Huntingtons Disease SSDI Reform by sofiaie


The Honorable [Representative‟s Full Name] United States House of Representatives Washington D.C., 20515 Dear Representative [Representative‟s Last Name],

Thank you for this opportunity to discuss the need for legislation regarding how people with Huntington‟s Disease are deemed eligible for Social Security disability benefits and Medicare.

Our Goal To secure congressional support and co-sponsors for H.R. 678 that will improve access to disability benefits and medical care for individuals suffering from Huntington‟s Disease. Huntington’s Disease Huntington‟s Disease (HD) is a genetic neurodegenerative disease that affects 30,000 Americans while placing another 200,000 genetically „at risk‟ of inheriting the disease from an affected parent. HD causes total physical and mental deterioration over a 10 to 25 year period. Symptoms generally appear in midlife, although HD has been diagnosed in both children and the elderly. There is currently no cure for HD, and while medications may temporarily reduce the intensity of some symptoms, none halt the progression of the disease. Every person who inherits the defective gene will eventually become incapacitated by HD. The Problem While the SSA is working to reduce the current backlog of disability requests that affects people with HD, the number of delays and appeals will continue to rise until SSA physicians and caseworkers are given accurate medical information on which to base their eligibility decisions. The current neurological listings for disability have not been comprehensively revised in more than 20 years. Moreover, since Huntington‟s Disease is considered a rare disease, SSA caseworkers and physicians are generally unfamiliar with the complexity of symptoms. This combination of outdated listings and a lack of general understanding about HD causes delays and errant denials during the determination process. It is an inevitable fact that HD eventually renders every person affected by the disease unemployable. Often, by the time a disability application is “under review,” many applicants have already lost their jobs and their employer-provided health insurance benefits for themselves and often their families. This lack of insurance often results in insufficient treatment during the early stages of the disease and places enormous stress on the family caregiver and children.

The solution A complete and medically accurate description of HD would reduce the number of delays and reapplications of genuinely disabled individuals. Eliminating the 24-month Medicare Disability waiting period in the case of individuals with HD will also ensure that people with HD receive crucial care in the early stages of the disease. In 2000, the Centers for Medicaid and Medicare Services waived this waiting period requirement for people disabled by ALS (amyotrophic lateral sclerosis), a degenerative neurological condition similar to HD.
If access to Social Security disability benefits and Medicare is to improve for individuals with HD, strong congressional support and action is needed. Representative Bob Filner [D-CA) has introduced H.R. 678, To require the Commissioner of Social Security to revise the medical criteria for evaluating disability in a person diagnosed with Huntington’s Disease and to waive the 24month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease. It is our hope that you will advocate for the HD community in Congress by co-sponsoring this proposed legislation. In February of last year alone, 7000 people signed a petition on the HDSA national website in support of this congressional action. This is truly telling of the need for these changes. The Huntington‟s Disease Society of America will provide any documentation, testimony or other information that may be necessary or helpful in your review of this matter. Thank you again for your time and consideration.

Sincerely, [Your Signature, after printing]

[Your Typed Name]

Huntington’s Disease Society of America
Sean Luis Advocacy & Family Services Manager (800) 345-4372 x226 Joseph LaMountain Advocacy Consultant (202) 288-5124 Debra Lovecky Director of Education, Programs and Services (800) 345-4372 x228

Forty one years ago, Woody Guthrie lost his battle with Huntington‟s Disease. He was just 55 years old. While the world mourned the death of this legendary folk singer, little was known or understood about this devastating brain disease. Those affected by HD often were hidden away from the eyes of the community and families regarded the disorder with fear and shame. Woody himself spent much of the last 10 years of his life in and out of psychiatric wards where there was little personal care and no treatment for his symptoms. After his death in 1967, his widow, Marjorie, vowed that it was time to DO something about HD. She began locally by placing small ads asking families with the disease to contact her. From that first effort to reach out to HD families, the Committee to Combat Huntington‟s Disease, the predecessor of what is today the Huntington‟s Disease Society of America (HDSA), began. Marjorie Guthrie fought for almost 10 years to convince researchers, clinicians and federal funding agencies, that HD and other neurological diseases affected millions of Americans and should be studied. In 1977, Congress released a landmark report that included the very first recommendations for research and care which became the cornerstone of HDSA's commitment to the care and cure of HD. In the 31 years since, HDSA has grown from a handful of volunteers to a national network of more than 36 volunteer-based chapters and affiliates, 12 regions, more than 150 support groups and 21 major medical facilities that have received the designation as HDSA Centers of Excellence, all collaborating to fulfill the mission of the Society:    Promote and support research to find a cure for HD Help those affected by HD and their families and Educate the public and healthcare professionals about HD

Since 1997, HDSA has provided more than $20 million in funding to HD research through the prestigious HDSA Coalition for the Cure and HDSA Grants and Fellowship program. As a result, HD is now viewed as a “model” for other neurodegenerative diseases. Truly the answers we find for HD may well speed the development of therapies for other conditions. In our commitment to care, HDSA serves as a primary resource for HD families. Since 1998, HDSA has provided more than $8 million to fund the HDSA Center of Excellence program which offers a comprehensive array of medical care and social services for those affected by HD and their families. At the local level, HDSA chapters, affiliates, regions and support groups work to increase awareness about Huntington‟s Disease, raise funds for HDSA research, education and family service programs and enhance the image of HDSA in the community. HDSA is a national voluntary non-profit health agency dedicated to finding a cure for Huntington‟s Disease while improving the lives of those affected by the disease. The answers are within reach. With your continued help, we can offer help for today and hope for tomorrow.

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