FOR IMMEDIATE RELEASE :
NDSS Contact:
Michelle Sagan
media@ndss.org
301-728-0447
NATIONAL DOWN SYNDROME SOCIETY APPLAUDS PASSAGE OF H.R. 485 OUT OF THE HOUSE OF REPRESENTATIVES, URGES SENATE TO TAKE ACTION IN A BIPARTISAN MANNER
Washington, D.C. (February 7, 2024) – Today, H.R. 485, the Protecting Healthcare for All Patients Act, passed out of the United States House of Representatives.
The National Down Syndrome Society (NDSS) applauds the passage of H.R. 485 which would prohibit federal programs from using Quality Adjusted Life Years (QALYs) and other metrics that discriminate against people with disabilities, people with chronic conditions, and the elderly. A 2019 report from the National Council on Disability (NCD), an independent federal agency that advises Congress and the executive branch on disability policy issues, found sufficient evidence of the discriminatory effects of QALYs on individuals with disabilities and concluded that the utilization of QALYs violates the Americans with Disabilities Act (ADA).
Earlier this year, NDSS President and CEO Kandi Pickard testified in support of the bill at the United States House Committee on Energy and Commerce Health Subcommittee hearing titled “Lives Worth Living: Addressing The Fentanyl Crisis, Protecting Critical Lifelines, And Combatting Discrimination Against Those With Disabilities.” Pickard also shared her personal concerns as a mother of a child with Down syndrome.
While today’s passage marks a step forward for the critical piece of legislation, NDSS recognizes the importance of the United States Senate taking up the issue in a bipartisan manner. “I am appreciative of the efforts of Congresswoman Cathy McMorris Rodgers, a fellow mother to a son with Down syndrome, for her leadership on this critical issue,” says Pickard. “It is our sincere hope that members of Congress from both sides of the aisle can come together to find a bipartisan solution and a path forward for this bill in the United States Senate.”
NDSS joins the National Council on Disability (NCD), the Consortium of Constituents with Disabilities (CCD), and more than 100 disability and patient advocacy organizations in supporting the prohibition of QALYs in federal programs.
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About NDSS
Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more.