Huntington's Disease Parity Act of 2009

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 People with Huntington's disease are continually denied disability Social Security benefits because of outdated medical guidelines.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

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.

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.

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.

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.

Madam Speaker, I rise today to recognize the month of May as National Huntington's Disease Awareness month.

As some of you may know, Huntington's Disease is a genetic, neurodegenerative disease that causes total physical and mental deterioration over a 10 to 25 year period.

It is a rare disease, affecting 30,000 Americans and places another 200,000 at risk of inheriting it from an affected parent. Because it is a genetic disorder, Huntington's Disease profoundly affects the lives of entire families--emotionally, socially and financially.

This devastating disease has no treatment or cure and slowly diminishes an individual's ability to walk, talk, and to reason. Eventually, every person with Huntington's Disease becomes totally dependent upon others for care.

In my home State of California there are more than 117,000 individuals impacted by Huntington's Disease.

Last year, Congressman Bilbray and I introduced H.R. 678, the Huntington's Disease Parity Act of 2009.

This legislation does two things. First, it directs the Social Security Administration to revise and update the medical criteria for determining disability benefits for people with HD.

The second part of the legislation removes the 2-year waiting period before receiving Medicare benefits. This allows individuals to receive the treatment and care they desperately need.

In honor of National Huntington's Disease Awareness Month, I urge my fellow members of Congress to support H.R. 678 and help families across the Nation receive the critical benefits they need and deserve.