Pascrell, Kinzinger Senators Introduce Huntington’s Disease Parity Act
Bipartisan legislation would help provide support for victims of dreadful illness
Washington, May 15, 2019
Today, U.S. Reps. Bill Pascrell, Jr. (D-NJ-09) and Adam Kinzinger (R-IL-16) and Sens. Bill Cassidy (R-LA) and Kirsten Gillibrand (D-NY) reintroduced the Huntington’s Disease Parity Act, which would ensure Medicare coverage is made available to people with Huntington’s Disease immediately after qualifying for Social Security Disability Insurance. Huntington’s is a hereditary nervous system disorder that causes total physical and mental deterioration. This degenerative disease affects tens of thousands of people across the United States, with more than 200,000 Americans at risk today. Today, 30,000 Americans are known to have HD and an additional 200-250,000 children of a parent with Huntington’s disease have a fifty percent chance of inheriting the deadly gene from an affected parent.
“Huntington’s is a dreadful disease and its impact is devastating,” said Rep. Pascrell. “The physical and emotional toll on victims and their families is total, and they need all the support that can be mustered. Currently, the two-year waiting period for Medicare coverage for Huntington’s sufferers is a brutal and unnecessary gap. Our legislation will allow Americans suffering from Huntington’s to obtain care more quickly. For those dealing with this difficult diagnosis, we need to make sure their lives are comfortable as possible.”
“The Huntington’s Disease Parity Act is critical to providing the necessary medical access to those affected by this devastating disease. Our legislation will provide a targeted solution to fix an outdated system and help the tens of thousands of people across the United States battling this rare and fatal disease,” said Rep. Kinzinger. “I’m incredibly proud to once again introduce this legislation with my colleague Rep. Pascrell, and our Senate colleagues, Sen. Cassidy and Sen. Gillibrand. It’s time we get this across the finish line, to help families with HD get the care they need.”
“As a doc, I know treating a patient in early stages of disease is critical to good outcomes,” said Sen. Cassidy. “Making patients wait two years for treatment through Medicare puts their health at risk and increases the cost of their care. This legislation ensures patients receive the care they need at the most crucial point in their diagnosis.”
“Anyone diagnosed with Huntington’s Disease deserves immediate care, and they shouldn’t be forced to fight through red tape or go bankrupt while battling with this horrible disease,” said Sen. Gillibrand. “This bill takes the commonsense step to improve access to lifesaving care for people who need it right away, and I urge my colleagues to pass this legislation.”
“The Huntington’s Disease Parity Act is a crucial bill to improve the lives of everyone affected by HD and their families. Right now, HD families must wait two years to access Medicare benefits after being qualified as disabled. In two years with HD, an individual can go from being functional to completely bed-ridden and under 24-hour care. This is unacceptable and the bill MUST be passed,” said Louis Vetter, President and CEO of the Huntington’s Disease Society of America, an organization which raises awareness about the disease and advocates for greater research into brain cells.
The Huntington’s Disease Parity Act has 55 original cosponsors in the House. This strong showing of support is made even more impactful this month as the Huntington’s community recognizes May as Huntington’s Disease Awareness Month. Leading that effort is the Huntington’s Disease Society of America.