Over 80 Patient and Disability Groups Call on Policymakers to Reject Health Policies That Discriminate

Over 80 organizations 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.

Sharon F. Terry, President and CEO of Genetic Alliance, stated, “I have fought for more than 25 years for robust high-quality research and ultimately treatments for people affected by genetic disorders. Due to years of advocacy and research we are finally seeing efficacious gene therapies become available to patients, and it is imperative that those who need these treatments do not have barriers to them. I am highly concerned that short-sighted drug pricing policies that rely on the QALY will disproportionately harm patients by limiting their access to novel therapies, as we frequently see abroad in countries like the U.K. and Canada that rely on the QALY.”

Patricia Goldsmith, Chief Executive Officer of CancerCare, stated, “The Medicare program has long barred the use of QALY’s in reimbursement and coverage decisions, recognizing that this metric discriminates against people with cancer and other serious health conditions. It’s frustrating that state and federal policymakers continue to debate their use in public programs. With this Open Letter, organizations representing millions of patients and people with disabilities demonstrate a united front against state and federal policies like H.R. 3 that overtly use the QALY metric or import it through reference pricing.”

Susan Peschin, MHS, President and CEO at the Alliance for Aging Research, stated, “We are pleased to join with more than 70 organizations against the use of the Quality-Adjusted Life Year (QALY) policies in Medicare and Medicaid that would restrict treatment access for older adults, people with disabilities, and communities of color. A recent report from the Congressional Budget Office made it clear that H.R. 3’s international reference pricing provision uses QALYs, and justifies its potentially discriminatory approach because other countries rely on it. More than a year into the worst pandemic the U.S. has experienced in a century, with 80 percent of COVID-19 deaths among those ages 65 and older, it’s shocking that some in Congress are doubling down on healthcare rationing for older adults.”

Siri Vaeth, Executive Director of the Cystic Fibrosis Research Institute (CFRI), stated, “Thanks to novel treatments, many cystic fibrosis patients have a renewed lease on life. Access to new treatments and the next generation of therapies to follow is essential. I am relieved to see so many groups come together to reject the kinds of policies we saw in H.R. 3 in 2019 that would reference specific foreign countries in which cystic fibrosis patients have to fight tooth and nail for access to life-saving drugs. I urge policymakers to prioritize our most vulnerable and find affordability solutions that help instead of harm patients.”

Read the open letter to policymakers.

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Founded in 1944, CancerCare® is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include case management, counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare® services are provided by master’s-prepared oncology social workers and world-leading cancer experts. To learn more, visit cancercare.org or call 800-813-HOPE (4673).

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