Having Cancer Doesn’t Make Me Worth Less
An economic formula that counts sick people as fractions could ration health care and penalize cancer patients. But going through cancer has made my life seem more valuable, not less.
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.
While using the QALY might be a nice academic exercise, its use becomes discriminatory when it’s used to ration care for particular groups of patients or prioritize spending. Use of the QALY becomes downright life-threatening when it is used to justify arguments that it’s not “worth it” to treat people with cancer using new drugs that have recently come to market, solely based on the expense of these drugs and the assumption that a sick person’s time is worth less. The European Commission looked at how the UK was using the QALY to make decisions on cancer and said:
“The research provides robust scientific evidence that QALYs produce hugely inconsistent, wrong results, on which important decisions are being made. Agencies such as NICE should abandon QALY in favour of other approaches.”
Despite these critiques, and the inherent unfairness of saying that a sick person has less value than a healthy person, the QALY-based approach of NICE is now the same methodology that ICER is using in the US. If allowed to continue, ICER could provide American insurance companies a basis to deny coverage for drugs, dis-incentivize investment in cancer science, and leave patients facing the equivalent of some much-ballyhooed “death panel” for the rationing of their health care.
I’m closely tracking what ICER does for two reasons. First, I’m a health economics and policy consultant, so it’s my job to analyze developments in the landscape and understand the impact to patients, biotech companies, or doctors. Second, I’m a cancer survivor, and I take enormous offense at the suggestion that at any point in my life, I might have been worth less than one.
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.
I interact with cancer patients and survivors daily, and not a single one of them would ever say, even on the worst or sickest days, that their life has less value than before their diagnosis. Their families and friends would agree. Having cancer does not devalue a person. It does not make someone worth less.
The ivory-tower methodologists at ICER are putting all of us — past, current, and potential future patients — at risk with their academic, vaguely patriarchal methodology that seeks to say who is “worth it” and who is not. ICER’s authors are neither patients nor practicing physicians. One wonders if anyone writing ICER’s reports has 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.
In a contrasting view, Professor John Harris of the University of Manchester, one of the world’s leading biomedical ethicists, has written that use of the QALY “requires us” to “abandon” people whose quality of life might be poorer than the more fortunate, because formulas using the QALY seek to maximize only “life years,” and not save lives. QALYs have also been demonstrated to be ageist, sexist, and likely discriminatory against those with lower socioeconomic status, as income and life-expectancy are correlated. Professor Harris has called the QALY “fatally flawed” and suggested that its use has implications for civil rights and “unwarranted” discrimination.
Using the QALY isn’t only offensive to patients and survivors such as myself, but has the potential to create life-threatening rationing of health care resources, to encourage age-based and gender-based discrimination in health care policy-setting, and to exacerbate disparities in survival and access to care that are already borne disproportionately by the poor and minority groups.
Patients, and the public, need to tell ICER and Medicare that we don’t want health care to be rationed based on an unfair and discriminatory formula that turns us into fractions and tells us that our lives are worth less the moment we are diagnosed with cancer.
ICER’s report is open for public comment until May 9, and you can comment by attaching a word document in Times New Roman, 12 pt font, of less than 3 pages (ICER’s specifications, not mine) to firstname.lastname@example.org. More info here. Medicare is considering using ICER as a benchmark for policy; you can publicly comment on that proposal by May 7 at this link, and by clicking “Submit a Formal Comment”.