Dear House Leaders,
We write as patient representatives of more than 100 patient advocacy organizations to ask each of you to support H.R. 485, the Protecting Healthcare for All Patients Act. This bill will protect vulnerable Americans by banning the use of Quality-Adjusted Life Years (QALY) in all federal programs.
Why do we need to ban QALY? In a time when we are demanding more evidence and scientific rigor from the treatments being developed and approved, why would we turn their coverage determination in federal programs over to an arbitrary metric? The QALY is an antiquated metric that does not meet today’s scientific standards for the practice of evidence-based medicine. It is a troubling measure used to place a value on a person’s life, discounting the worth of the disabled, aged, and those living with chronic or life-threatening illnesses (1). In the simplest of terms, QALYs state that people who are very sick, old, or disabled have a lower value. Ultimately, use of QALYs translates into an ultra-utilitarian view, meaning that fewer resources should be spent on those deemed to be elderly, disabled, or sick because one year of their life is assumed to be “lower quality” and thus worth less than that of a “perfectly healthy” person.
Evidence that the QALY represents a true patient preference or value is nonexistent, perhaps because QALY was originally developed as a policy tool for rationing of healthcare services in the UK’s NHS rather than as an evidence-based, patient-centric measure.(2) QALY values are estimated from population-level surveys around health preferences; these preference-based survey instruments can be notably problematic and have been shown to “perform inconsistently in some populations” including in patients with cardiovascular disease, the leading cause of death in the United States. (3)
The QALY does not represent the value of a medicine or treatment to a patient. It does not measure what it purports to measure.(4) It is a clumsy, blunt instrument, failing to adequately capture or reflect what patients consider to be meaningful improvements in health or what patients say that they value.(5) The full limitations and flaws of the QALY do not need to be rehashed in this letter because they are well documented in published, peer-reviewed literature by world renowned physicians, economists, and policymakers.(6)
As patients, we understand that cost must be weighed against meaningful benefit for medical innovations, but we demand that metrics used to establish a treatment’s value be evidence-based, scientifically rigorous, and unbiased—just as we demand rigorous, unbiased clinical trial evidence to demonstrate safety and efficacy. The QALY is inherently biased, unscientific, and lacking in evidence that would justify its widespread use in policy. This does have a direct impact on patients—we have seen real-world examples of state Medicaid programs citing QALY-based reports to attempt to justify discrimination against patients based on a disability.
Congress must be looking to the future and doing everything in its power to ensure the 21st century treatments and cures available now, and those on the horizon, are valued with unbiased and scientific 21st century instruments, not a 50-year old tool that has never been truly fit for this purpose. We should be looking for ways to measure value based on what it actually means to a patient, and not what we think it should mean to a patient.
Fortunately, innovations in drug pricing mechanisms and outcomes measurement are likely to make the QALY obsolete in coming years. Outcomes Based Agreement programs that align incentives and reward meaningful clinical outcomes for new therapies are just one example of such innovations.(7) The ongoing interest and excitement of policymakers, pharmaceutical manufacturers, hospital groups, and health insurers around such programs highlight that these types of value-based arrangements are the future, representing a patient-centric way to expand access to medicines and control costs. These represent just one new approach, but indicate that there are many possible ways that patients, physicians, pharma, and payers could work together to find solutions that are patient-centric and make sense for specific situations and conditions while creating win-win solutions. The QALY—by placing a restrictive value on the life of a patient, rather than seeking to maximize the value of healthcare dollars to achieve meaningful outcomes—is a relic of the past and creates losing situations for patients.
We should be looking at measures of patient satisfaction and value based outcomes of medicine, rather than placing a value on the life of the type of patient before a medicine is even approved.
We urge you and your colleagues to support and advance the Protecting Healthcare for All Patients Act (H.R. 485) and ban the use of Quality-Adjusted Life Years (QALY) in all federal programs.
We commend each of you for your ongoing efforts to make sure the access needs of our most vulnerable patients remain a priority and appreciate your leadership and support on this critical patient issue.
Sincerely,
Aimed Alliance
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The day that I turned 75 my healthcare was dramatically changed from proactive to almost just palliative. My senior friends all have the same experience of almost chuckling pat on the head ” health care”.