HUNTINGTON’S DISEASE SOCIETY OF AMERICA REINTRODUCES THE HUNTINGTON’S DISEASE PARITY ACT
New York, NY (March 19, 2021) – The Huntington’s Disease Society of America (HDSA) is thrilled to announce that Senators Kirsten Gillibrand (D-NY) and Dr. Bill Cassidy (R-LA), along with Representatives Adam Kinzinger (R-IL) and Bill Pascrell, Jr (D-NJ) have reintroduced the Huntington’s Disease Parity Act (S 868 / HR 2050). The HD Parity Act will waive the two-year Medicare waiting period, as well as waive the 5-month benefit waiting period for individuals with Huntington’s disease (HD) accessing Social Security Disability Insurance (SSDI). Medicare’s two-year waiting period is particularly devastating for people with HD. Once a person with HD is deemed eligible for SSDI benefits, a process which can take years even with Compassionate Allowance Listings, they are forced to wait two years to receive Medicare benefits. During the two-year wait, HD’s destructive impact cognitively and physically robs the person of their ability to live independently. Additionally, the genetic nature of the disease and its onset during prime working years has a tremendous financial impact on families with HD, forcing families to wait even five months to receive their financial benefit once they qualify for SSDI is too long.
“With the reintroduction of the HD Parity Act, we hope that Congress can work together to finally pass this bill that is so important to individuals and families suffering from Huntington’s disease,” said Louise Vetter, President & CEO of HDSA. “Like our friends in the ALS community, individuals with HD don’t have time to wait to access SSDI benefits when they need them most. With the passage of HR 1407/ S 578 in 2020, we know that Members of Congress understand the need to pass disease specific bills to fix disease specific problems.”
In 2020, our friends in the ALS community saw a bill pass that provided a waiver of the remaining 5-month benefit waiting period for folks with ALS accessing Social Security Disability Insurance (SSDI) (HR 1407/ S 578). The bill, passed under unanimous consent, provides immediate access to benefits for folks with ALS, relief HD patients do not yet have but so badly need. Our friends in the ALS community needed this disease specific solution to a disease specific problem. Now, it’s time for HD families to get the same. Like ALS, HD is a rare, fatal neurodegenerative disease that robs a person of their ability to walk, talk, and care for themselves. But unlike ALS, HD is genetic, and HD impacts a person’s cognitive abilities and functions. HD families get no reprieve from this disease, generation after generation. And it’s time HD families were exempt from these harmful waiting periods instituted into the SSDI program. Our families cannot afford to wait for help.
“The bottom line is that the HD Parity Act is a crucial bill that must be passed for Huntington’s disease families,” said Louise Vetter, President & CEO of HDSA. “Two years is too long for HD families and we need our representatives to step up and support this bill.”
To learn more about the HD Parity Act and to get involved in HDSA’s advocacy efforts please visit HDSA.org/takeaction. HDSA has recently launched a new Advocacy Caucus, a dedicated group of volunteer advocates from around the country supporting the HD Parity Act. To join HDSA’s Advocacy Caucus please visit HDSA.org/caucus.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA.
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