Two Years is Too Long a Wait for Huntington’s Patients

May 18, 2021

For people living with Huntington’s disease, there may be help on the horizon as Congress looks to speed access to federal insurance coverage.

The change, which would waive long waiting periods for Medicare and Social Security Disability Insurance, was proposed as part of the Huntington’s Disease Parity Act. Senators Kirsten Gillibrand (D-NY) and Bill Cassidy (R-La.), along with Representatives Adam Kinzinger (R-Ill.) and Bill Pascrell, Jr (D-NJ), reintroduced the legislation in March, thanks in part to the continued advocacy from the Huntington’s community.

Huntington’s disease is a serious and progressive movement disorder that can cause jerking or uncontrollable movement of the limbs, trunk and face. One may also lose the ability to think clearly. Speech, physical and occupational therapy can help patients retain the muscle control and mental fitness to prolong full, independent lives. Without proper treatment for their symptoms, however, patients are left struggling to cope with uncontrolled movements and cognitive decline. People living with Huntington’s also frequently develop psychiatric problems over time.

The waivers proposed by Congress are important because they’d allow early, more immediate coverage for those who might not otherwise qualify for Medicare. Huntington’s symptoms usually first appear between the ages of 30 and 50, well before the 65 years of age generally required for Medicare coverage. The waiver would also eliminate the waiting periods that Huntington’s disease patients might otherwise face – two years for Medicare and five months for Social Security Disability Insurance.

Expediting access to federal insurance coverage is not unprecedented. In 2020, Congress updated the law to allow people with ALS, known as Lou Gehrig’s disease, to bypass the waiting periods. This record gives hope to people with Huntington’s, which has been described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.

About Huntington’s Disease

Huntington’s is a rare disease, affecting just 30,000 Americans. The hereditary condition destroys neurons in areas of the brain that control movement, intellect and emotions.

While there’s no cure, an international initiative is underway to develop stem cell therapeutics. The goal is to develop methods of replacing or supporting damaged brain cells.

Ensuring that people living with Huntington’s have access to care while waiting for a cure is crucial. There’s no better time than May – Huntington’s Disease Awareness Month – for members of Congress to extend their support to legislation that will improve the lives of people living with the debilitating condition.

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