STATE SUCCESS: SOCIETY STATE ACTION DAYS FOCUS ON HIGH COST OF MS THERAPIES

MS Activists are at it again!  MS Activists from the Arizona and California visited their local senators and representatives to discuss important measures that impact people living with MS.  

This time, MS Activists focused on the high cost of MS therapies. The high cost of prescription drugs pose a serious challenge for being living with MS. While there is currently no cure for MS, there are eight MS therapies available to people with relapsing MS that can help reduce disease activity and slow the disease’s progression. Having access to these MS therapies makes a big difference for being living with MS, but the cost of these drugs can be a significant barrier. Drugs to help manage MS can exceed $30,000 per year or more than $800 per month out-of-pocket. That’s why the Society advocates for legislation that will help ease the burden of paying for prescription drugs. 

In Arizona, MS Activists advocated for Senate Bill 1401, which would cap out-of-pocket costs for designer medications. The critical message MS Activists delivered to their state lawmakers was that action needs to be taken to ensure people can offered disease modifying drugs. Click here to watch the news coverage and learn more about the bill. 

In California, Assembly Member Fiona Ma introduced a bill that would help people with chronic disease afford expensive prescription medication. MS Activists were involved by talking to their legislators about the importance of this bill to the MS community. Click here to watch the press conference in California. 

This is just one more example of how MS Activists are making a difference in their home states. Congratulations to all involved – this demonstrates tremendous state leadership on an issue vitally important to people with MS.

Urgent Action Needed! Ask Your Senators to Support Family Caregivers

Up to 25% of people living with multiple sclerosis (MS) will require long-term care services at some point. A recent National Alliance for Caregiving (NAC) survey of individuals supporting people living with MS shows that on average, caregivers spend 24 hours per week providing care. Caregivers enable people living with MS to remain at home and independent, and to avoid premature admission to more expensive institutional facilities. These are extremely positive benefits, but caregiving can be stressful and take its own toll. Sixty-four percent of caregivers surveyed were emotionally drained, 32% suffered from depression, 25% could not focus at work, and 22% have lost a job due to caregiving responsibilities. Sixty-six percent indicated that respite care—professional short-term help—would allow their care recipient to live at home longer.

The federal Lifespan Respite Care Program exists to better coordinate and deliver respite services to our nation’s more than 60 million family caregivers –including those caring for people with MS. Since the program’s start in 2006, it has been woefully underfunded. This year, Senators Robert P. Casey, Jr. (PA), Olympia Snowe (ME), and Richard Blumenthal (CT) have circulated a bipartisan “Dear Colleague letter” on Capitol Hill to help ensure that the Lifespan Respite Care Program receives adequate funding in Fiscal Year 2013. Click here to send an email to your U.S. Senators and ask them to sign on to this important letter. We only have two days to gather signatures for this letter, so be sure to email your Senators today!

FEDERAL FRIDAYS

(Happy) Anniversary to the ACA.  Well the health reform bill turned 2 years old today and while the benefits of the law are already apparent, many continue wondering why Obama & Co. have missed the ‘messaging opportunity.’  Meanwhile, oral arguments before the Supreme Court begin next week with unprecedented protests and other activities to highlight support or opposition to the ACA.  Legal experts are giving the ACA a ‘close win’ in the Supreme Court.  The question of whether the law truly impacts people’s lives is highlighted in this story about four individuals.

Strings Attached.  One of the challenges to the health law centers on Medicaid expansion and Congressional use of the purse strings to force states to take certain actions.  This is a longstanding practice of Congress, pursued in a bi-partisan fashion so a negative Court ruling on this piece would significantly alter the state-federal relationship.

MS Connection Launched!

The National MS Society recently launched its new social media platform at www.msconnection.org.Set up an account and connect with others having similar interest, including the `We Are Activist’ group.

Cost Still a Problem.  Regardless of hype and headlines, paying for care is still unaffordable for many.  AARP has a ‘price watch’ report on common prescription drugs that you may find of interest.  Here’s an analysis by the Commonwealth Fund on ‘bending the cost curve’ by encouraging more primary care.

Health Care Law & Women.  The U.S. Department of Health & Human Services has posted a blog about how the Affordable Care Act benefits women.  Read the blog here.

Independent Payment Advisory Board (IPAB).  The House has voted to repeal this provision of the ACA even after some support diminished due to the addition of medical liability reform to the bill.  Repeal in the Senate is questionable and it’s doubtful the President would sign the repeal.  This will likely be a campaign issue.

GOP Budget would Transform Medicare/Medicaid.  Budget Committee Chair Paul Ryan (R-WI) unveiled his budget proposal this week.  If enacted, his proposals would result in some fundamental changes to the two health programs.  The proposal passed the House Budget Committee by a 19-18 vote Wednesday.  Two GOP members voted No because the budget doesn’t cut enough.  The Society joined a letter sent by the Consortium of Citizens with Disabilities opposing the budget in part because it would block grant Medicaid among other problems.

Britain & France.  Did you know that U.S. spending on health care ($2.6 Trillion) eclipses the entire economy of Great Britain and France (not combined, individually)?  Pretty staggering bit of trivia.  Read about it at NPR.

World MS Day Blog.  A new blog has been launched about World MS Day which is this coming May.

White House Community Partnership Summits.  The White House is hosting a series of meetings, or Summits, around the country and they are open to the public so feel free to pass this along.  This provides a good opportunity to carry our concerns to the executive branch.  Upcoming summits:

• Orlando, FL – March 30 (Florida, South Carolina,   Georgia)
• Los Angeles, CA – April 26 (California, Nevada, Arizona)
• Denver, CO – April 30 (Colorado, Utah, New Mexico)
• Chicago, IL – May 11 (Illinois, Indiana, Wisconsin)
• Boston, MA – May 24 (Connecticut, Vermont, Maine, New Hampshire)
• Dallas, TX – June 22 (Texas, New Mexico, Oklahoma, Louisiana, Arkansas)
• Seattle, WA – June 29 (Washington, Oregon, Idaho)

GrandCare.  It’s not what you think – it has nothing to do with grandparents caring for grandkids or grandkids caring for grandparents.  It’s a new technology that allows people to live independently who otherwise would likely end up with institutionalized care.  Learn more here. 

Vets with MS.  Vets with MS tend to have more chronic illness than those without MS according to a CDC report.

Tobacco 2.0.  A new start-up company is heavily involved in use of tobacco plants making a wide variety of vaccines and proteins used in medical treatments.

That’s it for now.  Remember to follow us on Twitter at @MSActivist and use the hashtag #MSActivist in your messages, check out the blog at www.msactivist.org, and sign up for Action Alerts at www.nationalMSsociety.org/MSActivist.

MEMBERS OF THE U.S HOUSE OF REPRESENTATIVES SUPPORT THE MS COMMUNITY

As a direct result of MS Activists visiting Capitol Hill during the recent Public Policy Conference and over 1,300 emails sent to Capitol Hill, we achieved significant support for funding for MS research and for a federal program that supports family caregivers. Each year, as part of the federal budget process, MS activists weigh in and ask their members to support priorities for the MS community. As part of this, we ask our members of Congress to sign on to “Dear Colleague” letters which are sent to the House and Senate Appropriations Committees, recommending certain funding levels for various programs that help people affected by MS. The three Dear Colleague letters circulated in the U.S. House of Representatives that MS activists worked on support MS research funding in the Congressionally Directed Medical Research Programs (CDMRP), funding at the National Institutes of Health (NIH), and funding for the Lifespan Respite Care Program (LRCP). Our hard work paid off--many more members of Congress signed each letter than last year.

We are excited to announce that 68 bipartisan Representatives signed on to the letter supporting $10 million for MS research in the CDMRP by signing on to the Dear Colleague letter circulated by Rep. Russ Carnahan (MO-3) and Rep. Michael Burgess, MD (TX-26). The CDMRP funds high risk, high reward research that can help lead us to a better understanding of MS, better treatments and one day, a cure.

MS Caucus Co-Chairs and Leads of a Dear Colleague Letter Supporting MS Research in the CDMRP Reps. Carnahan (MO-3) and Burgess (TX-26) with Former Society Interns

Funding for the NIH was supported by 155 bipartisan Representatives in a Dear Colleague letter led by Rep. Edward Markey (MA-7) and Rep. Brian Bilbray (CA-50). The NIH is the country’s premier institution for medical research and in Fiscal Year 2011, supported $122 million of MS research.

Lastly, 33 Representatives supported $5 million for the Lifespan Respite Care Program in a Dear Colleague letter led by Rep. Jim Langevin (RI-2). The LRCP provides funding to states to establish or enhance statewide respite networks that support our nation’s 60 million family caregivers.

Rep. Langevin (RI-2), Lead of the Dear Colleague Letter Supporting the Lifespan Respite Care Program, Speaking at the Society’s 2011 PPC

Let’s show our appreciation to the Congressional champions who led these letters, as well as to all of the Representatives who signed on and by doing so, showed their support for people living with MS. Take a moment to call or write a thank you to your Representative if s/he signed on to any/all of the letters. Click here to see the full list of Representatives that supported our policy priorities.

Stay tuned to learn about and take action on similar Dear Colleague letters that will be circulated in the Senate!

SENATOR JERRY MORAN AND HIS STAFF SUPPORT MS AWARENESS WEEK

MS Activists from the Kansas visited with the office of Senator Jerry Moran. Last week, the office celebrated MS Awareness Week by wearing orange ties and scarves. We thank Senator Jerry Moran and his staff for caring and supporting the MS community.

MS ACTIVIST TELLS HER STORY ON CAPITOL HILL

Last Thursday, Arizona MS Activist Bonnie Danowski spoke at a Congressional briefing co-hosted by the Society and National Alliance for Caregiving, which released  new survey results about MS caregivers. Among other issues, the survey highlighted the financial, emotional and health challenges MS caregivers face. The survey also highlighted the need for greater caregiver supports, like respite programs. Did you know that approximately four in ten respondents report that providing care to someone with MS has negatively impacted their financial situation (43%), ability to participate in hobbies/things they enjoy(39%), and their mental health (38%).You can download the full report at www.caregiving.org. 

To give a first-hand account as a caregiver, Bonnie spoke about her experience as a caregiver for her husband that has had MS for 41 years. She passionately relayed the importance of respite for maintaining a system of home health care, stating, “If we caregivers fall apart, the whole system will crash”.  MS Congressional champions Rep. Jim Langevin and Rep. Russ Carnahan also stopped by to say a few words and lend support.  Both reiterated the importance of sustaining and growing the Lifespan Respite Care Program  through additional funding for the program.

MS ACTIVISTS TAKING ACTION AND MAKING A DIFFERENCE!

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

Although events of the 21st Annual National MS Society Public Policy Conference in Washington, DC, March 5-7, 2012 are complete, and MS activists have visited lawmakers on Capitol Hill. We must continue the conversation with legislators and recognize MS activism continues year-round. 

While activists can be on the frontline without traveling to DC, there is nothing quite like actually attending the Public Policy Conference. This was the first time I had been in the presence of so many MS activists (more than 325) since the last Walk MS I attended years ago in Reston, VA. The energy is indescribable. 

Political commentators explained the current political climate in DC in this election year. We learned more about family caregivers and the Lifespan Respite Care Act and the need for increase funding for MS Research. We learned about health exchanges and talked with inspiring MS activists who are working in their communities to raise MS awareness. In preparation for next year, I asked 6-time conference attendee, Sarah Keitt, for her recommendations for people who would like to get more involved on the local, state, and federal levels.

• Contact the Government Relations Committee at the National MS Society and tell them you are interested.
• Find your chapter.
• Get involved in your state advocacy efforts and work closely with your chapter.
• Find out what’s going on at your state capital and learn about the issues.
• Jump in and volunteer anywhere you can, contacting legislators or visiting district offices.
• Take advantage of virtual advocacy opportunities through blogging, twitter, or email campaigns.

Jessica, a legislative correspondent in the office of US Representative Jim Moran (VA-8), shared that the office may receive as many as 400 emails in a day. Each email and phone call is logged so that the interests and concerns of constituents in the district are documented. Every email, phone call, letter, and visit count! The more personal and less generic your message, the more likely it will stand out. 

One thing that came through last week is that activism is easy! And a couple of easy steps you can take right now are to follow @MSActivst on Twitter, sign up to receive blog posts and action alerts and connect with other activists.

Thank you to the National MS Society for hosting a wonderful conference. I look forward to seeing each of you there next year! 

MS ACTION ALERT

Last week, at the Society’s 21^st annual Public Policy Conference (PPC), over 325 MS activists from around the country visited over 365 offices on Capitol Hill to urge support for research funding and family caregivers. We need everyone's voice now to tell legislators how important these issues are for the MS community. With it being MS Awareness Week this week, there is no better time to educate and request our Members on Capitol Hill to support increased MS research and caregiving supports.

Congressional MS champions are circulating three separate “Dear Colleague” letters that recommend funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP), funding for the National Institutes of Health (NIH), and funding for the Lifespan Respite Care Program that supports our nation’s more than 60 million family caregivers, including those who care for people with MS. These letters will be sent to the Appropriations Committee that determines funding levels for these vital programs. We do not have a lot of time—the deadline for the NIH letter is Wednesday, March 14 and the deadline for the CDMRP and Lifespan Respite letters is this Friday, March 16—so be sure to take action today! 

  

Click here to email your Representative and urge him/her to sign on to the MS research in the CDMRP Dear Colleague letter circulated by Representatives Michael C. Burgess (TX-26) and Russ Carnahan (MO-3), the NIH funding letter circulated by Reps. Brian Bilbray (CA-50) and Edward Markey (MA-7), and the Lifespan Respite Dear Colleague letter circulated by Rep. Jim Langevin (RI-2).

FEDERAL FRIDAYS

Ted Thompson, JD

Vice President of Federal Government Relations

If you’d like to be added to the distribution list, please email msactivist@gmail.com.

2012 Public Policy Conference a Success.  Earlier this week over 320 MS Activists came together at the 21^st annual Public Policy Conference.  Attendees arrived to receive an overview of the climate in Washington DC by Al Eisele, founding editor of The Hill who has been in Washington for 40 years and provided some history for the group, and Jonathan Capehart, columnist for the Washington Post and frequent guest on MSNBC, who provided insight into the Tea Party & Occupy movements and the impact these groups are having.

Activists were briefed on the key issues (Research through the NIH and CDMRP; Lifespan Respite; MS Caucus/MS Awareness Week) we brought to Congress on Hill Day.  On Super Tuesday we were honored to have nationally known political science expert Larry Sabato of the University of Virginia give a luncheon speech, providing interesting insight into the GOP presidential nomination process (read Sabato’s latest Crystal Ball).  In 2008 Sabato predicted President Obama’s electoral college victory within 1 point, and accurately predicted his popular vote percentage. 

At the Tuesday dinner we were joined by motivational comedian Brett Leake who lives with muscular dystrophy – Brett was funny, inspirational, and motivational.  On Friday we had a kick-off program in the morning and over 300 activists, armed with information and dressed in orange ties and scarves, and went to House and Senate offices holding over 300 meetings with Members and their staffs.  The Public Policy Office staff thank everyone who participated either as an activist, a speaker, a volunteer, or in any other way!

Award Recipients.  Each year the National MS Society names a Governor of the Year, U.S. Senator of the Year, and U.S. Representative of the Year.  Senator Mike Johanns (R-NE) was named Senator of the Year for his leadership in promoting funding for the Congressionally Directed Medical Research Program for MS, helping secure $3.8 million in FY 2012.  Representative Barbara Lee (D-CA) is a longtime MS champion and not only introduces the MS Awareness Week resolution in the House each year, but she also authors the Adult Day Program legislation (one of our 2011 priorities) and always keeps people affected by MS in mind as she pursues policy objectives.  Governor Mark Dayton (D-MN) was named Governor of the Year because of his unwavering opposition to state legislation that would have resulted in a ban of embryonic stem cell research and crippled research efforts in the state, and harmed the growing bioscience industry.  As one of his first acts he authorized early enrollment in the Medicaid expansion under the Affordable Care Act, thereby expanding health coverage to an additional 95,000 Minnesotans.  Todd Adams, Legislative Director to Rep. Jim Langevin, was named Congressional Staff Person of the Year for his tireless work on behalf of people with disabilities and chronic illness.  He has been an MS Champion, just like his boss!

Newest MS Caucus Members.  So far we’ve added nearly a dozen new members to the Congressional MS Caucus – if one of your Members of Congress is on the list, send an email to say thanks and/or tweet your thanks to his/her Twitter handle.  The new members are:  Rep. Jesse Jackson, Jr. (IL-2), Rep. Pete Olson (TX-22), Rep. John Olver (MA-1), Representative Steve Stivers (R-OH), Rep. Dennis Ross (R-FL), Rep. Brett Guthrie (KY-02), Rep. Bob Turner (R-NY), Rep. Bill Cassidy, MD (R-LA), Rep. Steve Chabot (R-OH), Rep. Lynn Jenkins (R-KS), Rep. Robert Hurt (R-VA) – (he asked for the MS tie after agreeing!), and Rep. Paul Tonko (D-NY).  [The MS Society ties were a hit with one Congressman asking for enough so his entire staff can wear during MS Awareness Week next week!]

Leverage the work of MS Activists.  Visits to the Hill this week by activists were a huge success.  I joined the Illinois delegation and met with Assistant Senate Majority Leader Dick Durbin (D-IL) in his U.S. Capitol office where he firmly committed to research funding and respite care and asked for our help to get people to understand the impact of budget cuts on research.  Keep the momentum going and leverage the work of these activists by clicking here and sending your own message about our federal policy priorities!  Move to the Frontline!

Social Media.  We tweeted from PPC for the first time and used the hashtag #MSActivist so if you want to know how the conference flowed, just check the hashtag and you’ll get a real sense of it.  Also, we have simplified our blog address, making it something you can remember rather than have to look for – www.msactivist.org is the new address for the blog.  We have several stories from the conference about the sessions, interviews with activists like Navy veteran Donnie Horner who helped kick off the Day on the Hill, and other information.  Check it out and let us know what you think!

That’s it from DC – for all of those who joined us in DC, thank you – it was a wonderful conference.  And remember this weekend is daylight savings time where we lose an hour.  But that’s okay, the 320+ activists gave hundreds of hours with Congress, advancing the issues so important to people impacted by MS and truly helps our office leap-frog ahead!  We’ve had quite a bit of follow up to do in the past couple of days which is terrific!

The next Federal Fridays will come out after St. Patrick’s day so I thought I’d leave you with this statistic from Mary Woolley of Research!America:  Americans will spend $4.14 Billion on St. Patrick’s Day . . . that’s enough to fund MS research at NIH for over 25 years – something to think about when you’re having your morning coffee!