[Congressional Record Volume 156, Number 79 (Monday, May 24, 2010)]
[Extensions of Remarks]
[Page E915]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




    HONORING THOSE LIVING WITH AND AFFECTED BY HUNTINGTON'S DISEASE

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                         HON. BRIAN P. BILBRAY

                             of california

                    in the house of representatives

                          Monday, May 24, 2010

  Mr. BILBRAY. Madam Speaker, today I rise to honor the thousands of 
Americans living with and affected by Huntington's disease. As you 
know, May is Huntington's disease awareness month. HD affects over 
250,000 Americans, 117,000 in my great state of California.
  According to the National Institutes of Health, NIH, ``Huntington's 
disease results from genetically programmed degeneration of brain 
cells, called neurons, in certain areas of the brain. This degeneration 
causes uncontrolled movements, loss of intellectual faculties, and 
emotional disturbance. HD is a familial disease, passed from parent to 
child through a mutation in the normal gene. Each child of an HD parent 
has a 50-50 chance of inheriting the HD gene. If a child does not 
inherit the HD gene, he or she will not develop the disease and cannot 
pass it to subsequent generations. A person who inherits the HD gene 
will sooner or later develop the disease. As a Cochair of the 
Congressional Biomedical Research Caucus, I urge my colleagues to 
support efforts by the NIH to eradicate this horrible condition.
  Not only are people with HD living with constant discomfort, they are 
also shortchanged when it comes to receiving social security disability 
benefits. Individuals living with HD are continually denied disability 
social security benefits because of outdated medical guidelines that 
require a 2-year waiting period before the accrual of benefits can 
begin. These fine Americans have paid into the system and they should 
have access to these benefits. For most people a 2-year wait is 
nothing, for patients suffering with HD it is a death sentence.
  In an effort to end this discrimination, I have joined with my 
colleague Bob Filner (D-CA) in sponsoring H.R. 678 The Huntington's 
Disease Parity Act of 2009. This legislation will revise the outdated 
social security benefit formula and allow people living with HD to 
begin receiving their benefits immediately.
  I would be remiss if I did not mention the yeoman's work of Mr. Allan 
Rappaport and Ms. Misty Oto. These wonderful, dedicated Americans are 
fighting hard every day to make sure one day HD is nothing more than a 
footnote in a medical school text book.
  Finally, I would like to thank the Huntington's Disease Society of 
America, HDSA. HDSA is a national, voluntary health organization 
dedicated to improving the lives of people with HD and their families. 
This wonderful group promotes and supports research and medical efforts 
to eradicate Huntington's disease as well assists families dealing with 
HD all the while educating the public and health professionals about 
this condition.
  Colleagues of the House of Representatives, I urge you to support 
H.R. 678 and work with me to end the discrimination of HD patients.

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