Tuesday, April 23, 2013


MS Activists at the Rally
On Monday, April 8, thousands of advocates gathered in downtown Washington, D.C. at the Rally for Medical Research which aimed to make medical research a national priority. The National MS Society partnered with about 200 organizations to bring attention to decreased funding for the National Institutes of Health (NIH) in the past years and the effects of sequestration, or automatic spending cuts, which resulted in a $1.6 billion reduction to the NIH budget. The Society regards the NIH as an invaluable partner to finding a treatment for progressive MS, additional therapies for relapsing MS and a potential cure for the disease. Approximately $122 million of FY 2011 NIH appropriated funding was directed to MS-related research.

Journalist Cokie Roberts acted as “MC” for the event, which featured numerous political figures, scientists, researchers and patient advocates. Additionally, actress and breast cancer survivor Maura Tierney relayed her story about the impact of research on her life.MS Caucus Co-Chair Representative Chris Van Hollen (MD-8) was one of Members of Congress who attended. Representative Van Hollen, whose district houses the NIH, emphasized the national impact of medical research, remarking, “If we want to be a competitive nation, we need to invest in medical research.”

MS Caucus Co-Chair Rep. Van Hollen 

Thousands attended the Rally
Due to the large number of attendees and the speakers, the Rally received considerable media attention. Throughout the day, CNN and 30 news broadcasts reported on the Rally. In addition, the Rally was extremely popular on social media sites throughout the afternoon.  The Twitter hashtag #RallyMedRes was a top trending topic on Twitter globally, reaching more than 6,500 tweets from 11:00 A.M. to 12:30 P.M.  The National MS Society’s MS Activist Twitter account “live-tweeted” the event to spread the word to all of our activists through the social media website.

This was a great event and will help drive our advocacy work this year to ensure that Congress provides significant funding for medical research in Fiscal Year 2014!

The National MS Society's name appeared on the big screen!

Monday, April 22, 2013

This Week’s Events.  This edition comes on the heels of some horrific events in America and everyone at the National MS Society extends their heartfelt thoughts and prayers for everyone impacted by the bombing at the Boston Marathon and the massive explosion and devastation in West, Texas. 

Rally for Medical Research.  The National MS Society was a sponsor of a very successful rally in Washington earlier this month, calling on Congress to maintain investment in critical medical
research.  Cokie Roberts was the emcee and among the speakers was Congressional MS Caucus Co-Chair Chris Van Hollen (D-MD).

Obama Budget.  President Obama delivered his long-awaited budget to Congress last week and it includes many deficit-reduction measures which have certainly stirred things up in Washington.  Here’s an article highlighting its impact on health care, and another talking about impact on the pharmaceutical industry.

Simpson-Bowles 2.0.  Former Sen. Alan Simpson and former Clinton chief of staff Erskine Bowles just released a revised version of their deficit reduction plan. 

Sequestration.  The across the board spending cuts are beginning to have an impact, with more to come.  Here is a summary of impact on federal agencies.  Remember also that sequestration isn’t a one-time event.  Unless Congress acts, each of the next nine years will see the remaining cuts – on tap beginning October 1, 2013 is another $109 billion in automatic cuts.

Fiscal Gap:  $211 Trillion.  This is a term I recently read in this article suggesting that neither the deficit nor the debt are significant when you consider the fiscal ‘gap’ – the amount of financial commitments of the federal government minus the amount of revenue to pay for them in the coming years. 

Reconciliation after all?  In previous Federal Fridays I talked about the House and Senate having passed budget resolutions but that it was more for show than anything (and to get paid) however, unexpectedly, Senator Patty Murray and Congressman Paul Ryan announced their intention to have a conference committee and work to reconcile the very different budget resolutions.  The Administration is supportive of this as well.  Going to conference is what should happen next but recent history has shown a different path.  And while this sounds positive, there’s always more to the story as highlighted in this Washington Post article.

Doc Shortage Confirmed.  The American Academy of Neurology conducted a study to measure how significant the neurologist shortage is and just published the results.  The US could use 11 percent more neurologists to meet current needs. By 2025, that number will grow to 19 percent.  Another article specifically address the impact on MS.

Providers want faster payment system change.  Payment for treatment as a whole, rather than by fee-for-service, is the goal, and many providers want to move more quickly to that model of care/payment. 

Electronic Medical Records.  The Obama Administration is making another push, hoping to help streamline the process.

Cost of Health Care in Your State.  The Wall Street Journal put out a piece with a state by state breakdown of what health care costs.

Human Genome Project at 10.  It has been 10 years since this ambitious project was completed.  Here’s a piece about what it accomplished, and what comes next.

20 Best Small Towns to Visit.  Smithsonian Magazine published a list of their top 20 picks of small towns to visit.  Just another reminder of the richness we have within our borders.

Other ‘livable’ planets ID’d.  NASA has apparently located two planets that appear to be able to sustain life – interesting read!

MS Coalition Partner a finalistAccelerated Cures Project for MS, a member of the MS Coalition, has been named a finalist in the 2013 New England Innovation Awards – Congratulations!  Past winners include Staples, Ben & Jerry’s, Genzyme, Nantucket Nectars, and iRobot.

Health Reform Implementation News:

  •   “I don’t’ get it.” Two-thirds of Americans say they still don’t have enough information about healthcare reform to understand what they need to know or do.  Kaiser’s most recent public opinion poll highlights the need for more public education and outreach.  So, how what?  Keep reading to learn about plans for Consumer Assistance programs in the next section.   

  •   Who Does What? Consumer Assistance Takes Many Forms: There are  many different types of Consumer Assistance programs now being organized to help consumers learn about their health coverage options through the health insurance marketplaces (aka ‘exchanges’) starting in October.   But they are all a little different, so here’s a few basic distinction between Navigators and In-Person Assistance Programs from Enroll America to help keep them straight.  Since the feds issued their long-awaited plans for the navigator grant program for services in the 34 states that will either use the Federally-Facilitated Exchange (FFE) or a Federal Partnership Exchange, navigators and other types of consumer assistance have become a very hot topic. To learn more, check out this excellent video of a panel discussion among a group of experts.

  •   The Good News/Bad News on Out-of-Pocket Costs   We’ve been highlighting the ACA’s annual cap on total out-of-pocket caps as one of the more significant goodies for people with MS included in the Affordable Care Act.  The cap on annual out-of-pocket costs (deductibles and copayments, but not premiums), set to take effect in 2014, are roughly $6250 per year for individual coverage, and $12,500 for family coverage. But now that the regulations addressing them have been finalized, there’s both good news and bad news in the fine print.  We’re glad to know the cap applies to most employer-sponsored insurance plans too, but not so happy that some health plans that now have more than one administrator for different components of coverage, don’t have to comply with the rule until 2015.   The Society was among a number of advocacy groups that met with senior officials from the Department of Labor about it and followed up with a sign-on letter that made headlines in health policy circles last week.

  •   All Eyes on Arkansas:  Now that Arkansas’ legislators have opted for Medicaid Expansion through the “premium assistance” model, other states are wondering if relying on private health insurance policies for Medicaid beneficiaries is the way for them to go too.  (Society staff interested in learning more about Medicaid premium assistance programs should check out the additions to the Medicaid Expansion Resource Guide in Sharepoint.)

  •   Working Families to Benefit from Insurance Subsidies:  In a new Congressional Budget Office study including state-by-state breakdowns, working families will benefit the most from the Affordable Care Act’s premium subsidies. 

  •   Employer-Based Coverage Trends:  Amid fear and speculation about employers dropping health insurance benefits for their workers, employers in MA and some other states buck the trend. John McDonuogh tells us all about it.   

   Have a great week!

Thursday, April 11, 2013


Representatives Chris Van Hollen (MD-8) and Michael Burgess, M.D. (TX-26) circulated a “Dear Colleague” letter, a common tool used to generate support for programs, through the House of Representatives requesting $10 million for MS program within Congressionally Directed Medical Research Program (CDMRP).  We are happy to report that the letter received bipartisan support with 52 co-signers.

Please check the list and thank your representative if they signaled their support for MS research by co-signing this letter!


Thursday, April 4, 2013


As state legislatures and governors are exploring the option of Medicaid expansion, MS activists are getting involved in the legislative process to help educate legislators about the issue and voice their opinions.  Expanding Medicaid is a way to provide comprehensive, affordable health coverage to more Americans including people living with disabilities. If you would like to learn more about Medicaid, please see our post here.
McGaughy, Lauren. “State Rep. Patricia Haynes Smith, D-Baton Rouge, on the steps of the capitol in Baton Rouge.” NOLA.com|The Times-Picayune. 13 Mar 2013. [http://www.nola.com/politics/index.ssf/2013/03/medicaid_expansion_obamacare_l.html]

MS activists, like Crystal Smith, have been hard at work in their states’ capitals.  Smith testified on behalf of the Society at the joint Louisiana House and State Insurance Committees.  In Louisiana, the hearing lasted for more than five hours and Medicaid advocates filled the hearing room plus an overflow room to show their support.  Many advocates wore orange to show their support for the Society and people with MS. Smith’s and other activists’ hard work was mentioned in The Advocate, where the Society was recognized as an organization that supports expansion and gave testimony. Other states, such as Washington, are holding rallies with coalitions of like-minded patient advocacy groups to help increase awareness on shared priorities and our connections to public officials. 

State teams are sending out action alerts to gather stories to share with legislators and build the MS activist base.  State teams are also inviting public officials to WALK MS events to help promote issues that are important to those living with MS, such as Medicaid expansion. As Smith remarks, “Many more conversations will take place throughout the legislative session as many organizations are making the Medicaid Expansion top priority this year.”

As Medicaid expansion continues to be a hot topic for state legislatures, please consider contacting your local chapter to see how you can get involved!

If you would like to read The Advocate’s article that mentions the Society, please click here.

If you would like to read The Times Picayune's article that includes the picture above, please click here.

Tuesday, April 2, 2013


The end of March is here, Congress finalized FY 2013 spending plans, and Members of Congress are back in their states/districts for Easter break.  We are now focused on funding for core issues including NIH & CDMRP, FDA, and Lifespan Respite.  In this issue there is news around biosimilar development, the charitable deduction, Bob Dole’s take on the disability treaty fight, a bill introduced to deal with the doctor shortage and other issues.  At the end we have another Health Reform Implementation section. 

BG-12 ApprovedThe U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS. This makes the third oral therapy approved for relapsing MS, and the tenth disease-modifying treatment available in the U.S. Tecfidera is expected to be available by prescription within a few days.

Are you on Twitter?  If you are, be sure to follow us at @MSActivist!

FY 2013 is finally done.  The House and Senate passed another 6 month temporary spending bill, known as a CR (continuing resolution) that extends federal government funding through the end of the fiscal year.  It was signed by the president so FY 2013 battles are done.  Sequestration is still in effect however some agencies will see very modest increases in spending.  Outlined below are 4 programs of great interest to the Society:

· National Institutes of Health: A $71 million increase over FY2012 funding level

· Food and Drug Administration: A $9 million dollar increase over FY2012

· Congressionally Directed Medical Research Programs (CDMRP): The exact funding for the MS CDMRP is still unknown but is expected to be similar to FY2012 ($3.8 million)

· Lifespan Respite: We are awaiting final confirmation

Federal Budget Passed.  For the first time in four years the U.S. Senate passed a budget.  The House passed one too.  They did so in part to meet an April 15 deadline created by another bill that became law that said that whatever chamber fails to pass a budget will go without a paycheck until the end of the Congress (January 2015).  So the good news is that a budget passed.  The real news is that it doesn’t matter – the two Houses are unlikely to reconcile the bills and re-pass the budget since they are pretty irreconcilable, and it doesn’t matter because these are non-binding resolutions.  The effect of a budget that is passed and sent to the President is primarily to provide a framework or blueprint from which to work.  Meanwhile, the White House announced yesterday that it will release its budget on April 10.

Charitable Deduction Update.  There was some gamesmanship in the Senate last week with an amendment that would direct Congress to NOT alter the charitable deduction but it was incorporated into an amendment that would reduce the revenue raising provision of the resolution from $975 billion down to $483 billion, putting those Senators who support the charitable deduction in a bit of a bind.  It didn’t pass, and even if it did, budget resolutions are non-binding so the Senate could ignore the provision in a tax reform or appropriations cycle.  So for the time being, the charitable deduction remains.

Sequestration Impact.  Federal workforce furloughs are about to being and this Washington Post article highlights how uneven it will be.  Many agencies are furloughing employees one day a week for a set number of weeks, but the entire Department of Housing and Urban Development has chosen to simply shut down for 7 days due to the paperwork required to stagger its 9,000 employees.  And in addition to White House tours being cancelled, now the Blue Angels of the Navy have been grounded until further notice.

Up Next:  FY 2014!  Dear Colleagues are circulating in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program (CDMRP), $32 billion for the National Institutes of Health (NIH), and $2.5 million for Lifespan Respite.  The Society has notified members of the Congressional MS Caucus in the House and Senate and are working in coalition with other groups to advocate for these funding levels for FY 2014, and further communications have been sent to Society advocacy staff and activists asking them to contact their elected officials urging them to sign onto these letters and support the funding requests.  If you’ve received the alert, please take action

Doctor Shortage.  New York Representatives Michael Grimm and Joe Crowley along with NY Senator Chuck Schumer, Senate Majority Leader Harry Reid and Senator Bill Nelson of Florida introduced companion legislation to try and partially address the physician shortage problem in the U.S.  Their legislation, the Resident Physician Shortage Reduction Act of 2013, would increase the number of Medicare-supported hospital residency positions by 15,000, or 3,000 per year over five years. In touting the companion bills, lawmakers said current Medicare rules keep an outdated cap from 1997 on the number of resident doctors a hospital may train through government-backed graduate medical education (GME) funding.  The Society is seeking clarification as to whether this bill applies to specialties like neurology.

Disability Treaty – Bob Dole’s view.  Former GOP presidential nominee and Senate Majority Leader Bob Dole gave an in depth interview to the Boston Globe discussing his take on what has happened within the Republican Party culminating in the vote to not ratify the Convention on the Rights of Persons with Disabilities.  He highlighted that in his day, there was ‘The Pact’, that on disability issues, there wouldn’t be partisanship and political gamesmanship.  Clearly that is no longer the case.

America spends big bucks on Health Care.  In a new blog post and infographic, Commonwealth Fund senior research associate David Squires, M.A., estimates how much money the U.S. would have saved if we had spent only as much per person on health as Switzerland, the country with the second-most-expensive health system. He also considers what that money could buy if we had it today.

Savings with Biosimilars?  Biosimilars are not generics, and won’t see the level of savings seen with the introduction of generic pharmaceuticals.  Some people question whether there will be significant savings at all.

State Regulation of Biosimilars.  The Los Angeles Times had a recent editorial saying that states should keep hands-off biosimilars.

Drug/Device Approvals to Slow.  According to the FDA commissioner, the across the board spending cuts will have an impact on the speed with which the agency is able to provide approvals.

Health Reform Implementation News:

  •   Happy Birthday ACA!  March 23rd marked the third anniversary of the Affordable Care Act’s enactment.  Give yourself and pat on the back for whatever you’ve done to help, then view or share this  video of a reporters’ roundtable discussion about the status, and challenges of implementation.  It’s about 27 minutes long, but great for those who are prefer the  easy listening option at the end of a long day.   National Public Radio marked the ACA’s anniversary by highlighting the status of state implementation efforts in three very different states, as captured in short videos ( 1 – 2 mins) of reporters on the ground in  Florida, Minnesota and Colorado.   

  • Do Americans Understand the ACA?  According to a recent poll, there is still a lot of confusion over the health reform law.

  • What’s a Reg-u-la-palooza?   It’s a made-up word for the frenzy of activity going on at the federal agencies as they issue final regulations, official guidance documents and other really important stuff to implement the Affordable Care Act. In the last few weeks, five major regulations have been finalized, including one on the Essential Health Benefits and Cost-sharing Requirements. Read through this summary from our friends at the Georgetown Center for Health Insurance Reform.  If you really want to get wonky, sign up for their Blog Posts through the link toward the bottom of this page.

  • Could limits on the Essential Health Benefits discriminate? Some disability rights advocates think federal regulations regarding the Essential Health Benefits that new health plans must cover in 2014 and beyond will allow insurers to limit and exclude benefits  important to people with chronic illness and disability so much that they could be discriminatory.  In this Health Affairs blog post, Sara Rosenbaum and  Joel Teitelbaum look for reasons why people with MS and others should feel well protected by the new regulatory standards, and find little to be happy about.                                                                                                                                                                                                                                                                                                    

  • Life after 2014? Kaiser Family Foundation President and CEO Drew Altman responds to reporters’ questions, and even manages to take the longer view, in his latest ‘Pulling It Together’.

  • Speculation on Premiums: Up, Down, Somewhere in Between? There’s plenty of uncertainty about what impact the Affordable Care Act’s insurance reforms will have on health insurance premiums. A new analysis by the Society of Actuaries suggests some will see big increases, but others don’t agree. Secretary Sebelius concedes  that some individual policy holders are more likely to experience an increase in their premium, but others will pay less.  A recent report by The Urban Institute claims that fears of “rate shock” that some claim young adults will experience are exaggerated.  This Fact Sheet from Kaiser Family Foundation explains how and why premiums will change for individual (“non-group”) insurance policies.

  • Physicians’ Survey on the Affordable Care Act and the Future of Medical Care.  Consulting firm Deloitte periodically surveys US physicians for their take  on changes in, and challenges to the health care system.  Check out the highlight of their 2013 survey, or download the whole (15 p) report.  

  • Making It Look Easy Ever wonder how busy activists keep up with all the new ACA rules?  We have a few tricks, like reading every word written by certain gurus.  Here’s a string of blog posts (newest to oldest) by Washington & Lee Law Professor Tim Jost on ACA rules and policy decisions.   

  • Keeping Track of Medicaid Expansion Decisions – We’ve included it before, and we’ll include it again.  National Academy for State Health Policy’s tracking chart on states’ decisions and progress on Medicaid expansion is the tool to use.  It’s got data galore, history, Governor and Legislative branch activity, and links to key documents. Knock yourselves out!  

That’s it for now – as always, feedback is appreciated, including suggestions of other issues/subjects you would like to hear more about.  Have a good week!