A message from Sara Traigle van Geertruyden, Partnership to Improve Patient Care
PIPC Members, Friends and organizations supporting
Value Our Health: We are excited to share with you a report from the National Council on Disability entitled: Quality Adjusted Life Years and the Devaluation of Life with Disability. See https://ncd.gov/sites/default/files/NCD_Quality_Adjusted_Life_Report_508.pdf
The report is comprehensive and included input from a variety of stakeholders. Its authors did a tremendous job explaining the QALY and its implications and provided thoughtful recommendations.
The cover letter states:
When health insurance will not cover medically necessary medications and treatments, individuals experience poorer health and a lower life expectancy. Nonetheless, in an effort to lower their healthcare costs, public and private health insurance providers have utilized the Quality Adjusted Life Year (QALY) to determine the cost-effectiveness of medications and treatment. QALYs place a lower value on treatments which extend the lives of people with chronic illnesses and disabilities. In this report, NCD found sufficient evidence of the discriminatory effects of QALYs to warrant concern, including concerns raised by bioethicists, patient rights groups, and disability rights advocates about the limited access to lifesaving medications for chronic illnesses in countries where QALYs are frequently used. In addition, QALY-based programs have been found to violate the Americans with Disabilities Act.
The US government does not have a single comprehensive policy on QALYs. Some federal agencies are banned from utilizing measurement tools like QALYs, while some state and federal partnership programs, such as state Medicaid programs, may. NCD is troubled that health insurance providers, government agencies, and health economists are showing increasing interest in using QALYs to contain healthcare costs despite QALYs’ discriminatory effect.
The report makes recommendations from page 69-71, including calls for Congress to prohibit use of QALYs by both Medicaid and Medicare, for HHS to advance “best practices” that facilitate greater access to care and better recruit and engage people with disabilities, that DOJ and OCR provide Medicaid guidance on implications of use of QALYs under Section 504 and Section 1557, and that CMS use alternatives to QALYs that recognize complexity of healthcare coverage decisions and refrain from modeling US pricing after other countries that rely on QALYs and deny access, including a call for the administration to rescind the ANPRM proposing an international pricing index.
We highly recommend that everyone review, share, and like this document. It’s going to be a great asset for explaining the QALY and the evolution of the debate around it.
Sara Traigle van Geertruyden
Executive Director
Partnership to Improve Patient Care
100 M Street SE – Suite 750
Washington, DC 20003
(202) 688-0226 (direct)
(202) 494-5924 (cell)