Editorial: QALY Ban Bill a sign of how far we've come.

Last week, the U.S. House passed legislation which would prohibit the use of Quality Adjusted Life Years across all federal programs. I find myself having somewhat mixed feelings on the subject. On the one hand, we and other disability rights advocates have been campaigning for years for a ban on this discriminatory measure, one mathematically built on the presumption that life lived with a disability is inherently less valuable than life lived without one, and seeing this hurdle cleared is exciting. On the other hand, the vote was partisan, with Republicans supporting the legislation and Democrats opposing it, for reasons that seemed to have little to do with the longstanding advocacy of community and a great deal more with a larger proxy battle over the Administration's healthcare policies. It would be absolutely tragic to see this critical issue for our community become yet another political football, especially when the major legislative victories of our movement, such as the ADA, have been bipartisan.

Yet, taking a step back, it is remarkable to see just how good a position we are on this issue compared to when I got involved in this (already longstanding) fight in early 2018. Back then, it was a challenge to get legislators of any party or public officials of any standing to take our community seriously when we raised concerns that this metric and the ethos behind it was discriminatory. Over and over again, we were told in so many word that we were either confused, misinformed, or paranoid, and that no one would ever deny care to someone with a disability because their life was judged less worth saving. The subsequent years would provide plenty of evidence to the contrary, from CVS offering insurance plans the option of denying coverage for any drug that cost more than $100,000 per QALY (which was withdrawn under public pressure), to the revelation that Oregon Mediaid was denying care to both children and adults using a cost effectiveness ranking based in part on the QALY, to people with Cystic Fybrosis in the UK having to wait years for access to new treatments. Most significant, of course, was the COVID 19 pandemic, where numerous Crisis Standards of Care sent people with disabilities to the back of the line for ventilators and hospital beds, in some states based on specific disability categories and in others on biased projections of life expectancy. Since then, it has been awfully difficult to tell the disability community that is ridiculous to worry we would be denied care.

Today, while this fight is by no means won, we have made significant progress. While the Biden administration opposes the House bill, its Office of Civil Rights inside the department of Health and Human Services put forward a proposed 504 rule that includes major, well thought-out regulations on cost-effectiveness metrics like the QALY. While I personally prefer the latter approach, this means that (in a profoundly politically divided nation) we've gone from neither party seeing this issue as a priority to each taking steps to address it. Here in Massachusetts, there is both a hard QALY ban bill before the legislature (which we support) and our own Healthcare Nondiscrimination Bill, which (in addition to a host of other healthcare protections for our community) would prohibit the QALY while leaving space for alternative metrics that do not devalue the life-extending effects of healthcare treatments. The latter approach came about via negotiation and compromise with cost-effectiveness advocates, something which I would have thought highly unlikely back in 2018 but I think was genuinely instructive for both us and them.

All of this is to say that, while there is still significant opposition to the idea of doing anything to stop discrimination against our community in this sector, we have begun to move from arguing about whether we should address the way these metrics devalue disabled life to how we should address it, and that is exciting. There are going to be legitimate disagreements on that question within the disability community on that question, particularly about what should replace the QALY if it is banned, but even there we've seen huge progress, such as the emergence in academic circles of viable alternative metrics like Health Years in Total. I look forward to DPC playing a significant role in those debates, and to continuing to advocate for a world where drugs are affordable, metrics are both effective and non-discriminatory, and no one questions that our lives are both worth living and worth saving.

— Colin Killick
Executive Director
Disability Policy Consortium