Ethical questions loom over innovative efforts that can save lives
November 21, 2019 09:01 AM Eastern Standard Time
WASHINGTON--(BUSINESS WIRE)--The Partnership to Fight Chronic Disease (PFCD) has released the following statement regarding the National Council on Disability’s recent report, “Quality-Adjusted Life Years and the Devaluation of Life with Disability,”:
Bravo @NatCounDis for raising critical #healthcare concerns to the @WhiteHouse about #QALY via @icer_review. Elevating, not undercutting innovations in #healthcare is how best to #Fight4Health, save + improve lives, $. https://ncd.gov/sites/default/files/NCD_Quality_Adjusted_Life_Report_508...
The National Council on Disability’s first report in its series on bioethics and disabilities is to be commended. The report’s conclusion: “[t]he lives of people with disabilities are equally valuable to those without disabilities, and healthcare decisions based on devaluing the lives of people with disabilities are discriminatory,” debunks the practice of using quality-adjusted life years (QALYs) in cost effectiveness evaluations and coverage decisions.
QALYs started in Europe over 30 years ago to ration access and allocate resources. This has not come without limitations and critics. Despite serious problems with QALYs, including those documented in the report above, the Institute for Clinical and Economic Review (ICER) relies heavily on use of QALYs in its value assessments to influence access and coverage policies in the United States.
ICER’s use of QALYs in its evaluation of treatments that improve and extend life for some of the most vulnerable populations perpetuates the discriminatory impact that decades of work to address health equity, social determinants of health, treatment bias, and coverage disparities have fought hard to eliminate.
It should be noted that, in addition to its heavy reliance on QALYs, ICER receives significant funding from insurers and uses an insurer’s “health systems perspective” in defining value. The health systems perspective does not concern itself with costs outside the health system, so benefits of treatments that enable independent living, reduce caregiving needs and burden, promote ability to work, or add other areas of considerable value to people with chronic diseases and disabilities, employers, and society as a whole are limited or ignored.
Research estimates have shown that 1,100,000 lives could be saved annually through better prevention and treatment of chronic disease. Further, treatment advances and breakthroughs could save as much as $418 billion annually.1 With significant breakthroughs to reduce disability, mortality, and total overall health care costs becoming available, undercutting innovations and efforts to advance treatments is short-sighted.
Achieving value in health care cannot be founded on using QALYs or other discriminatory assumptions that devalue the life of people with disabilities or chronic conditions. We commend the National Council on Disability for their ongoing efforts to support people living with disabilities, including their report and its important contribution to understanding the serious bioethical problems and discriminatory impact of using QALYs in making health care resource decisions.