“COMPARATIVE EFFECTIVNESS” PROVISIONS: NEED FOR LANGUAGE PROTECTING AGAINST CRITERIA THAT DISCRIMINATION BASED ON DISABILITY
As one medical journal article describes it, “The basic idea underlying the QALY [Quality-Adjusted-Life-Year] is simple: it assumes that a year of life lived in perfect health is worth 1 QALY (1 Year of Life × 1 Utility = 1 QALY) and that a year of life lived in a state of less than this perfect health is worth less than 1. . . . By moving away from a purely biological model . . . a need arises to focus on areas such as the individual's ability to operate in society [and] disability.” Some measures have “negative . . . scores for health states perceived as being worse than death.”
In a featured piece in the July 19 New York Times Magazine, Princeton bioethicist Peter Singer openly advocated government rationing of health care, using QALYs. He made it clear that society should be more willing to withhold treatment from those who are old and those with disabilities. “The death of a teenager is a greater tragedy than the death of an 85-year-old, and this should be reflected in our priorities,” he wrote. “[S]aving one teenager is equivalent to saving 14 85-year-olds.” Similarly, “If most would . . .choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life over 10 with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life.”
In one example in the medical literature, an attempt was made to assess different quality adjusted life year scores for each of the following: “no physical disability, limp, walk with crutches, and need a wheelchair.” In another, the authors wrote, “[I]t may be judged that one year of life with a moderate disability is equivalent to 0.75 years of life at optimal health.”
The assumptions built into the use of quality-adjusted life years are often inaccurate. As Hayden Bosworth of the Duke University Medical Center documents, “Patients who have not experienced a stroke . . . or individuals at risk for future stroke . . . respond with low [quality of life] estimates for physical impairments. Yet it is clear that patients who actually experience a high level of impairment as a result of a stroke provide high estimates of their quality of life.”
How could comparative effectiveness research using quality-adjusted-life-years be used to deny treatments needed by people with disabilities? Mark Pauly, a professor in the Department of Health Care Systems at the Wharton School of the University of Pennsylvania, advocates “a bottom-up strategy in which the plan set a target level for spending growth and then used cost-effectiveness analysis to choose the set of new technologies whose cost fit within the limit and which maximized the number of new QALYs delivered. At the limit, a technology would be in the package only if its value of dollars per QALY were lower than that of all excluded technologies.”
--Article Published in July/August 2009 NRL News“Facing the Challenge of Health Care Rationing” by Roger Stenson
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