[Congressional Record Volume 155, Number 17 (Wednesday, January 28, 2009)]
[Extensions of Remarks]
[Page E168]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        DISABILITY BENEFITS FOR PEOPLE WITH HUNTINGTON'S DISEASE

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                            HON. BOB FILNER

                             of california

                    in the house of representatives

                      Wednesday, January 28, 2009

  Mr. FILNER. Madam Speaker, I have introduced the Huntington's Disease 
Parity Act of 2009 (H.R. 678). The purpose of this bill is to improve 
Social Security Disability Benefits and Medicare coverage for people 
affected by Huntington's Disease.
  Huntington's Disease (HD), is a genetic neurodegenerative disease 
(like Alzheimer's) that causes total physical and mental deterioration 
over a 10 to 25 year period. Eventually, every person diagnosed with HD 
will lose the ability to live independently. It is a rare disease, 
affecting 30,000 Americans, while another 200,000 are considered ``at 
risk'' of inheriting it from an affected parent.
  Many people with HD who apply for Social Security disability benefits 
experience delays and denials due to the continued use of outdated and 
insufficient medical criteria. Often, by the time persons affected by 
HD are ``under review'' for SSA disability, many have already lost 
their employer-provided health insurance benefits. This legislation 
would address this problem by directing the Social Security 
Administration to revise its medical criteria for determining 
disability for people with HD.
  The legislation would also remove the two-year waiting period for 
people living with HD to receive Medicare benefits after receiving 
Social Security disability benefits. Eliminating this waiting period 
will ensure individuals will get crucial care they need 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 or Lou Gehrig's disease), another 
degenerative neurological condition similar to HD.

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