Community Statement from Louise Vetter, HDSA’s President & CEO
FY23 Omnibus Appropriations Package Fails HD Families
New York, NY, December 20, 2022 – Once again, Congress has failed to take action to ensure that families affected by Huntington’s disease (HD), a devastating brain disorder that impacts more than 200,000 American families, have uninterrupted healthcare coverage. The FY23 Omnibus Appropriations Package, which will be voted on later this week, does not include provisions of the Huntington’s Disease Parity Act (S. 868, H.R. 2050) which would eliminate the two-year waiting period for Medicare coverage and Social Security Disability Insurance (SSDI) benefits for those who qualify for federal disability because of the serious progression of their Huntington’s disease.
For HD-affected families, congressional inaction has real consequences. Families affected by HD will continue to have to brace themselves for two years without medical care in a system that puts their needs at the bottom of the congressional priority list. Two years is too long for someone disabled by their incurable neurological disease to suffer without medical coverage, and Congress could close this loophole for relative pennies on the national budget.
We are grateful for the continued leadership of Senators Gillibrand (NY) and Cassidy (LA) and Representatives Pascrell (NJ) and Kinzinger (IL) who championed the HD community through the final hours of Omnibus negotiations. Additionally, we are thankful for the thousands of families who met, called and emailed their elected officials to raise awareness of the HD Parity Act and the needs of HD families.
Unfortunately, despite 12 years of advocacy, HD families will continue to suffer federal neglect and wait for the Medicare and SSDI systems to support their health needs. HDSA will stand by them and support them until appropriate care and a cure is available to all.
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease. The symptoms of HD are described as having, ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with HD and their families. To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call (800) 345-HDSA.
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