Monday, July 30, 2012


I will apologize up front – this edition got a little long because there’s just so much going on!  Please read to the bottom however – you’ll learn about a recent bill introduction named after a U.S. Representative’s sister who lived with MS.   And remember to forward to whomever you think would find of interest and tell them they can subscribe by sending an email to

UPDATE:  Disability Treaty moves to Senate Floor.  Yesterday the Senate Committee on Foreign Relations marked-up the Convention on the Rights of Persons with Disabilities (CRPD) and after a few amendments, it passed out of committee with a strong bi-partisan vote of 13 to 6.  We haven’t heard yet when the treaty will be taken up by the full Senate but when we do, we’ll be sure to get the word out.  Thanks to everyone who helped send emails and make calls!  (Photos at left, Senators Kerry & Lugar talking after passage of treaty and at right, MS Activists Phil Posner and Yvonne Brown)

Birthdays!  Well, more like anniversariesMedicare and Medicaid turn 47 next Monday and yesterday was the 22nd anniversary of the Americans with Disabilities Act (read presidential proclamation).  National Capital Chapter president Chris Broullire and MS Activists represented the Society at a White House sponsored event and later in the day I joined Karen Jackson for an event hosted by Asst. Attorney General for Civil Rights Tom Perez at the Department of Justice that included screening the film Lives worth Living:  The Great Fight for Disability Rights, which is a very moving film about the disability rights movement (that every American should watch in my opinion).  It will be showing on PBS stations soon.  (Pictured above is Asst. AG Tom Perez and at right are MSA Activist Karen Jackson and Paralyzed Veterans of America Assoc. Advocacy Director Lee Page)

Would GOP sweep, sweep away health law?  I’ve pointed out before that since the Affordable Care Act was passed using the budget reconciliation process, that only 51 votes are needed in the Senate to repeal the law.  However, that doesn’t factor in that passing a budget bill isn’t necessarily the easiest thing to do in the first place and that a myriad of other issues could come into play.  See this article for more detail.

Fall out for Chief Justice Roberts.  It has been widely reported that the chief justice changed his position on the individual mandate, siding with court liberals to uphold the linchpin of the Affordable Care Act.  A recent poll shows how his ruling has impacted his standing among the public.

Will you pay more taxes because of ACA?  According to this article, few people (as a percentage of the population) will actually end up paying more in taxes to cover costs associated with the health law.  Plus, the president announced that he views the individual mandate not as a tax or a penalty, but more as a ‘principle’.

Former Sen. Maj. Ldr. Bill Frist, MD, on Exchanges.   The former GOP leader recently had this to say in an opinion piece:  “Originally a Republican idea, the state insurance exchanges mandated under the Affordable Care Act (ACA) will offer a menu of private insurance plans to pick and choose from, all with a required set of minimum benefits, to those without employer-sponsored health insurance.”

Ten Things You Didn’t Know Were In The Health Law.  Kaiser Health dug through the Affordable Care Act to unearth ten items you likely didn’t know about then the ACA became law.

1 in 4.  According to a new study by Families USA, one in four Americans has a pre-existing condition which means that pre-health reform, up to 25% of Americans could have been discriminated against due to that condition.  Of course, this includes people living with MS.

New ‘score’ shows ACA to save $84 billion.  The Congressional Budget Office (CBO) scoring  also showed that if the law is repealed it would add $109 billion to the deficit over 10 years.  While the $84 billion looks good, it’s actually due in large part to the prediction that approximately 3 million Americans won’t be eligible for the  Medicaid expansion in those states opting out.  Currently 13 states are cutting Medicaid benefits due to budget woes.  A former CBO director believes that the law won’t save any money and that it will in fact add $70-$82 billion to the deficit arguing that the CBO methodology was essentially flawed.  [NOTE:  The Society’s overall strategy on Medicaid expansion is being reviewed and a separate communication including additional resources will be sent to Chapter staff.  One external resource is the Webinar mentioned in the box below.]

Evidence-based research – a bad thing?  A U.S. House of Representatives subcommittee apparently thinks so because it voted to zero out funding for the Agency for Healthcare Research and Quality and the bill "prohibits any patient-centered outcomes research and all economic research within the National Institutes of Health".  AcademyHealth issued this statement/action alert.  (Note – it is extremely unlikely that provisions like this would make it through the Senate much less be signed into law.) 

Issue brief on status of health exchanges in 3 states.  The Commonwealth Fund this month issued a brief detailing the status of health exchange development in Colorado, California, and Maryland.

All you need to know about the ‘fiscal cliff’ (but didn’t know you needed to know).  The Washington Post has a really easy to understand piece on the various components (Bush tax cuts, payroll tax cut, ACA, ‘doc fix’, etc.) involved in the so-called fiscal cliff and the impact of certain scenarios on economic growth and/or deficit reduction or growth.

The number of uninsured – how big is 50.7 million?  The New York Times put out some comparisons to give perspective on the number of uninsured Americans.  For example, our uninsured population is 1.5 times the population of Canada, equal to the population of 25 American States, and roughly equal to the number of people who voted for George Bush in 2000.  See more here.

Will Sequestration really have an impact?  You be the judge – in a June 29, 2012 letter to Congressman Ed Markey, HHS says that the National Institutes of Health (NIH) may have to cut up to 2300 new and existing research project grants based on the overall 7.8% reduction in HHS budget should sequestration take place. 

Medicaid ‘Donut Hole’ on the horizon.  Given that Medicaid expansion is optional, states opting out of the expansion will leave millions of Americans in a new gap or hole because they would neither qualify for Medicaid in their states under current rules nor be eligible for subsidized private insurance in new state health exchanges.

Health Affairs webcast on ACAHealth Affairs recently hosted a daylong meeting that was also webcast and is now available online for viewing should you be interested.  key policymakers and analysts will examine the Supreme Court's decision and its implications for the implementation of health reform. Co-chaired by Donald Berwick and Mark McClellan, the conference explored the next steps in expanding coverage; the repercussions of the Court's decision for Medicaid expansion; plans for carrying out insurance reforms and setting up insurance exchanges; and ways to improve health and health care, while getting better value for the dollars we spend.

Just the Facts please.  Business Week produced a graphic highlighting the 54 bills Congress has sent the President, labeling the legislative branch the ‘do-a-lot-of-nothing-Congress’ – I’m not passing judgment, just relaying factual information!

‘Mini-Med’ warning.  Minnesota Commerce Commissioner Mike Rothman recently issued a warning to consumers about mini-med policies, what to watch out for, and how to tell if it’s legit.  This is likely a concern in the other states as well.  Read his press release.

The bill for Debt Ceiling fight.  Remember all the fighting last summer about the federal debt ceiling finally resulting in the ‘Budget Control Act’ and the infamous supercommittee?  Well, all that haranguing isn’t cheap:  the government racked up an additional $1.3 billion in borrowing costs while the White House and Congress duked it out.

Society Supports new Auto-Immune legislation.  New York Representatives Ann Marie Buerkle and Carolyn Maloney introduced legislation to create a federal, inter-departmental coordinating committee focused on auto-immune diseases.  In the ‘dear colleague’ circulated by Rep. Buerkle she discusses her sister living with MS and the bill is actually named after her sister.  The Society has emailed the Congressional MS Caucus urging that they co-sponsor the bill.

Senator Murray raises awareness of MS.  In a recent press conference discussing the debt, Senator Patty Murray (Wash.) talked of the struggles her family faced growing up because of the impact of her father’s MS.  Her stay-at-home Mom had to not only be the caregiver to 7 children, but not to her husband as well AND become the breadwinner. 

Flying with a Disability.  The Transportation Security Administration (TSA) has a new toll-free helpline number, 855-787-2227, to provide information for passengers with disabilities and medical conditions and their families before they fly. They recommend calling 72 hours in advance to learn what to expect at security checkpoints. They will also be able to coordinate your security screening ahead of time when they know about your disability.

Thursday, July 26, 2012


President George H.W. Bush signing the ADA
"I now lift my pen to sign this Americans with Disabilities Act and say: Let the shameful wall of exclusion finally come tumbling down.” –President George H.W. Bush

Twenty-two years ago today, on the South Lawn of the White House, President George H.W. Bush signed into law the Americans with Disabilities Act (ADA).  The ADA was a groundbreaking piece of legislation that passed through Congress with strong bipartisan support.  Not only was the ADA the first comprehensive disability rights legislation for the US, but it was also  the first comprehensive declaration of equality for people with disabilities around the world!

Karen Knable Jackson
The ADA set a clear and comprehensive national mandate to eliminate all discrimination against individuals with disabilities.  Have we succeeded? MS Activist Karen Knable Jackson says, “We’ve come a long way, but we need to keep growing. Curb cuts are fabulous.  But building access needs to be better. We need to have automatic plates to open doors on both entry doors and bathrooms.  We also need more ramps versus steps.”  As Karen notes, the ADA has provided a platform to increase opportunities, reduce barriers and change the perceptions of  Americans with disabilities in the community.  The principles of equality and inclusion imbedded in the ADA change the lives of Americans with disabilities. 

Since the original ADA was signed, improvements and clarifications have been made through additional legislation.  We need to keep working to ensure that the full promise of the ADA is implemented and continues to be expanded.  As Karen says, “We still have more to do. We need to keep improving on the great foundation we have. We still need to be advocating for ourselves and make people aware.” 

Twenty-two years ago the ADA was passed with the passionate determination of the disability community.  Today that community is still stronger than ever! 

Wednesday, July 25, 2012


Last week, Senator Patty Murray (WA) took to the microphone to give a voice to American families affected by MS and raise awareness for the disease.  While remarking on the American debt and fiscal climate, Senator Murray took a moment to remind Americans and federal lawmakers alike that federal policies have direct implications for all American families including those affected by MS facing unexpected costs. Senator Murray knows what this is like because MS is part of her family. 

When Senator Murray was 15 years old, her father—a World War II veteran—was diagnosed with MS.  After a few years, Senator Murray’s father’s MS progressed to the point where he was unable to continue to work.  Suddenly, her stay-at-home mother became not only the caregiver for seven children, but her husband’s caregiver, and the economic backbone of the family.  Suddenly, Senator Murray’s mother needed a job, training, and the means to put food on the table for her family.  Like many, Senator Murray’s mother needed help from federal programs such as food stamps (now the Supplemental Nutrition Assistance Program, SNAP) and Veteran’s Affairs (which helped with her father’s medical care). 

Senator Murray’s story is not uncommon.  But fortunately, for the MS community, Senator Murray is sharing her story, raising awareness about how MS affects the entire family, and urging policymakers to focus on those in need. 

Click here to watch Senator Murray’s full speech and hear her own story about living with MS.

Thank you, Senator Murray, for sharing your story and helping raise awareness for MS!

Tuesday, July 24, 2012


Donna Parisi
For the past seven years, Donna Parisi has been a resident of Preakness Health Care Center in New Jersey. More recently she has become not only a resident, but an advocate for the nursing home’s Medicaid patient community. Donna is a retired teacher with advanced Multiple Sclerosis who relies on a wheelchair and receives essential services through Medicaid.

Donna’s advocacy efforts began with her awareness about New Jersey’s intention to significantly alter its Medicaid program and move nursing home residents into private managed care. Traditionally, states have been reluctant to extend managed care to people with disabilities for various reasons including their complex needs. However, recently, largely due to constrained budgets and a desire to improve delivery and quality of care, some states like New Jersey are considering it. As this is being proposed and is happening, some including the Society want to make sure that the following types of things happen: care is not disrupted; care remain person-centered and based on personal choice; and people will disabilities maintain access to the wide range of services needed for their complex needs and access to qualified providers.

Determined to take action, Donna began investigating and discovered there were no citizen groups in New Jersey dedicated solely to advocating on behalf of nursing home residents. So, Donna stepped in and now tracks the news relating to her nursing home. 

Over the past two years Donna’s advocacy efforts have taken place inside Preakness and outside its doors. How does she do it? By creating momentum and giving her community a voice. Donna has gathered 11,000 electronic signatures on a petition, she asks any visitor at Preakness to sign the letter, works to enlist support from local politicians and citizens, encourages everyone to call or write President Obama and the U.S. Department of Health and Human Services (HHS) (the federal department that would approve or reject New Jersey’s application) to register their opposition, and attends freeholder meetings. Donna has had a letter to the editor published and was recently featured in an online article in Click here to read the article and learn more about Donna’s awesome advocacy efforts. 

Because of advocacy efforts such as Donna’s, New Jersey has delayed moving its 30,000 Medicaid nursing home residents into managed care. Initially intended to take effect July 1, 2012, New Jersey state officials are now aiming for January 2013 and may roll out the program slowly for a smoother transition. 

The Society applauds Donna for taking an issue that affects her personally and that she is passionate about and doing something about it. She has raised her voice, joined with others, and made a direct impact. That is what activism is all about. Thank you for your hard work as an MS Activist, Donna! Keep up the great work!

Monday, July 16, 2012


BREAKING:  The Convention on the Rights of Persons with Disabilities hearing was held yesterday and overall the hearing was very positive.  The Senate Foreign Relations Committee did not yet vote on whether to forward the treaty to the full Senate but we will let you know when that occurs.

Supreme Court Ruling.  Well by now everyone knows that the Supreme Court held that the Affordable Care Act was constitutional, with some surprising twists in that conservative Chief Justice John Roberts was the deciding vote in favor of constitutionality.  Another interesting twist was that the Court agreed that the individual mandate was unconstitutional under the Commerce Clause (which caused CNN and Fox to erroneously report that the law had fallen) but that it was constitutional under the Congressional authority to tax and spend, thereby deeming the mandate a ‘tax.’ 

Implications of Ruling.  The Commerce clause part of the Court decision could, according to some legal experts, re-define Congressional authority to regulate commerce and the Medicaid ruling (see below) could impact Congressional authority to alter state programs that are federally funded.  So while the law was upheld, analyst are now assessing some of the peripheral consequences of the Court’s logic.  Given the 5-4 decision, it’s clear that had the minority prevailed, it could have resulted in a tectonic shift of Congressional authority.  

Uncertainty removed.  Pretty much the entire health industry was treading gingerly on reform implementation awaiting the Supreme Court ruling.  Insurers, employers, and providers along with the biotech industry among them.

What’s Next for ACA?  The GOP plans to hold another vote in the House of Representatives to repeal the ACA, which will pass, but die in the Senate.  In the meantime, states and the federal government move full steam ahead to implement.  There will no doubt be additional lawsuits and other maneuvers but for now, everything moves ahead. 

Medicaid Expansion.  The one area the Court differed with the law was on the Medicaid expansion.  It upheld the right of Congress to incent state action with funding enticements but ruled that the federal government cannot punish states that opt out.  In other words, the carrot is okay, the stick is not

White House Fact Sheet.  Shortly after the ruling had sunk in the Administration sent out this fact sheet about health care.  If you want to find out where your state stands on implementation, check out this article.

Post-November elections.  Congress and the Administration will likely still have a lot of work to do after the election during a lame-duck session, focused primarily on the budget.  If the November election results in a Republican takeover of the Senate, and the House remains GOP, and Mr. Romney gets elected president, then the GOP strategy to repeal the ACA relies on the ‘budget reconciliation’ process whereby only a simple majority is necessary to pass the bill as opposed to all other legislation which is subject to a filibuster necessitating a 60 vote majority.  (Note:  the Democrats opted for this tactic when they passed the ACA originally so attempts to cry foul will fall on deaf ears).

How does health reform impact Members of Congress?  A little referenced provision of the Affordable Care Act directly impacts members of the House and Senate – currently after they retire they keep the health insurance they had as elected officials.  Under the new law, they lose that perk.  Read more here.

In other news.  The House voted, for the 33rd time, to repeal ‘Obamacare’ however as noted in this story the ‘replace’ proposal in the GOP phrase ‘repeal and replace’ has yet to be identified.  It was also recently revealed that ‘Morning Joe’ host, former Rep. Joe Scarborough, has a son who is taking advantage of Obamacare to stay on his father’s insurance rather than opt for that offered by his employer.  Same goes for a child of Massachusetts Sen. Scott Brown.

Newseum Headlines. The Newseum has collected hundreds of front pages of papers from around the world on reaction to the Supreme Court ruling.  It also has many other collections of headlines on other subjects like the 100th anniversary of the Titanic sinking.

CDMRP & new oral drug.  A new oral medication being developed for people with MS was funded in part by the Congressionally Directed Medical Research Program (CDMRP) which has long been a top priority for the National MS Society.  Currently the MS CDMRP is slated to receive $5 million for FY 2013 and we are working to ensure enactment of that level of funding.

FDA bill signed.  The House and Senate worked in a bi-partisan fashion to pass the reauthorization of the FDA user fee which has now been signed by the president.  This was a ‘must pass’ bill as it provides critical funding for the FDA. 

Monday, July 2, 2012


This year, after hard work from MS and coalition activists, Massachusetts may overturn a ban on prescription medication pharmaceutical assistance programs. Both the Massachusetts House and Senate have approved budget amendments that would permit the use of prescription medication pharmaceutical assistance programs (including the coupons that appear in magazine ads and online) in the state. The current ban forbids any rebates for health care purchases in Massachusetts. 

The compromise language included in the Fiscal Year 2013 (FY13) Budget would allow co-pay assistance programs for medications with no generic version. This compromise legislation can help patients afford increasing co-pays and co-insurance for brand name prescriptions. The high costs of MS medications can reduce compliance with medication regimes, increase health care costs and result in personal financial hardship. This legislation can help!

On June 28th, the Massachusetts House and Senate approved the FY13 budget and sent the budget to Governor Deval Patrick for his approval. Governor Patrick has 10 days to review and take action. If he approves the legislation, Massachusetts will become the 50th state to permit patient assistance programs such as this.

Congratulations to all of the MS activists and coalition activists who worked to get this legislation to Governor Patrick! This legislation is a perfect example of hos MS Activists are making a difference!