[Congressional Record (Bound Edition), Volume 157 (2011), Part 2]
[Extensions of Remarks]
[Page 2686]
[From the U.S. Government Publishing Office, www.gpo.gov]




        IMPROVE ACCESS TO MEDICARE AND SOCIAL SECURITY BENEFITS

                                 ______
                                 

                            HON. BOB FILNER

                             of california

                    in the house of representatives

                       Friday, February 18, 2011

  Mr. FILNER. Mr. Speaker, I recently introduced the Huntington's 
Disease Parity Act of 2011 (H.R. 718), which would direct the Social 
Security Administration (SSA) to revise outdated, medically inaccurate 
criteria for determining Social Security Disability and waive the 
Medicare two-year waiting period for people disabled by Huntington's 
Disease (HD).
  HD is a devastating, hereditary degenerative brain disorder that 
causes total physical and mental deterioration. Eventually, every 
person affected by HD becomes completely dependent on others for care. 
Today, 30,000 Americans are known to have HD and an additional 200,000 
have a fifty percent chance of inheriting the disease from an affected 
parent. The debilitating symptoms make it challenging, if not 
impossible, for the person with HD to remain employed, resulting in a 
loss of income and employer-sponsored health insurance benefits.


   Revise Outdated Criteria to Improve Access to Disability Benefits

  Due to the SSA's dependence on outdated medical guidelines, 
individuals experience long delays and multiple denials of critical 
Social Security benefits, forcing patients to wait years for benefits 
while HD's destructive cognitive, behavioral and physical symptoms rob 
the person of their ability to work and live independently. The HD 
Parity Act directs the Commissioner of SSA, in collaboration with the 
National Institutes of Health and HD experts, to update the agency's 
guidelines.


    Eliminate Medicare Waiting Period Rather than Accepting Impasse

  Access to critical health care is often denied in the early stages of 
disease due to an individual's inability to work, thereby causing the 
loss of their employer-based insurance. During the required Medicare 
two year waiting period, individuals with HD see their physical and 
mental health deteriorate rapidly necessitating more costly care later.
  Passing the Huntington's Disease Parity Act of 2011 will direct the 
SSA to revise the medically inaccurate criteria used to determine 
Social Security Disability and eliminate the Medicare two-year waiting 
period. These two critical reforms will directly impact the welfare and 
lives of individuals and their families impacted by this rare and 
devastating disease.