For Immediate Release
Contact: Christopher Cosentino
Director of Marketing & Communications
Phone: (212) 242-1968 x229
Email: ccosentino@hdsa.org
New York, NY (May 23, 2017) — Today, Congressman Adam Kinzinger (R-IL) and Congressman Bill Pascrell, Jr. (D-NJ) reintroduced the Huntington’s Disease Parity Act (HR. 2589) in the House of Representatives. Simultaneously, Senator Kirsten Gillibrand (D-NY), along with Senator Bill Cassidy (R-LA), reintroduced the legislation in the Senate (S. 1197). The Huntington’s Disease Parity Act is a bipartisan bill that ensures Medicare is made available to people with Huntington’s disease (HD) immediately upon qualification for disability. HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD and there is no cure. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.
“The Huntington’s Disease Parity Act is a vital piece of legislation for HD families because it waives the two-year waiting period for Medicare coverage for those affected by Huntington’s disease,” said Louise Vetter, President & Chief Executive Officer, Huntington’s Disease Society of America. “For a person with HD whose is facing the constant decline in cognitive, emotional and physical function, two years can mean living a going from a healthy lifestyle to being bed-ridden and needing 24/7 care.”
Ms. Vetter added, “It is essential that we close the two year gap between qualification for services and receipt of health coverage. The financial burden faced by families during these two years depletes their resources and often forces them to forgo necessary medicines and services while they struggle to keep food on the table.”
Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Congressmen Pascrell and Kinzinger are proud to lead this bipartisan effort and offered the following statements:
“Huntington’s Disease Parity Act is instrumental in providing necessary medical access to those impacted by Huntington’s disease. This bipartisan legislation is a targeted solution that will fix an outdated system for a very vulnerable group of people,” said Congressman Kinzinger.
“Individuals with Huntington’s disease confront profound challenges, facing emotional and financial obstacles in addition to the health struggles,” said Congressman Pascrell. “These individuals and their families deserve any relief we can provide as they deal with this devastating disease.”
To learn more about the Huntington’s Disease Parity Act please visit www.HDSA.org/TakeAction.
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About the Huntington’s Disease Society of America
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
