U.S. Senators Bill Cassidy, M.D. (R-LA) and Kirsten Gillibrand (D-NY) introduced legislation to help individuals with Huntington’s Disease (HD) have better access to Social Security Disability benefits and Medicare coverage.
The Huntington’s Disease Parity Act would direct the Social Security Administration (SSA) to revise its outdated medical criteria for determining who is eligible for disability benefits and waive the two-year Medicare wait period once an individual is disabled by HD.
“I’m a doctor, I’ve seen how Huntington’s Disease can affect a person and that person’s family,” said Dr. Cassidy. “When their symptoms decline, many are unable to work and are currently being pigeonholed to a 30-year-old law that is denying or delaying their ability to receive Medicare or disability benefits. This can delay their ability to receive care. By fixing an outdated law, we can help bring hope to those living with Huntington’s Disease and their families.”
“No New Yorker should ever have to fight through red tape or even go bankrupt while suffering from this horrible disease,” said Senator Gillibrand. “Anyone diagnosed with Huntington’s Disease deserves immediate care – not years or even decades later when it could be too late. We need to take this commonsense step to improve access to lifesaving care for people who need it.”
Currently, people with HD that apply for SSA disability are routinely denied or experience long delays due to outdated and inaccurate medical guidelines that only account for HD’s physical impairments. This legislation looks to revise the medial criteria for evaluating disability to include scientific data on the onset of debilitating symptoms of HD.
Also, if a person with HD is deemed eligible for disability, they are forced to wait two years to receive Medicare benefits. During this time, the cognitive, behavioral, and physical effects of HD continue to worsen – especially when the individual lacks access to consistent medical care. Congress has previously waived the two-year waiting period for people disabled by Lou Gehrig’s disease (ALS) and End Stage Renal Disease (ESRD). This legislation would waive that wait period for those with HD.