HDSA Applauds E&C Subcommittee for Highlighting Burden of Huntington’s Disease, Reiterates Call to Pass Bipartisan HD Parity Act

HD Patient Kala Booth Urges Passage of HD Parity Act to Fix “Broken System” for HD Patients.

Washington, DC (July 29, 2021) – The Huntington’s Disease Society of America (HDSA) applauds the House Energy and Commerce Subcommittee on Health for holding a vitally important hearing today that will spotlight Huntington’s disease (HD) — a rare, inherited, neurodegenerative disease whose patients are uniquely disenfranchised by the current health care system. 

Kala Booth, an HD patient and caregiver, will testify to the distinct challenges of living with HD, its multi-generational impact, and the importance of improving access to vital health benefits as outlined in the bipartisan Huntington’s Disease Parity Act (H.R. 2050, S. 868). The HD Parity Act will waive the two-year Medicare waiting period, as well as waive the five-month benefit waiting period for individuals with Huntington’s disease (HD) accessing Social Security Disability Insurance (SSDI).  

“Even though Huntington’s Disease is on the Social Security Administration’s compassionate care list, HD families often spend years battling against an uninformed system that does not recognize or understand Huntington’s Disease,” says Booth in her written testimony. “This policy must be changed. Congress made an exception for patients with ALS and the same should be done for patients with HD.”

“On behalf of families affected by Huntington’s disease, HDSA is grateful for the Subcommittee’s attention to advancing meaningful treatments for these neurodegenerative diseases,” said Louise Vetter, President & CEO of the Huntington’s Disease Society of America.  “From the high cost of medicine to the scarcity of clinically relevant endpoints, HD families face overwhelming challenges accessing care.  Passage of the HD Parity Act is something Congress can do right now to help families like Kala’s.”

“Huntington’s is a dreadful disease that leaves a devastating impact,” said Rep. Bill Pascrell. “The physical and emotional toll on victims and their families is enormous. They deserve all the support our government can provide them. Currently, the waiting periods for SSDI and Medicare coverage for Huntington’s sufferers is a cruelly unnecessary gap. Rep. Kinzinger and I continue to push our bipartisan, bicameral fix to allow Huntington’s sufferers to get their care faster. For Americans facing this difficult diagnosis, we must make sure their lives as comfortable as possible.”

“Individuals and families battling Huntington’s Disease face an overwhelming number of unimaginable challenges. It’s critical that Congress ensures our policies make it easier for them to receive the care they need,” said Congressman Adam Kinzinger. “I’m happy to see this Committee take a serious look at the barriers to care for individuals suffering with such horrible diseases like Huntington’s Disease, and I hope we can finally deliver the stability and certainty these families deserve by passing the HD Parity Act.”

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 and hope for tomorrow for people with HD and their families. HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.

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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Chris Cosentino, HDSA’s Director of Marketing & Communications

(212) 242-1968 x229