Wednesday, May 29, 2013


World MS Day is today, May 29!!  World MS Day’s theme highlights young people and MS, the most common neurological disease affecting young people.  The campaign looks to bring awareness about MS and how it affects everyday life.

This year, people from all over the world are posting their personal motto as part of World MS Day – so please go to My Motto and submit a personal motto that you live by or wisdom for when times are tough. These mottos inspire us all to do more in creating a world free of MS. Events will be taking place in over 60 countries around the world, and the Society has worked closely with colleague organizations in the MS Coalition and MS International Federation.

In conjunction with World MS Day, we ask that you urge your Senators to support the United Nations Convention on the Rights of Persons with Disabilities (CRPD) so Americans with disabilities – including young adults and veterans – can travel the world beyond America’s shores. The treaty aims to enhance the rights of persons with disabilities by asserting that they have the same rights as persons without disabilities, similar to the principles of the American with Disabilities Act (ADA).

Last December, the Senate failed to ratify the treaty by just five votes. The first step in the renewed ratification process is to have new hearings in the Senate Foreign Relations Committee. Click here to ask your Senators to support the CRPD and the rights of persons with disabilities around the world – to again pass the CRPD out of the Foreign Relations Committee with bipartisan support! Let’s make our voices heard on such an important day that highlights the need for a world free of MS!

To find other ways to get involved on World MS Day, please click 


Did you know that Memorial Day – the day we take to honor those who died serving our country in the Armed Forces – was originally called Decoration Day to honor Union and Confederate soldiers who died during the civil war?

Be sure to peruse this entire edition – for the first time I have included a tidbit about a creative approach by American Samoa to address an access issue; two tidbits pertaining to Harry S Truman, and under the ACA Implementation News section, there are some important webinar opportunities that may be of interest.  Enjoy!

World MS Day – what’s your motto?  May 29 is World MS Day and the Society is supporting this awareness campaign through our website, social media, email, chapter activities, media outreach, and more.  This year people are posting their personal motto as part of World MS Day – it’s quick and easy so please go to My Motto and submit a personal motto that you live by. These mottos inspire us all to do more in creating a world free of MS.  This of course is a worldwide effort and we’ve been engaged with colleague organizations in the MS Coalition as well as the MS International Federation.

Long-Term Services & Supports Petition.  The Society is pushing out an online petition asking Congress to create more flexible, affordable long-term services and supports (LTSS) options for Americans.  Once 25,000 people have signed the petition, it will be delivered to Congress and hopefully launch discussion and action.  Be sure to check out the great blog post by Michael Ogg, an activist from New Jersey with primary progressive MS who is concerned about access to LTSS, and of course sign the petition yourself!

Debt Ceiling fight looms.  Increased tax revenues and a payment from Fannie Mae/Freddie Mac has provided a slight cushion but Congress will still need to take action sometime this fall to increase the federal debt limit in order to avoid default.  Speaker Boehner is trying to corral his caucus for a unified approach, lest he have to rely on Minority Leader Pelosi to deliver them.

Federal Budget Update.  I was going to leave this blank but thought that would be too sarcastic.  There really has been no movement – Sen. John McCain has expressed his dismay that his own party is putting up roadblocks to having a conference committee to reconcile the House and Senate budgets, and freshman Sen. Ted Cruz announcing that he doesn’t trust his own party in those negotiations.  Meanwhile there are some reasons why getting a budget done this year is attractive (as opposed to passing another ‘continuing resolution’ to keep funding at current levels). 

‘Scandals’.  Well, that’s all I need to say – plenty of 24/7 coverage of the various issues out here.  Or you can watch the TV series for a different ‘Scandal’.  In the meantime, if you want a few good chuckles, look at these one-liners by Jay Leno recently.

Legislative Update.  Click here to find a summary of legislative issues that we provided recently on a phone call with government relations staff.

Appropriations Committee Targets.  Big, significant cuts are likely for health and human services programs given budget caps – the cuts could be as much as 20% (and that’s on top of the sequestration cuts that went into effect March 1).  The impact on medical research is shown in this document which includes the quote “2013 is a bad year to have a good idea.”  One estimate is that NIH could lose nearly $5.4 billion if something doesn’t give.  Here’s a letter on behalf of over 900 groups highlighting the draconian impact of the budget targets.

Favorite John Boehner Quote:  “It is hard to keep 218 frogs in a wheelbarrow long enough to get a bill passed.”  May 20, 2012 on ABC.

Limits of Telemedicine.  NPR had a Talk of the Nation episode talking about the promise and limitations of telemedicine.  One of the guests was Dr. Ray Dorsey who has incorporated telemedicine as a key component of his medical practice for patients with Parkinson’s Disease.

Truman’s Yacht rusting away
.  President Harry S Truman used the USS Williamsburg as a floating White House but now it’s just a rusting ghost ship in Italy hoping for new life.

Speaking of the Truman Era . . .
  Truman was one in a long line of presidents who attempted to reform the American health care system.  At the time the American Medical Association was one of the biggest opponents to change.  This story talks about how a British painting played a critical role in AMA’s successful efforts to thwart universal health care in the U.S.

American Samoa’s Frequent Flyers.  The government of American Somoa has established a frequent flyer account to deposit all frequent flyer miles of government employees traveling on government business.  Those miles will then be used to help impoverished medical patients and students travel off the islands when necessary to access care.  

Health Reform Implementation News:

  •  Gettin’ Ready!  Since our last ACA News, there’s been loads of ACA implementation activity on both the federal and state government levels. It’s all about getting ready for the October 1st launch of the Health Insurance Marketplaces (aka Exchanges) and the major reforms coming in January.   Outreach and education opportunities are ramping up, health insurers are lining up to get their new health insurance policies certified, and really smart people are trying really hard to make complicated stuff sound simple.     

  • HHS Explains it all to you.  HHS is offering two free webinars (a “101” and “advanced”) on the Marketplaces in June and July. Registration is required, and the promise to add more dates if the demand is high.  Click here for dates and links to registration. Please circulate, and note the free e-mail sign-up on bottom of the page.

  • BIG Changes for PCIPs:  To provide desperately needed health insurance coverage to people that had been denied coverage by insurers due to their pre-existing condition, the ACA established a stopgap coverage program known as the Pre-Existing Condition Insurance Plan (PCIP).  Funded entirely through federal dollars, PCIPs were up and running in every state within a few months after the ACA was enacted in 2010, with the goal of providing temporary coverage for the un-insured in poor health until more options were available in 2014.  Twenty-seven states chose to run their own PCIP, and others offered coverage through a federally-administered PCIP.

      As many anticipated however, the $5B allocated for the PCIPs     may not be enough, and the funds may run out before the PCIPs’ scheduled termination  at the end of the year.  In February, HHS announced that the PCIPs could no longer accept new enrollees and other significant changes to federal PCIP coverage were made.  In recent weeks, to further reduce costs and preserve the last remaining PCIP funds, HHS notified the state-run PCIPs that the remaining funds would be capped: the states could reduce coverage in their own programs, or switch their enrollees to the federal PCIP.   At last count, 10 states planned to maintain their own PCIPs, while enrollees in 17 other states’ programs will be notified their coverage will be switched to the federal PCIP for the remainder of the year.

NOTE: Changes to the PCIPs could result in increased costs, the loss of benefits or coverage  for some enrollees with MS.  Anyone with MS that is negatively impacted by these changes can speak with a MS Navigator (1800-FIGHT-MS) for help accessing Patient Assistance Programs and other support until their new coverage takes effect.                  

  • Let’s make a Deal:  News is trickling in from the states about their negotiations with insurance companies that want to sell policies through the Exchanges.  Because all health plans must meet specific standards to be deemed ‘Qualified Health Plans’, the process of reviewing and certifying health plans is providing the first look at what policies sold through the Exchanges will actually look like, and what they’ll cost.  Inquiring minds that want to know more about states’ efforts to certify health plans may want to check out NASHP’s free 90 minute webinar about Qualified Health Plans on Wednesday, May 29 at 2:30 EST.  If  you  want to understand more about how the Affordable Care Act will make health insurers more accountable for the premiums they charge, read up on the new process for reviewing insurance rates.      

  • Feds Make It Easier For States To Enroll Poor Under Health Law:  The Obama administration informed state officials that they could simplify Medicaid to handle the barrage of potentially millions of new enrollees next year when the healthcare law expands coverage. Medicaid Director Cindy Mann wrote a letter to state officials outlining several ways states could streamline enrollment for adults, including using data people have already submitted to qualify for food stamps and allowing adults to remain enrolled in the program for up to a year, even if their income changes. Policy experts said letting adults stay in the program when their income changes is a "big deal," because it would reduce the large number of people churning in and out of the program and thereby affecting their ability to get care.

That’s it for now.  We hope you had an enjoyable Memorial Day, remembering those who gave their lives in service of their country.  And of course our thoughts are with so many people who lost loved ones in Oklahoma as a result of the tornadoes that hit the Moore, OK area.

Friday, May 24, 2013


MS activists from Virginia attend lunch with House Majority Leader Eric Cantor (VA-7)

On May 8th, House Majority Leader Eric Cantor (VA-7) hosted a lunch in the Library of Congress to bring together Virginia-based patient advocacy groups and discuss the importance of medical research. Approximately two-dozen activists attended the event, including four MS activists from Virginia. Sarah Keitt, one MS activist and a person living with MS who was in attendance, described the event as “a unique opportunity for health advocates to educate Congressman Cantor on medical research issues that are important to our community. The event helped me realize that we cannot be passive when it comes to protecting medical research funding.” Medical research funding at the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research Programs (CDMRP) has been and remains a top priority for the National MS Society.

Majority Leader Cantor addresses Virginia-based activists over lunch
With activists from a number of disease groups filling the room, Cantor, who was joined by his senior staff, spoke for roughly twenty minutes on his support for medical research, the importance of innovation, and the critical roles that the NIH and the Food and Drug Administration (FDA) play in advancing medical research and finding cures. At one point, Cantor declared, “There is probably no higher priority after national security than finding cures for diseases.”

Sarah asked Cantor the first question—if and how, was he concerned about the effects of the sequester on NIH funding? Cantor responded with concern that underfunding future innovative projects could create a gap in medical research advancements. As Sarah points out, “people should pay close attention to all future budget debates and contact their legislators to let them know about the important, lifesaving work being conducted by NIH-funded researchers across the country.” Thank you to the MS activists from Virginia who attended the event with Majority Leader Cantor and to MS activists across the country for making sure your legislators keep medical research a priority!

Tuesday, May 21, 2013


Michael Ogg, MS Activist, New Jersey
I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm. To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.

The home aide who arrives first thing in the morning gets me out of bed using the ceiling-mounted overhead lift. She (most but not all home aides are female) then showers me, dresses me, makes and feeds me breakfast. Other aides give me lunch and dinner, wash my clothes, do other errands for me and put me into bed at night. Without the daily help from my home aides, I would have to live in an institution.

I was fortunate that through my last employer I had the option to purchase long-term care (LTC) insurance, but like most LTC policies, mine has a lifetime dollar cap. Mine will run out in less than four years. I am 58 years old. Through Social Security Disability Insurance (SSDI) I have been on Medicare for some time – but Medicare does not pay for home aides. For over two years I've been trying to get onto Medicaid which has a very low income eligibility requirement, but covers many aspects of long-term care including home aides. I have now set up a Special Needs Trust (SNT) which is a way of sheltering assets and income for Medicaid purposes. There is not space to go into the details here, but essentially an SNT is a means of deferring bankruptcy until death instead of spending down first in order to receive Medicaid. But it's complicated and there are many restrictions and limitations.

It seems that many of the things we’re told to do to be responsible citizens work against us when trying to get Medicaid. In fact, the obstacles to living in one’s own home in the community, which is the stated aim of the Supreme Court decision Olmstead v. LC and most modern policies, are so great that it becomes financially impossible to live in a community – and a nursing home is the only remaining option. If I don’t qualify for Medicaid soon, I will use up all the remaining funds in my LTC policy. I will then have to use the remainder of my savings for long-term care, and then when I run out of money, I will qualify for Medicaid. This is the so-called “Medicaid spend down.” To qualify for Medicaid will make supporting my daughters (ages 16 and 13) very difficult; Medicaid will have a lien on my SNT, and if I am not bankrupt before I die, the lien must repay what was spent on me, leaving no estate for my daughters to inherit.

For people with progressive MS, long-term services and supports (LTSS) may be needed for decades after diagnosis. Even for those with the option and ability to afford private LTC insurance, there is no private insurance that I am aware of that would provide the necessary level of support. The costs of LTSS are so high that very few people can afford it on their own. This leaves people like me with the following choices: bankruptcy, nursing home, or both. We as a country simply have to do better.

Though only an estimated one-fourth of people with MS will need LTSS, many people with primary-progressive MS like me will need it sooner – rather than later – and for a longer period of time. The need for more affordable, flexible LTSS options also impacts millions of other families living with chronic or disabling diseases, not to mention the fact we have an aging society that will require more and more LTSS. Raise your voice as an MS activist and sign this online petition to remind Congress to address LTSS and create more realistic long-term care options. I’m proud to say I’ve already signed.
A former professor and researcher in physics and software engineering at major U.S. and Canadian universities, employee at Bell Labs and Chief Technology Officer at a New Jersey start-up organization, Dr. Michael Ogg was diagnosed with multiple sclerosis in 1997. Since then, he’s become an MS activist for improved accessibility and ADA compliance, active volunteer support group leader, speaker at high-profile special events, and published author. His essay entitled “Running Out of Time, Money and Independence?” appeared in the journal Health Affairs in January of 2011 and received the 2011 Best of Award in Family Caregiving by the Family Caregiver Alliance; the essay described his life at home with a severe disability and was also covered by The New York Times. His “Hard Lessons from a Long Hospital Stay” essay – focused on issues affecting people with physical disabilities during hospitalization – was published in the April 2012 edition of the American Journal of Nursing.  

Tuesday, May 14, 2013


PA Rep. Bizzarro, Team Captain Lori Straub and Rep. Thompson cut the ribbon at Walk MS   
U.S. Representative Glenn "GT" Thompson (PA-5) spoke on the House of Representative's floor on May 6, 2013 about his experience at Erie County's Walk MS event.  Representative Thompson participated in the event and was a member of Lori and Tommy Straub's "Walk a Myelin My Shoes" Walk MS team. 

In the speech (which can be seen here), Representative Thompson remarked on the nationwide presence of Walk MS and thanked Lori and Tommy for extending the invitation to him to join their team.

John Platt and Representative G.T. Thompson in discussion

In true MS activist form, John Platt of Pennsylvania took the opportunity to discuss the importance of MS research funding through the Congressionally Directed Medical Research (CDMRP) and other priority issues with Representative Thompson at the Walk MS event.  John's effort illustrates the need to always be thinking about how to engage and educate a member of Congress about MS and issues important to our community at a moment's notice!

We thank Representative Thompson for raising awareness about multiple sclerosis in the U.S. Congress through his speech on the House floor and for participating in Walk MS! We also thank Lori and Tommy Straub, John Platt and other MS activists for their tireless efforts to make Walk MS such a successful event!

Monday, May 6, 2013


Congress is out of session this week so DC is pretty quiet however we do have some good news in the first item below about CDMRP!

Our team has been on the Hill the past couple of weeks with our partners in meetings with freshman and sophomore members of the House, highlighting the importance of health-related funding and the critical need for a vibrant and fully funded Food and Drug Administration so that new therapies and medical devices don’t linger in a backlog. 

CDMRP Success!  While we continue to be concerned about the impact sequestration will have on the MS Congressionally Directed Medical Research Program (CDMRP), we received word recently that the funding level approved for FY 2013 was what we had been championing:  $5 million.  That’s an increase of $1.2 million over FY 2012 which is quite a feat in this budget climate!  We know the $5 million will likely get shaved a bit with sequestration, but it’s great that we are starting at a higher number than the previous year.  This success would not have occurred but for the advocacy of MS Activists around the country, so a huge thank you and congrats!

CDMRP embraces social media.  You can now follow CDMRP on twitter @CDMRP and it now also has a YouTube Channel.

FDA Launches Patient Site.  The Food and Drug Administration recently launched the new Patient Network site.  It was built from the ground up with patients in mind, and is independent of the main FDA web site.  The agency engaged patients in the development of the site, conducting focus groups and usability testing.

R & D to take a $9.3 billion hit.  According to the American Association for the Advancement of Science, the government is set to decrease funding for research and development by a net $9.3 billion this fiscal year alone. The cuts will come from the Department of Defense ($6.4 billion), the National Institutes of Health ($1.5 billion), NASA ($749 million), the Department of Energy ($479 million) and the National Science Foundation ($227 million).

Sequester Victors.  Everyone probably knows by now that Congress passed a bill, signed by the President, to allow a shift of funds at FAA to resolve the ‘crisis’ that caused thousands of air travel delays.  Now others are lining up hoping for their own sequester ‘fix.’

Pricing Transparency.  A recent article highlights one area in health care that is drawing bi-partisan support:  pricing transparency.  The piece notes an Institute of Medicine study from 2012 suggesting that 30 cents of every $1 is wasted in health care.
Long-Term Care PetitionAdvance CLASS has launched a petition on calling on Congress to create broader access and flexible and more affordable long-term services and supports options.  You can sign the petition here.
Airplane Access Petition.  There is another petition calling for airline accessibility for the approximately 1.5 million Americans who are wheelchair bound.  You can sign here and pass along to others.

Road Bumps for Obamacare?  Well it seems pretty fashionable lately for Ds and Rs to take cracks at the Affordable Care Act.  It’s certainly a complex law with a lot of moving parts and Society staff continue to actively engage in implementation efforts to best position people living with MS.  Even Sen. Maj. Ldr. Harry Reid has expressed concerns.  There was a recent spat over supposed efforts to exempt Members of Congress and staff and now an effort to require all federal employees to fall under the ACA. 

Health System Data Center.  The Commonwealth Fund recently redesigned its health system data center where you can interact with data from The Commonwealth Fund’s state, local, and child health system performance scorecards

Verify the news, maybe?  The Drudge Report got caught publishing a satirical story from the Daily Currant (a satirical news source like The Onion, just not as funny) about a pizza shop denying NY Mayor Bloomberg a second slice of pizza in protest of the soda ban.  Politico’s Dylan Byers highlights a few other new sources that have done the same.

New Study on Medicaid’s Effects on Recipients Gets Plenty of Attention. Everybody who’s anybody is writing, talking and/or blogging about what this study of Oregon Medicaid recipients means.  Let Time magazine sum it up for you, then you decide.

Health Reform Implementation News:

  •   Commonwealth Fund Study Highlights ‘The Price of Being Un-Insured’:  The Fund’s most recent updates on trends in coverage reveal nearly half (46%) of adults ages 19 to 64, or an estimated 84 million people, did not have insurance for the full year or were underinsured and unprotected from high out-of-pocket costs. Yup – healthcare reform can’t get here fast enough!

  •  Shorter is better! The President and Secretary Sebelius want you to get excited about their new, and much shorter, application form for health coverage through the Marketplaces. The application for individuals is three pages, and the application for families is reduced by two-thirds, to seven pages. When enrollment begins in October (for coverage starting in January), these will be the application forms that anyone can use to apply for the new Health Insurance Marketplace, Medicaid, the Children’s Health Insurance Program, and tax credits that will help pay for premiums.         

  • Some States Push Back Against ACA’s Higher Premium for Smokers:  California could  join Massachusetts, Vermont, Rhode Island and the District of Columbia in making sure smokers aren't charged more under the new federal law.  
  • Kaiser Health News’ ‘Insuring Your Health’ Column features answers to questions submitted by readers to help clarify various aspects of healthcare reform.  Here’s a few on employer-sponsored insurance (ESI).   
  • It Ain’t Over Yet: States continue their wrangling over whether to take all available federal dollars to expand their Medicaid programs. Check out the latest tracking poll.  
  •  AARP’s Public Policy Institute survey finds two-thirds of states are integrating care for their “dually eligible” citizens, of people enrolled in both Medicare and Medicaid. Will the goals of improving health at lower cost through various care coordination models be realized? Their brief helps explain this major program of the Affordable Care Act, different approaches among the states, and some of their implications.  

That’s it for now!  Have a great week!!

Thursday, May 2, 2013


Nicole Nida, Rep. McMorris Rodgers and Mike Burns in Spokane
MS activists Nicole Nida and Mike Burns recently awarded Representative Cathy McMorris Rodgers (WA-5) with the 2012 Representative of the Year Award in her district office in Spokane, Washington.  In bestowing its highest honor for public officials, the Society applauds Representative McMorris Rodgers’s leadership and dedication to issues that improve the lives of people living with multiple sclerosis and their families.

Representative McMorris Rodgers has supported the National Neurological Diseases Surveillance System Act and the Lifespan Respite Care Reauthorization Act.  In addition, she has co-chaired the Bipartisan Congressional Disability Caucus and has been a member of the Congressional MS Caucus.
Representative McMorris Rodgers has a son with a disability and is recognized as a leader on disability issues by members of both sides of the political aisle.

In addition to presenting Representative McMorris Rodgers with the Award, Nicole and Mike discussed the importance of preserving funding for programs and agencies that are important to people with MS, such as the National Institutes of Health (NIH), Food and Drug Administration (FDA), Congressionally Directed Medical Research Programs (CDMRP) and the Lifespan Respite Program.  Our MS activists also gave Representative McMorris Rodgers a copy of the Society’s magazine “Momentum,” the MS connection Newsletter, and a WALK MS trading card.

Serving since 2005, Representative McMorris Rodgers is the Chair of the Conference, the fourth-highest-ranking position among House Republicans and is the highest-ranking Republican woman in Congress.

We thank Representative McMorris Rodgers for her continued leadership on these important issues for people living with MS and their families. We also thank our MS activists all over the country who continue to meet with public officials to raise awareness about MS!