FOR IMMEDIATE RELEASE
NATIONAL DOWN SYNDROME SOCIETY APPLAUDS PASSAGE OF H.R. 485 OUT OF COMMITTEE, URGES FULL HOUSE TO TAKE ACTION IN A BIPARTISAN MANNER
Washington, D.C. (March 24, 2023) – Today, H.R. 485, the Protecting Healthcare for All Patients Act, passed out of the House Energy and Commerce Committee. The bill will now be sent to the full House floor for action.
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.
Since the hearing, NDSS has continued to advocate in support of the bill but was disheartened to see that a bipartisan agreement could not be reached to ensure these discriminatory metrics do not continue to impact healthcare access and coverage for the disability community.
NDSS urges Members of Congress from both sides of the aisle to take swift action to pass H.R. 485 in the House. “I am thankful for the leadership of Representative Cathy McMorris Rodgers, a fellow mother to a son with Down syndrome, for her action on this critical issue,” says Pickard. “Cost-effectiveness determinations are important to ensure drug prices are accessible for the disability community; however, we believe there is a way to achieve cost-effectiveness without using discriminatory metrics such as QALYs, equal value life years gained (evLYG), or similar metrics. We sincerely hope that legislators can come together to pass H.R. 485 with the strongest protections possible for the disability community.”
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.
The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities. Founded in 1979, NDSS supports and advocates for the Down syndrome community by focusing on three key areas of programming: Resources & Support, Policy & Advocacy, and Community Engagement. Within these focus areas, NDSS engages in various activities, events, and programs such as the National Advocacy & Policy Center, which seeks to create systemic change through engaged advocacy; the National Buddy Walk® Program, which honors and celebrates individuals with Down syndrome in local communities across the world, and other initiatives that provide support, informational resources, and community engagement opportunities for individuals with Down syndrome and those who support them. Visit www.ndss.org for more information about NDSS.