The QALY has limitations, but is it a form of racism? A thread 1/11

A recent multi-stakeholder treatise suggests so, using a tantalizingly straightforward-sounding logical flow: http://www.pipcpatients.org/uploads/1/2/9/0/12902828/disparities_and_value_assesssment_white_paper_final.pdf 2/11

The argument: (1) the QALY discriminates the disabled and more severely ill, something communities of color struggle with more than white populations; and (2) many QALY-based analyses are based on clinical trials, in which communities of color are underrepresented. 3/11

The first argument is not new, dating back to the Oregon experiment and before. But the discussion often focuses on absolutes (a person with a utility of 0.5 is valued less than one with 0.7) even though QALYs are evaluated incrementally in cost-effectiveness analysis. 4/11

The blog post also states that QALY gains among the severely ill/disabled are smaller than those who are not as ill. Most examples making this claim assume that life is extended but quality of life is unchanged. 5/11

E.g., life extension of 10 years at full health = 10, but at utility of 0.75 = 7.5 years. But really, how many truly effective treatments extend life without improving it? Not many. 6/11

So, treatment A extends life by 10 years, B extends by 5. If QoL is not diminished, QALY gain is 5. But what if A also improves QoL in the person disabled to a 0.75 level, say to 0.9? Then A results in 9 QALYs, B in 3.75, and gain is 6.25. A not unreasonable scenario 7/11

If we do not assume any impact of disease on QoL, then there is no headroom for treatment to improve it. We have made this point before, including in a back and forth with one of these groups: https://cevr.tuftsmedicalcenter.org/news/2019/pipcreply 8/11

The second argument, about under-representation in clinical trials, is absolutely true. And also ridiculous in the context in which it's delivered. It is essentially blaming HTA bodies like @icer_review for using clinical trial data to inform cost-effectiveness studies. 9/11

Any HTA organization must work with the data presented to it. If those data underrepresent persons of color and are underpowered for subgroup analyses, why point the finger at HTA? Aren't the study sponsors to blame? 10/11

Many of these study sponsors also sponsor 3 of the 4 signatories on the blog in question. Is that why no ire is directed their way? I'll let you decide, I'm done for the night: https://www.reuters.com/article/us-usa-drugpricing-lobbying-special-repo/special-report-big-pharma-wages-stealth-war-on-drug-price-watchdog-idUSKBN2621IQ 11/11