Surveillance Act Introduced

On Wednesday, July 20, 2011, the National Neurological Diseases Surveillance System Act (H.R. 2595) was introduced. Last Congress, it was introduced and known as the MS and Parkinson’s Disease Registries bill, but the legislation was broadened before it was passed by the House of Representatives to include all neurological diseases. If enacted, this legislation will bring us yet another step closer to a world free of MS. This bill would create a centralized data collection system at the Centers for Disease Control and Prevention (CDC) that will track and collect data about neurological diseases, including MS. 

Currently, no accurate estimates are available to help us better understand the complexities and intricacies of the MS population.
 
As a person living with MS, I was shocked to learn that the last national study of incidence and prevalence of MS was conducted 36 years ago - in 1975! Can you imagine trying to formulate an accurate hypothesis and conduct scientific studies with data almost four decades old? H.R. 2595 would fix this problem by aggregating all existing de-identified information in one central location for neurological diseases, and thus it will eliminate road blocks for researchers due to the lack of knowledge that inhibits their work.
Over the past forty years, technology like the MRI and other innovative tools have developed that allow doctors to diagnose MS better than ever before. With these advancements has come an increase in detection of MS yet we still don’t know answers to fairly simple questions like— how many people are currently living with MS in the US? Where do people with MS live? What ratio of people living with MS are women versus men? By structuring a centralized system to track important data, H.R. 2595 would enlighten researchers by answering these fundamental questions, helping them solve the puzzle of MS and discover better treatments and one day, a cure. With this increased knowledge both private and public research entities, like the National MS Society, the National Institutes of Health (NIH), and the Congressionally Directed Medical Research Program (CDMRP) can more precisely focus research efforts and ensure that limited research dollars are being maximized.

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!

Briefing on Capitol Hill

On Tuesday, July 12th the National MS Society hosted a briefing on Capitol Hill for members and Congressional staff focusing on the importance of MS research. Minneapolis neurologist Dr. Jonathan Calkwood gave a presentation on current MS research efforts and highlighted that since 1946 the National MS Society has invested over $725 Million dollars on research. During a Q & A period Dr. Calkwood talked extensively about the shortage of neurologists in general, but that the shortage for neurologists who specialize in MS is an even bigger problem. 

Congressional MS Caucus co-chairs, Missouri Congressman Russ Carnahan (MO-3) and Texas Congressman Michael Burgess, MD (TX-26), provided opening comments at the briefing. Ted Thompson, Vice President of Federal Government Relations, highlighted the Congressmen’s work noting that they are true legislative champions for people living with MS. Burgess and Carnahan were instrumental in the push for CDMRP funding.

Public Policy Office intern Channing Barker spoke at the briefing as well, providing the perspective of a young person living with MS and stressed how critical continued NIH and CDMRP research funding is for her and all people with MS.

To Join The Movement, click here!

  



Dr. Jonathan Calkwood shares the importance of MS Research 

Caucus Co-Chair Congressman Carnahan 

Caucus Co-Chain Congressman Burgess, MD.

Congresman Carnahan, Channing Barker, Congressman Burgess MD., and Carrie Lamb

Channing Barker shares her story of living with MS.



How Important is Your Neurologist?

When I can’t walk or am unusually clumsy, I call his office. When my body loses sensation due to lesions on my brain, he is my go-to guy. If my sight gets a little fuzzy from possible optic neuritis, I make an appointment. These situations are true for many people living with MS - calling their neurologist to get every new symptom checked out. Yet, this critical reaction may be forced to change in the future, as it is expected the number of neurologists who enter the MS field will decrease considerably. 

I have seen my neurologist twice in the last six months. A predicted shortage of neurologists could cause those vital appointments to come to a screeching halt for me and others like me. As the number of neurologists specializing in MS decreases, the number of people diagnosed with this dastardly disease continues to rise, ironically due to the advances in neurological diagnostic tools. The specialist's base of patients will grow, thus making it harder for patients to get a timely appointment. And with a disease like multiple sclerosis, time is of the essence for treatment of a relapse. 

This past year, the public policy office worked with Congressman Michael Grimm along with nine other original co-sponsors on the PATH Act- Improving Physician Access in Teaching Hospitals (H.R. 2224) to prevent a physician shortage in the United States. Congressman Grimm introduced the PATH Act in the middle of June. 

Now it’s your turn to take action for H.R. 2224! 

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!

Olmstead Anniversary

In June 1999, I was a ten-year old sweating it out in the fields of an Oklahoma summer. Little did I know what a Supreme Court decision that month would mean for my future. On June 22, 1999, the Supreme Court ruled “that under the Americans with Disabilities Act (ADA) unjustifiable institutionalization of a person with a disability who, with proper support, can live in the community is discrimination.” In its ruling, the Court said that” institutionalization severely limits the person's ability to interact with family and friends, to work and to make a life for him or herself.” (U.S. Department of Health and Human Services, Administration for Children and Families website)

For those of us who don’t remember, the Olmstead case was brought to court by two women from Georgia who were developmentally challenged. Even though the women, L.C. and E.W., were told by health professionals that they could be cared for in a community based program, they were receiving no such thing. Rather, L.C. and E.W. were receiving treatment at a state-run institution at Georgia Regional Hospital, Atlanta. L.C. filed a suit against the state alleging that it failed to place her in a community based program once her “treating professionals determined that such placement was appropriate.” (law.cornell.edu)

In the end, “the Supreme Court found that unjustified isolation is properly regarded as discrimination under the Americans with Disabilities Act, and required that the women be served “in the most integrated setting appropriate to [their] needs.””(Olmstead v. L.C., June 1999, p.6) In the Olmstead decision, the Supreme Court established specific conditions when community-based services were required for persons with disabilities: the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others. (Olmstead v. L.C., June 1999, p.1)” (http://www.hcbs.org/glossary.php#)

Now 22 years old and living with the diagnosis of multiple sclerosis (MS), I see the remarkable achievements made by those living with MS, mental illness, paralysis, etc. The Olmstead anniversary is one to remember the importance of community integration, celebrate the great strides made by people with disabilities, and strengthen rather than weaken important programs like Medicaid that support home and community-based care. Along with the Americans with Disabilities Act, the Olmstead case gives advocates like us hope that we will achieve more in the coming years for all with disabilities. Join the Movement!

President Barack Obama looks at a painting presented to him by artist Lois Curtis, center, during their meeting in the Oval Office, June 20, 2011. Joining them are, from left, Janet Hill and Jessica Long, from the Georgia Department of Labor, and Lee Sanders, of Briggs and Associates. (Official White House Photo by Pete Souza)

Photo from:

http://www.whitehouse.gov/blog/2011/06/22/olmstead-champion-meets-president

Channing Barker is the author of this blog post and is an intern in the Society's Public Policy Office in Washington, D.C. this summer. She was diagnosed with relapsing-remitting MS at 16 in 2006. Channing will finish up her last year at the University of Arkansas with a double major in political science and journalism. Be sure to follow our blog and learn all of the exciting opportunities Channing participates in this summer!

Act Today to Preserve Funding for MS Research

With your help over the past four years, we’ve been able to get $17 million dedicated to MS Research through the Defense Department’s Congressionally Directed Medical Research Programs (CDMRP) . This week the House of Representatives is scheduled to vote on the FY 2012 Defense Appropriations bill that includes an additional $3.8 million for MS Research. There may be efforts to reduce or completely eliminate CDMRP and lose the momentum of the cutting edge research underway. It is important that you act now to urge your Representative to continue funding for the CDMRPs! 

Emerging evidence indicates a potential link between combat service and an increased incidence of MS, with one study theorizing that exposure to neurotoxins could be an environmental trigger for MS. According to a 2003 study in the Annals of Neurology, 5,345 veterans that served in Vietnam and the first Gulf War were diagnosed with MS that was deemed "service-connected." MS research in the CDMRP helps scientists better understand the causes of MS and can help us discover a cure.

Contact your Representative today and remind them of the importance of maintaining these programs that could lead to better treatments for MS in the future!