For Immediate Release
Contact: Christopher Cosentino, Director of Marketing & Communications
Phone: 212-242-1968 x229

Huntington’s Disease Community Scores Major Victory with Social Security Criteria

New York, NY (July 8, 2016) – The Huntington’s Disease Society of America (HDSA) and the Huntington’s disease (HD) community scored major victories in the new medical criteria for evaluating Huntington’s disease released by the US Social Security Administration (SSA). Huntington’s disease is a devastating hereditary, neurological disorder affecting approximately 30,000 Americans each year.

Previously, the SSA medical criteria for evaluating HD characterized HD primarily as a movement disorder, a narrow understanding of the disease disproven decades ago as the cognitive and behavioral aspects of the disease became better understood. The new criteria released July 1st now directly address both the functional cognitive and mental symptoms of the disease, including marked limitations in executive function, social interactions, concentration and self-control.

“After years of work to try and pass the HD Parity Act, HDSA and the HD Community have made a major and undeniable impact on the disability evaluation process for those with Huntington’s disease,” said Louise Vetter, CEO of HDSA. “Families with HD will have access to their SSA benefits more quickly because HD families advocated for these important changes. We are grateful to the SSA for listening to the needs of HD families, and this rule is a reminder of the incredible impact we can have when we work together as a community to remove barriers and demand access to care for our loved ones.”

Within the revised rules, the hard work of the HD community was clear, with the Social Security Administration noting that more than 35% of comments received for all neurological disorders affected by this new rule were from the HD community (more than 1,100 messages). SSA directly responded to comments by adopting functional criteria to evaluate the impact of HD on a person’s physical and mental abilities. In addition, SSA’s updated listing for HD now references the mental and cognitive impacts of the disease and how to best evaluate someone with HD who doesn’t yet display the physical symptoms of the disease. The final rule goes into effect September 29, 2016. Read the full revisions to medical criteria for evaluating neurological disorders HERE.

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 carrying the faulty gene that causes HD. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD 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 or call (800) 345-HDSA.