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Who says cancer patients are worthless?

Those of us who have experienced life-threatening illnesses or chronic health conditions are used to putting up with challenges and frustrations that people in perfect health don’t have to deal with. However, no matter what disease might challenge us, we don’t consider ourselves to be worth less than anyone else.

Unfortunately, some influential players in health care policy disagree.

An organization named ICER — the Institute for Clinical and Economic Review — is making major waves with its new method of determining health care “value.” Specifically, it is developing “value frameworks” that could be used to cap or reduce the amount of care patients receive if a treatment is deemed too expensive.

ICER has just released a draft report about treatment for multiple myeloma, a rare cancer. In a few months, it will publish a similar assessment on lung cancer, one of the most prevalent cancers in the United States. Medicare has already suggested that ICER’s approaches could become a benchmark for how it pays for drugs.

ICER’s not-so-secret ambition? To become the American analog of a group in the United Kingdom called NICE, which has delayed or prevented many new high-tech cancer drugs from getting to market, mostly due to cost factors. In fact, NICE has contributed to the United Kingdom having the poorest overall cancer survival rates in Western Europe and has been criticized by the EU for leading to wrong decisions that jeopardize patients’ lives.

In both cases, NICE and ICER use complicated mathematical formulas to determine which treatments are “worth it,” and which are not. Their methods are based on a concept called the QALY (Quality Adjusted Life Year) that values a healthy year at “1.0” and devalues a person’s year to a fraction if they are diagnosed with a disease. If the QALY sounds discriminatory, it is: Many health economists have warned that the QALY can lead to unfavorable and inequitable patient outcomes.

Under this system, if you get sick, you become a fraction, and your time no longer has the same value as a fully healthy person’s. In ICER’s report, once diagnosed with multiple myeloma, your time might be valued as low as three-fifths of a whole. In some QALY-based evaluations, a person never recovers full value for their time, even after surviving a disease.

This is a terrifying development. If they’re anything like NICE’s reports, ICER’s analyses could provide a basis for insurers to deny coverage for drugs, hinder scientific investment for cancer, multiple sclerosis and other diseases, and leave patients facing the equivalent of much ballyhooed “death panels” that ration care.

As a health economist, I believe that ICER devalues and discounts patient lives and survival years that should be highly valued. As a cancer survivor, I take great offense at any suggestion that I might have been “worth less” at any point in life.

I interact daily with cancer patients and survivors. We would never say that our lives have less value than before our diagnoses, even on the worst days. In fact, many would argue that our time feels infinitely more valuable after cancer.

Sadly, it appears that ICER’s multiple myeloma report authors are neither patients nor practicing physicians, and patient voices are sorely lacking from the organization’s work. Have the authors ever had a family member or loved one with cancer who had to fight for access to the best and latest treatments in order to survive?

Here’s the bottom line: This “value framework” system isn’t only offensive to patients and survivors like me, but also has the potential to create life-threatening rationing of health care resources, encourage age-based and gender-based discrimination in health care policy, and exacerbate disparities in survival and access to care that are already borne disproportionately by minorities and the poor.

Patients and the public need to demand health care that is not rationed based on unfair or discriminatory formulae. We will not be turned into fractions. We are not worth less.

Jennifer Hinkel is a health economist and graduate of the London School of Economics. She writes from Incline Village.

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