What is the HD Parity Act (HDPA)?

The HDPA is actually two bills that we are trying to get passed in Congress, one in the House and one in the Senate. These bills are HR 2050 and S 868, and the actual title of both is “Huntington’s Disease Disability Insurance Access Act of 2021.”

The HDPA bills would lead to expedited payment of Social Security Disability Insurance (SSDI) benefits and earlier eligibility for Medicare coverage for those with Huntington’s disease (HD).

Specifically, the bill eliminates the 5-month waiting period for SSDI benefits and the subsequent 24-month waiting period for Medicare coverage for individuals with HD. Under current law, individuals generally must wait at least five months after the onset of disability to begin receiving SSDI benefits and then an additional 2 years to become eligible for Medicare. During this time they can suffer economic losses and be deprived of vital care, which not only impacts the person living with HD, but their family, too.