Press Releases

On Wednesday, Congressman Bill Huizenga (MI-02) joined more than 100 of his colleagues in supporting H.R. 842, The Huntington’s Disease Parity Act. Currently, thousands of Americans are facing unwarranted and unjust delays due to the medically inaccurate disability guidelines used by Social Security and the two year waiting period for Medicare. This bipartisan legislation improves access to Social Security and Medicare for Americans battling Huntington’s disease (HD).

“Huntington’s disease is a terrible illness that has a devastating impact on families in West Michigan and across the nation,” said Huizenga. “Making sure those affected by Huntington’s disease have access to Social Security and Medicare before the illness has taken its toll, both mentally and physically, is precisely the way these safety nets were intended to be used.”

“The entire HD community is thankful for Congressman Huizenga’s support of the Huntington’s Disease Parity Act and looks forward to working with him to promote this important legislation,” said Louise Vetter, CEO of HDSA.

Background on H.R. 842:

Total mental and physical deterioration in prime-working years make it challenging for a person with Huntington’s disease to remain employed, devastating them financially and delaying access to necessary medical care. Due to the debilitating symptoms, every individual with HD will eventually become completely dependent on others for care. Today, 30,000 Americans are known to have HD and an additional 200,000-250,000 children of a parent with Huntington’s disease have a 50% chance of inheriting the deadly gene from an affected parent.

The Huntington’s Disease Parity Act directs the Social Security Administration (SSA) to revise outdated, medically inaccurate criteria for determining Social Security Disability and waives the Medicare two-year waiting period for people disabled by Huntington’s disease.

H.R. 842 was introduced by Adam Kinzinger (R-IL) and Bill Pascrell (D-NJ).