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ICYMI: One Patient’s Perspective: Having Cancer Doesn’t Make Me Worth Less

April 22, 2016
Yesterday, cancer survivor and health economist Jennifer Hinkel shared her perspective on the Institute for Clinical and Economic Review’s Value Assessment Framework:
An organization named ICER — the Institute for Clinical and Economic Review — is making big waves in health care circles. It calls itself “a trusted non-profit” despite suggestions that it takes significant funding from the health insurance industry. ICER has just released a draft report about treatment for a rare and difficult-to-treat cancer called Multiple Myeloma. In a few months, it will publish a similar assessment for Lung Cancer. Medicare is already considering use of ICER’s approaches in official policy.

ICER’s not-so-secret ambition? To become the American analog of a group in the United Kingdom called NICE, which is far from “nice.” NICE rations health care and keeps the newest high-tech cancer drugs off the market due to their cost. In fact, the policies of NICE have led to the UK having the poorest overall cancer survival rates in Western Europe.

NICE and ICER use fancy math to determine which treatments are “worth it” and which are not. Their formulae are based on the QALY (pronounced “quallie”), an acronym for “Quality Adjusted Life Year.” As a one-sentence crash course in health economics, the QALY is an invented metric that values a healthy year at “1.0” and then devalues a person’s year to a fraction if they are diagnosed with a disease. For example, in ICER’s Multiple Myeloma report, a person with Multiple Myeloma might have a QALY worth only 0.61 to 0.82 instead of 1.0. In the most basic terms: if you get sick, you become a fraction, and your time no longer has the same value as a fully healthy person’s time. In the case of ICER’s report, once you’re diagnosed with Multiple Myeloma, your time might be valued as low as 3/5 of a whole. In some QALY-based evaluations, a person never recovers full value for their time, even if she or he survives the disease.

In fact, I would argue that my time is more valuable after surviving cancer; as patients or survivors, we are never less valuable than anyone else.

Read the full piece here.