Advocates for People with Disabilities, Chronic Conditions and Older Adults Request Policymakers Reject Health Policies That Discriminate

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We are pleased to join the more than 80 organizations that signed a letter calling on policymakers to reject health policies that discriminate. Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities.

Maria Town, President & CEO of the American Association of People with Disabilities (AAPD), stated, “It is disappointing that we still have to fight policies that discriminate by referencing discriminatory metrics to value health care, whether directly or indirectly from foreign governments. This is not a new debate. The U.S. established that QALYs discriminate by devaluing disabled lives as far back as 1992 when HHS rejected their use in Medicaid due to violating the Americans with Disabilities Act (ADA). The Affordable Care Act (ACA) banned their use in Medicare in 2010. We don’t need more ableist policies in a pandemic.”

Julia Bascom, Executive Director at the Autistic Self Advocacy Network, stated, “We agree with the National Council on Disability that the pandemic has provided some harsh lessons, particularly about the implicit and explicit bias against persons with disabilities in healthcare. In this moment, we should be debating how to strengthen federal nondiscrimination laws, not undermining them by reference to discriminatory metrics such as QALYs.”

The Disability Rights Education & Defense Fund, stated, “DREDF and our partners were proud to work with the National Council on Disability (NCD) to develop a series of reports on bioethics and disability, including one that focused on the discriminatory implications of the QALY. The report showed how evaluating medical treatment based on QALYs devalues life with a disability and can limit access to care. We hope this Open Letter, coming after COVID-19 has vividly illustrated how disability barriers and implicit bias persist and can compound other kinds of discrimination despite decades of federal law, encourages policymakers to effectively limit the use of QALYs in health programs and decision making.”

Kelly Buckland, Executive Director of the National Council on Independent Living (NCIL) stated, “On August 5, 2020, the membership of the National Council on Independent Living (NCIL) unanimously adopted a Resolution Opposing the Use of QALYs (Quality Adjusted Life Years) in all decisions concerning health care coverage. The Resolution was jointly developed by Not Dead Yet and the Autistic Self Advocacy Network and resolved that NCIL will work with Congress, the Department of Health and Human Services Office of Civil Rights, Department of Justice, and others to ensure that QALYs are not used in decisions concerning public and private health care coverage. It is great to see so many others are with us in opposing QALYs.”

Diane Coleman, President and CEO of Not Dead Yet, stated, “This open letter is an important statement to demonstrate we are a united voice against discrimination in health care. Were disability rights laws being appropriately enforced, we would not have to publicly state that discriminatory “quality of life” measures should not be referenced or imported from other countries to make coverage and reimbursement decisions in health care. With enforcement, we would not see states actively inviting the use of such discriminatory measures into their Medicaid programs.”

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