Hearing on Huntington’s Appreciated, But Parity Act Is Priority

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by Mary Chapman |

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While the Huntington’s Disease Society of America (HDSA) is pleased a U.S. House of Representatives subcommittee recently held a key hearing that featured Huntington’s disease, it continues to call for passage of bipartisan parity legislation.

The House Energy and Commerce Subcommittee on Health hearing was focused at better understanding needs and challenges in the Huntington’s disease (HD) community relating to care and treatment.

“On behalf of families affected by Huntington’s disease, HDSA is grateful for the subcommittee’s attention to advancing meaningful treatments for these neurodegenerative diseases,” Louise Vetter, president and CEO of the HDSA, said in a press release. “From the high cost of medicine to the scarcity of clinically relevant endpoints, HD families face overwhelming challenges accessing care. Passage of the HD Parity Act is something Congress can do right now to help families like Kala’s.”

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Vetter was referring to Kala Booth, a Huntington’s patient and caregiver. She had been slated to testify about life with the disease, its impact on families, and the importance of improved access to healthcare benefits, which the Huntington’s Disease Parity Act (HR 2050, SB 868) would provide. Specifically, the legislation would waive for Huntington’s patients the two-year Medicare waiting period and the five-month wait for Social Security Disability Insurance (SSDI) benefits.

“Even though Huntington’s disease is on the Social Security Administration’s compassionate care list, HD families often spend years battling against an uninformed system that does not recognize or understand Huntington’s disease,” Booth stated in her written testimony. “This policy must be changed. Congress made an exception for patients with ALS and the same should be done for patients with HD.”

As with amyotrophic lateral sclerosis (ALS), the statutory goal of the SSDI waiting period is to allow time for temporary conditions to improve. Because no existing treatments impede the disorder’s progression, many patients die before they can qualify for benefits.

Scrapping the waiting period also likely would lessen the financial burden that comes with a Huntington’s diagnosis.

“Huntington’s is a dreadful disease that leaves a devastating impact,” said Rep. Bill Pascrell, D-NJ, one of the sponsors of the HD Parity Act, which was reintroduced in March. “The physical and emotional toll on victims and their families is enormous. They deserve all the support our government can provide them. Currently, the waiting periods for SSDI and Medicare coverage for Huntington’s sufferers is a cruelly unnecessary gap. Rep. [Adam] Kinzinger [R-Ill] and I continue to push for our bipartisan, bicameral fix to allow Huntington’s sufferers to get their care faster. For Americans facing this difficult diagnosis, we must make sure their lives are as comfortable as possible.”

Kinzinger, another HD Parity Act sponsor, added: “Individuals and families battling Huntington’s disease face an overwhelming number of unimaginable challenges. It’s critical that Congress ensures our policies make it easier for them to receive the care they need,” he said. “I’m happy to see this committee take a serious look at the barriers to care for individuals suffering with such horrible diseases like Huntington’s disease, and I hope we can finally deliver the stability and certainty these families deserve by passing the HD Parity Act.”

Huntington’s disease, which is thought to affect 41,000 U.S. residents, causes symptoms that often are described as akin to simultaneously having amyotrophic lateral sclerosis, Parkinson’s disease, and Alzheimer’s.