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Congressmen Kinzinger & Pascrell and Senators Cassidy & Gillibrand Introduce 'Huntington’s Disease Parity Act'

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Washington, May 15, 2019 | Maura Gillespie (202-225-3635) | comments
Today, Congressmen Adam Kinzinger (R-IL) and Bill Pascrell, Jr. (D-NJ), along with Senators Bill Cassidy (R-LA) and Kirsten Gillibrand (D-NY), reintroduced the Huntington’s Disease Parity Act.
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WASHINGTON, DC – Today, Congressmen Adam Kinzinger (R-IL) and Bill Pascrell, Jr. (D-NJ), along with Senators Bill Cassidy (R-LA) and Kirsten Gillibrand (D-NY), reintroduced the Huntington’s Disease Parity Act, which would ensure Medicare is made available to people with Huntington’s Disease (HD) immediately after qualifying for disability. HD is a fatal hereditary disorder that causes total physical and mental deterioration, specifically affecting the brain. This degenerative disease affects tens of thousands of people across the United States, with more than 200,000 Americans at risk today.

Upon introducing this bipartisan, bicameral legislation, the co-leads in the House and Senate released the following statements:

“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 Our legislation will provide a targeted solution to fix an outdated system and help the tens of thousands of people across the United States battling this rare and fatal disease,” said Congressman Kinzinger.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.”

Huntington’s is a dreadful disease and its impact is devastating,” said Congressman 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 as quickly as possible. For those dealing with this difficult diagnosis, we need to make sure their lives are comfortable as possible.”

As a doc, I know treating a patient in early stages of disease is critical to good outcomes,” said Senator 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 Senator 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 HD Parity Act, H.R. 2770, garnered 53 original cosponsors in the House. This strong showing of support is made even more impactful this month as the HD community recognizes May as HD Awareness Month. Leading that effort is the Huntington’s Disease Society of America (HDSA). By raising awareness about the disease and advocating for greater research into brain cells, the HSDA has been a strong supporter of the HD Parity Act, and released this statement following today’s introduction:  

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 Louise Vetter, President and CEO of the Huntington’s Disease Society of America.

The full text of H.R. 2270, the HD Parity Act can be found below as a PDF. 

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