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Congress must pass the Huntington’s Disease Disability Insurance Access Act

For people living with HD, accessing Medicare, SSDI should not be another burden

Our legislation would help those who have Huntington’s disease get the support they need, Gillibrand, Cassidy, Pascrell and Kinzinger write.
Our legislation would help those who have Huntington’s disease get the support they need, Gillibrand, Cassidy, Pascrell and Kinzinger write. (Bill Clark/CQ Roll Call file photo)

When Kala Booth from the Commonwealth of Kentucky testified before Congress this summer, elected officials from across the political spectrum took notice.

Kala had the grace and courage to share her story about living with Huntington’s disease, or HD, a rare, fatal genetic disorder. For many, it was the first time they had heard of HD, and we think it is safe to say they were moved by Kala’s poise and perseverance in the face of such a devastating diagnosis. 

Science did not always have a diagnosis for HD. While science now knows what causes HD, it does not yet know how to treat or cure it, and families like Kala’s still face too many hurdles to get the support they need. That is why we reintroduced the Huntington’s Disease Disability Insurance Access Act, which would help shoulder some of the burdens they face.

Multiple generations of Kala’s family have lived with HD, which is often described as a combination of ALS, Parkinson’s and Alzheimer’s all wrapped into one. She has watched it affect her grandfather and her mother, and has spoken about the realities of living with the disease while acting as a caregiver for her loved ones.

Kala’s experience is not rare. HD affects whole families and has a 50 percent chance of passing from parent to child. But the current system leaves those families without the care or options they need and deserve. Families like Kala’s often spend years battling with a system that fails to understand and recognize HD. She described the difficult and frustrating process of applying for disability coverage and spoke about how often families are forced to hire lawyers to help them navigate the process. Even when they are deemed eligible, they can be forced to wait another six months to get their Social Security Disability Insurance payments and up to two years for Medicare coverage. 

Our bill would change that. It would remove the waiting periods for Medicare and SSDI that individuals who have HD rely on as their disease progresses from disability to death.

We know this model works. Congress has already taken similar steps for people living with other diseases. In the past, we’ve waived both waiting periods for those who qualify for disability with other diagnoses. Let’s do the same for persons diagnosed with HD. The last thing someone fighting a serious disease or caring for an ailing loved one should have to think about is how they will afford care.

Tens of thousands of people across the United States are known to have HD, and as many as 250,000 children of a parent with HD face a 50 percent chance of inheriting the deadly gene. They should not be left to face this disease alone.

The Huntington’s Disease Disability Insurance Access Act was first introduced 13 long years ago. We have worked in various capacities during that time to raise awareness and urge our colleagues and leadership to support its passage. It’s time to act.

We call upon all of our colleagues, and committee and congressional leaders to help us advance this bill that costs so little but would do so much to support individuals and families living and dying with HD. It is Kala’s one request, and we hope we can work together to honor it. 

Sen. Kirsten Gillibrand is a Democrat representing the state of New York.

Sen. Bill Cassidy is a Republican representing the state of Louisiana.

Rep. Bill Pascrell Jr. is a Democrat representing New Jersey’s 9th District.

Rep. Adam Kinzinger is a Republican representing Illinois’ 16th District.

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