[Congressional Record Volume 155, Number 79 (Thursday, May 21, 2009)]
[House]
[Page H5986]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    HUNTINGTON'S DISEASE PARITY ACT

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentleman from California (Mr. Filner) is recognized for 5 minutes.
  Mr. FILNER. Madam Speaker, May is Huntington's Disease Awareness 
Month. I rise today with my colleague from San Diego, Congressman 
Bilbray, in support of the 250,000 Americans affected by or who are at 
risk for developing Huntington's disease.
  This disease is a degenerative brain disorder for which there is no 
effective treatment or cure. HD slowly diminishes the affected 
individual's ability to walk, think, talk, and to reason. Eventually, a 
person with HD becomes totally dependent upon others for care. Because 
it is a genetic disorder, Huntington's disease profoundly affects the 
lives of entire families--emotionally, socially and financially.
  Over the last few months, several families in our San Diego area 
affected by HD have contacted us about the constant struggles they 
face. For example, Misty Oto lost her mother several years ago to HD. 
Her 40-year-old brother is now showing signs of the disease. Misty is 
also at risk for developing the condition as are her children.
  If that weren't bad enough, Misty and her family and countless others 
affected by HD are unable to receive the medical treatment and care 
they need. People with Huntington's disease are continually denied 
disability Social Security benefits because of outdated medical 
guidelines. Once people with HD begin to receive disability benefits, 
they still must wait 2 years before they qualify for Medicare. As a 
result, thousands of families affected by HD are unable to receive the 
treatment and care they desperately need. Many wind up losing 
everything they own in simply trying to survive.
  That is why Congressman Bilbray and I have introduced H.R. 678, the 
Huntington's Disease Parity Act of 2009. The bill directs the Social 
Security Administration to revise its criteria for determining 
disability, thereby making it easier for people with Huntington's 
disease to collect disability benefits.
  Mr. Bilbray, I appreciate our joined support. I would yield to the 
gentleman.
  Mr. BILBRAY. Madam Speaker, it is an honor to join with my San Diegan 
colleague, Mr. Filner, in supporting H.R. 678. This is really one of 
those regulatory guidelines that doesn't work and that doesn't address 
the issue at hand. HD is one of those situations where the regulation 
is absolutely absurd and inhumane. The fact is that for most people 2 
years of waiting may not now be very much, but for those with HD it 
could be a death sentence.
  I am honored to join with my colleague in the movement to address 
this inequity and deficiency in our regulation. I am happy to see that 
there are going to be Members joining us in correcting this situation. 
I thank you, Congressman, for taking the lead on this.
  Again, I guess it's really important to show that community and 
citizen involvement does matter. I would like to point out, as my 
colleague did, that Alan Rappaport and Misty Oto have worked tirelessly 
at trying to address this issue. I urge my colleagues to join with me 
and with, most importantly, my chairman, Bob Filner, in sponsoring this 
bill. Hopefully, we'll be able to bring up H.R. 678 as soon as 
possible.
  Mr. FILNER. Reclaiming my time, I thank the gentleman from San Diego. 
When we were both in local government, we worked together on numerous 
issues in San Diego, and I'm so glad we are working together here in 
the Congress.
  As we said, there are two major parts of H.R. 678. Number one, the 
Social Security Administration must revise its criteria for determining 
disability to make it easier for people with Huntington's disease to 
collect their benefits. It also removes the 2-year waiting period 
between receiving Social Security disability payments and their 
Medicare benefits. This will allow HD patients to get the treatment 
they need at the onset of the disease, when it's most important.
  This is not without precedence, Madam Speaker. In 2000, the Centers 
for Medicaid and Medicare Services waived this waiting period for those 
suffering from ALS, amyotrophic lateral sclerosis, or Lou Gehrig's 
disease. Huntington's disease is tragic, but our bill, H.R. 678, will 
help those who suffer from this disease.
  We urge the support of our colleagues for this bill.

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