funding that will benefit people living with multiple sclerosis (MS). Today, the Society is pleased to announce that another type of activism—judicial action—has resulted in a settlement that will help ensure that people with MS get the home health care, skilled nursing home stays and outpatient therapy they need.

Just two years ago, the Society joined as an original plaintiff in a class action lawsuit that challenged the Centers for Medicare and Medicaid Services’ (CMS) inappropriate and illegal practice of denying Medicare coverage to those who are unable to show that they are improving from certain skilled care services, including therapy. This practice has been particularly impactful for people with chronic, degenerative diseases such as MS for which services such as therapy may be exactly what is needed to help slow deterioration.

As a result of the lawsuit, the government has agreed to take corrective action so that it will not happen in the future. The government will revise relevant portions of its Medicare Benefit Policy Manual and engage in a nationwide Educational Campaign about the corrected maintenance coverage standards. Members of class will also be entitled to a re-review of their denied claim within the next year.

We at the National MS Society are very pleased with the progress which has been made in this case. Medicare beneficiaries living with MS and other chronic illnesses will now definitively be able to receive important needed health care services that prevent decline and maximize independence. To learn more about this important settlement and about one of its inspirational plaintiffs who lives with MS, click here.

The Society recognizes the work of the Center for Medicare Advocacy, Inc. which has coordinated the legal proceedings for plaintiffs in this case and acted as lead counsel. The other national organizations that entered the case as plaintiffs are: Parkinson’s Action Network, the Alzheimer’s Association, Paralyzed Veterans of America, United Cerebral Palsy and the National Committee to Preserve Social Security and Medicare.

Wednesday, October 24, 2012


Last month, over 80 disability and aging organizations joined together to sponsor the non-partisan National Forum on Disability Issues (NFDI).  Thousands of disability activists from across the country invited both Presidential campaigns to participate in the forum through Twitter, Facebook and e-mail invitations.  As a result of their hard work, both President Obama and Governor Romney sent representatives to speak about their positions on disability issues.  President Obama sent Edward M. “Ted” Kennedy, Jr., and Representative Cathy McMorris Rodgers (R-WA) spoke on behalf of her party. 
On September 28th, representatives from both Presidential campaigns and U.S. Senate from Ohio took the stage to address disability issues.  With in-person registration full, the representatives spoke to a room of 500 Ohio voters.  Over 2,500 individuals watched the forum live via webcast! 
Did you miss the event or want to watch it again?  The full forum is now posted online.  Click here to watch the forum or click here to view photos of the event.  You can also read what the speakers said here in the complete transcript. 

NFDI is the only national event that brought together representatives from both Presidential campaigns to focus on disability issues.  The moderator, former CNN White House Correspondent Frank Sesno, engaged the candidates and their representatives on issues including employment, Medicaid, health reform, long-term services and supports and education.

This event, the second NFDI, was only possible due to the efforts of disability activists around the country.  NFDI helps voters who are concerned with disability issues engage in the voting process.  One MS Activist from the Society’s Ohio Buckeye Chapter said, “It was a very good experience and confirmed for me which candidates I would vote for.”  Thank you to all of the activists across the country for making this historic event possible!

Wednesday, October 17, 2012


Each year, the National MS Society honors local volunteers for their outstanding service to the Society and the MS community.  Nomination forms are submitted for each candidate and reviewed by panels from around the country.  These panels face the daunting task of selecting the final honorees from the ever impressive nominees.  The categories for Hall of Fame are Advocacy, Funding the Mission, Health Professionals, Programs and Services and Scientific Researchers.  Click here to see the 2012 Hall of Fame volunteers for each category.

In addition to each category, the Society awards a Volunteer of the Year and Lifetime Achievement Awards.  The Volunteer of the Year award goes to Dean Munger from Michigan and the Lifetime Achievement Awards—which are reserved for volunteers who have served the Society for 35 or more years—have been handed to Dr. Gary Birnbaum, Dr. John Fleming, and Mary Reed Spencer.  To read more about those recipients, click here.

This year’s Advocacy Hall of Fame honors seven activists who boldly advocate for persons affected by MS at the national, state, and local levels.  The honorees are:

  • Patti Barker, South Central Region  
  • Yvonne Brown, National Capital Chapter   
  • Linda Y. Buchwald, M.D., Greater New England Chapter  
  • Robin D’Andrea, Long Island Chapter   
  • Michael C. “Mike” Daisley, Greater Carolinas Chapter
  • Bonnie Danowski, Arizona Chapter   
  • Nan Luke, Pacific South Coast Chapter

The honorees include Chairwomen and members of Government Relations Committees, persons living with MS, a member of the Society’s Medical Advisory Board, a licensed social worker, attorneys and a woman who is the primary caregiver for her husband with MS.  You can read their biographies and learn more about each honoree’s service to the Society here.

This diverse group of individuals has at least one thing in common—their passion and activism is moving us closer to a world free of MS.  Thank you, 2012 Advocacy Hall of Fame honorees, for your years of advocacy leadership on behalf of persons living with MS!

Friday, October 12, 2012


VA Telemedicine Announcement:  The Department of Veterans Affairs (VA) published a final rule that aims to encourage the use of telemedicine by veterans. Under the rule, the VA will no longer charge beneficiaries a copay when receiving in-home care that uses video conference technology.

Redefining Medicine.  The New York Times has a story about how medicine is being redefined with ‘Apps and iPads’.

Feds Crackdown on Fraud.  A federal health care fraud strike team have charged 91 providers for fraudulent billing totaling $430 million.

Personalized Medicine.  Sen. Bill Frist, MD, penned a piece for the Institute of Medicine about the future with personalized medicine:  “With personalized medicine, researchers use extremely sophisticated data analysis to separate a large population of people who used to be treated uniformly into smaller, more discrete, "personalized clusters" of people who share some important physiology or biochemical variants that respond in different ways to a particular treatment.”

Debates.  We have now had the first two debates of the presidential election season and while I am not going to pontificate about them or candidate performances, I ran across this quip by the chair of the RNC, Reince Priebus, quoted by National Journal, lowering expectations for Paul Ryan in advance of the vice presidential debate, and thought it was just too funny not to pass along:  "It's a nervous situation... this is his [Paul Ryan’s] first time.  Joe Biden's been doing this since the 1800s."

Sabato’s Take.  Political scientist Larry Sabato and his team at the University of Virginia had predicted that the presidential debates wouldn’t impact that election unless there was a ‘major blunder’.  Well, his take today is that Obama’s performance was the major blunder and it has therefore moved the needle.

Memorable Debate Moments.  Looking at past presidential debates, this site highlights 8 memorable moments.

Medicare ‘Cage Match’.  Politico penned the headline in reaction to the performance of Rep. Paul Ryan and Vice President Joe Biden’s during last night’s debate.

Inspiring Story.  I ran across this article about a man born without complete arms/legs and how he hasn’t let that stop him.

‘Radical Surgery’.  That’s how the Commonwealth Fund summarized the impact that the Simpson-Bowles debt and deficit reduction plan would have on health care in the U.S.
Means-testing seniors.  This recent Boston Globe article talks about how, no matter who ends up in the White House, there is a strong chance that some form of means-testing will factor into entitlement programs for seniors (Social Security and Medicare).

Losing Health Insurance.  Rep. Paul Ryan has said that under the Affordable Care Act, 20 million Americans will lose insurance.  This ‘fact check’ shows how Rep. Ryan came up with that number.  The Commonwealth Fund released a report last week comparing the Obama and Romney health plans, concluding that by the year 2022, under Obama’s plan, there will be 27 million Americans without health insurance whereas under the Romney plan, that number jumps to 72 million uninsured.  See page 25 of the report for details.  You can find state by state and national data from the report here.

‘Rogue’ Stem Cell Therapies.  Nobel laureate Shinya Yamanaka warned patients on about unproven "stem cell therapies" offered at clinics and hospitals in a growing number of countries, saying they were highly risky.

The Nats.  While still a Twins (formerly the Washington Senators) fan, I can’t let this pass without a mention.  It has been 79 years since a Washington ball team has played in the post-season – the Washington Nationals have a ‘do-or-die’ game tonight to see if their post-season play will continue for the first time since 1933.  Either way, great season for the Nats – Congrats!