Millions of Americans are living with chronic illnesses and disabilities. In generations past, we did not live well or long with these conditions.
Today, scientific advancement has ushered in more innovative therapies and technologies than ever before. Societal evolution has led to policies that have made navigating the world as someone living with one or more of these conditions progressively better.
Cancer patients, for example, are living longer than ever before. They have more options for treatment that can not only extend their survival but can also improve their quality of life.
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Through organizations such as the Cancer Support Community, we attend to the social, emotional and logistical burdens many cancer patients and survivors experience. We know that comprehensive, high-quality cancer care must encompass every facet of a patient’s life.
However, this progress comes at a cost. Innovation is expensive, and with high-cost therapies come difficult decisions about scarce health resources.
We have an opportunity to make these decisions through a patient-centered lens that takes the needs, values and preferences of individuals into account. Yet, the current movement toward assessing the “value” of treatments falls dangerously short of an ethical and appropriate way of making these decisions.
Within many of these value assessments, the quality-adjusted life year is the measure used to calculate value. Considered by some health economists to be the “gold standard” of analysis, the QALY is widespread in research and is often used by insurance companies to make coverage decisions. Yet the QALY is plagued with controversy.
The measure has inherent ethical and operational concerns, particularly for people living with chronic conditions and disabilities. The lives of people in “less-than-perfect health” are valued less than those “in perfect health.” It is impossible to make broad brush value assessments for all people when we make judgments about diverse individuals that discriminate and penalize.
The Cancer Support Community led an initiative to explore patient perspectives on the QALY. We launched a study with over 700 cancer patients and survivors and found that patient awareness of the QALY was exceedingly low at 7 percent, even among a largely health literate and informed study population.
Once patients were provided information about the use of a QALY, two-thirds were concerned about the potential implications of the measure. They referred to it as “ethically inappropriate” and “immoral.” One person said, “I am afraid that if the QALY is used to determine treatment, some patients will not be given treatments that may help them.”
Overall, study participants were passionate that they deserve personal autonomy over treatment decision-making. Value decisions made outside of the patient-provider relationship are found to be troubling. Patients are concerned that their access to appropriate therapies will be limited if we continue to go down this path.
As a representative of the patient advocacy community, we believe that patients make informed decisions that are right for them. In a partnership with their loved ones and their providers, patients make careful choices regarding treatments that fit into their lives and personal value framework.
Discriminatory measures such as the QALY should be banned in the United States. Organizations determining value must be completely transparent and incorporate patient, survivor and caregiver feedback into assessments. Individuals living with chronic diseases and disabilities have a right to know how decisions that could have irreparable impact on their lives are being made and must have their voices heard.
Elizabeth Franklin, MSW, is currently executive director of the Cancer Policy Institute at the Cancer Support Community headquarters in Washington, D.C., which is the largest professionally led nonprofit network of cancer support worldwide.
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