Friday, July 29, 2011

21st Anniversary of ADA

On Tuesday, July 26th, members of Congress and about 200 Americans gathered in the Dirksen Senate Building to celebrate the 21st anniversary of passage of the Americans with Disabilities Act (ADA). This wasn’t just a day to savor how far the ADA has brought our country, but to see how much further we have to go in the fight for equality. Health and Human Services Secretary Kathleen Sebelius commemorated the anniversary with words of encouragement for all that has been done since the implementation of the ADA 21 years ago. Secretary Sebelius also spoke on areas she sees for more progress, such as accessible taxis in all of D.C. and more support for caregivers including through the Lifespan Respite Care Program. 

President Obama through a Presidential Proclamation commemorating the anniversary stated: “Equal access, equal opportunity, and the freedom to make of our lives what we will are principles upon which our Nation was founded, and they continue to guide our efforts to perfect our Union. Together, we can ensure our country is not deprived of the full talents and contributions of the approximately 54 million Americans living with disabilities, and we will move forward with the work of providing pathways to opportunity to all of our people.” President Obama put into words what so many Americans felt on that day in July, 21 years ago. He went on, encouraging “Americans across our nation to celebrate the 21st anniversary of this civil rights law and the many contributions of individuals with disabilities.”

At the celebration, Senators Mark Pryor (AR), and Tom Harkin (IA) and House Minority Whip Steny Hoyer (MD-5) addressed the crowd--which was full of persons living with disabilities who know firsthand how the law has positively impacted their lives. These legislators—who were integral to the law’s passage—discussed the importance of this anniversary, with Congressman Hoyer admitting it is the victory of which he is most proud. I met with Senator Harkin last year at the 20th anniversary of the ADA. I cannot believe it has been a year since the celebration at the White House. That was a monumental experience for me, and for all of those who today—because of the ADA and its commitment to ensuring equal rights to all—do not face as many road blocks. Today I may not be in a wheel chair, I may not have any sort of obvious physical problems, but the ADA affects my life every day. In college, I am protected by the ADA. I invoke my rights whenever I have to take a test; because of my disease and its impact on me, I am allotted more time. I am also allowed a note taker to better help me study for exams. The ADA protects me when I have a relapse- my teachers cannot legally persecute me because of my disability. 

On the anniversary of the ADA, I collected a list of what differences were made because of this bill. In one hour, I counted over 30 resources made more accessible because of the ADA. To think of what life would be like today if handicapped accessible bathrooms, wheelchair ramps, automatic doors and hundreds of other installations were not around, is a life I try to not imagine. This country is a leader in declaring equality for all citizens—including those who live with disabilities. In joining the movement, you show your support in fighting for equality for all.

Senator Harkin looked back on the days before ADA and the differences the bill has made.

Congressman Hoyer spoke on the importance of the ADA and the road ahead for those with disabilities.

Friday, July 22, 2011

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!

Thursday, July 14, 2011

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.

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.

Friday, July 1, 2011

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. 

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!