Huntington's Disease Parity Act

Floor Speech

HUNTINGTON'S DISEASE PARITY ACT -- (House of Representatives - May 21, 2009)

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 People with Huntington's disease are continually denied disability Social Security benefits because of outdated medical guidelines.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.

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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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