Reps. Adam Kinzinger (R-IL) and Bill Pascrell, Jr. (D-NJ) have joined U.S. Sens. Bill Cassidy, M.D. (R-LA) and Kirsten Gillibrand (D-NY) to reintroduce the Huntington’s Disease Parity Act, which will make Medicare coverage and Social Security Disability Insurance (SSDI) available to people with Huntington’s Disease immediately after qualifying for federal disability.
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, 41,000 Americans are known to have HD and an additional 200-250,000 children of a parent with Huntington’s disease have a 50 percent chance of inheriting the deadly gene from an affected parent.
“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 Our legislation will provide a targeted solution to fix an outdated system and help the tens of thousands of people across the United States battling this rare and fatal disease,” said Kinzinger. “I’m proud to once again introduce this legislation with my colleagues Representative Pascrell and Senators Cassidy and 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 devastating, rare, and terminal disease,” said Pascrell. “For sufferers and their loved ones, the physical and emotional toll is overwhelming. The current two-year waiting period for Medicare and the 5-month waiting period for SSDI for Huntington’s sufferers are unbearable and unnecessary gaps. Our bipartisan bill will slice through red tape to get care to victims faster. The burden of a Huntington’s diagnosis is difficult enough and government can do more to make their lives as comfortable as possible.”
“As a doctor, I’ve seen how Huntington’s Disease can affect a person and their family,” said Cassidy. “An over 30-year-old law is delaying many with this disease from receiving Medicare or disability benefits. This can impede their ability to receive care. By fixing an outdated law, we can bring hope to those living with Huntington’s Disease.”
“When someone is fighting Huntington’s Disease, the last thing they should have to think about is how they will afford care or who will support them during their battle against such a crippling diagnosis,” said Gillibrand.
“Current Medicare and other disability insurance programs take too long to get support for ailing patients,” said Gillibrand. “The Huntington’s Disease Parity Act would break through the red tape and ensure that everyone living with this disease has access to immediate and vital care. I urge my colleagues to pass this commonsense legislation and bring aid to those suffering from Huntington’s.”
“The HD Parity Act is a crucial bill that must be passed for Huntington’s disease families,” said Louise Vetter, president of the Huntington’s Disease Society of America. “Two years is too long for HD families to wait and we need our Members of Congress to follow the lead of Representatives Pascrell and Kinzinger and step up and support this bill.”
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