FOR IMMEDIATE RELEASE
NATIONAL DOWN SYNDROME SOCIETY PRESIDENT & CEO TESTIFIES TO CONGRESS ON HEALTHCARE DISCRIMINATION
Washington, D.C. (February 3, 2023) – President and CEO of the National Down Syndrome Society (NDSS), Kandi Pickard, testified 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 has been President and CEO of NDSS since 2019 and is also the mother of a ten-year-old son with Down syndrome. Pickard was invited to testify on the Protecting Healthcare for All Patients Act (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.
At the hearing, Pickard spoke about how QALYs devalue the lives of people with disabilities and ultimately lead to restricted access and coverage of necessary healthcare and treatments. “It is outright discrimination to deny individuals with disabilities access to the treatment and care they deserve and need because a calculation determines their life is not worth the cost,” said Pickard. Pickard also shared her personal concerns as a mother of a child with Down syndrome.
QALYs are a metric used for determining the cost-effectiveness of a course of treatment by evaluating the merits of covering the costs of a drug or treatment relative to the quantity and so-called “quality” of years that will be gained from such a course of treatment. 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.
Tony Coelho, Chairman of the Partnership to Improve Patient Care, stated, “We know that there is disability bias in the public that devalues how quality of life is quantified in QALY algorithms. With this bill, we hope all people with disabilities achieve a meaningful voice in coverage and reimbursement decisions.”
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.