Thanks for sharing your perspective and experiences here! I think it’s really valuable for EAs with first-hand experience to write about these issues, and I’m really sorry you went through such a difficult time. You might be interested to read this piece I wrote last year about EA and disability based on my own experiences. It includes some discussion of HALYs, though that’s focused more on the history and perception of HALYs rather than the issues you touched on.
Reading your piece, I very much agree with you that the current methods of constructing HALY weights generally have methodological issues and would greatly benefit from more focus on actual experiences of people in the health states in question. I also agree that the naive application of HALYs as units of utility or “goodness” can lead to some very dark places (especially in light of the methodological concerns you mentioned, it frustrates me that EAs often slip into using DALYs as units of utility when the post-2010 weights are specifically intended to only be a measure of health status).
I have a slightly different perspective on a couple of the other issues you mention, and I’d be curious to talk more with you about these.
First, I think that the existence of difficult tradeoffs is inevitable as long as resources are limited, and moving to HALY alternatives won’t necessarily eliminate these challenges. For example, one of the articles you quote mentions NICE guidelines about drugs for dementia. I would really, really like better medications to exist, but my (admittedly not very in-depth) understanding of the field is that the drugs are quite expensive and don’t do much to improve symptoms or alter the course of the disease. As long we have limited healthcare resources, it’s not clear that there’s an alternate weighting strategy that would justifiably recommend allocating limited resources to buying these medications rather than spending on other health interventions that work better. Here, it seems like the problem is much more the paucity of options and limited resources than the particular weighting scheme.
Another item is the role of HALYs in perpetuating healthcare inequalities. I do agree that there is absolutely a straightforward way in which this is true, but I’ve come to think there’s some more complexity here than I at least initially thought. HALY maximization in some situations encourages improving the wellbeing of people with chronic illnesses/disabilities over extending the lives of able-bodied people. For example, the 2021 GBD disability weights give post-viral chronic fatigue syndromes a weight of 0.22. A policymaker trying solely to maximize DALYs averted would, if such a treatment were available for the same cost, choose to invest in curing five people of post-viral chronic fatigue over saving one fully healthy person’s life (if all the individuals were the same age). I absolutely agree that ME/CFS is underfunded overall, and that there is probably a role for HALYs in that underfunding (in particular, the 2021 GBD disability weights only include values for a small number of recognized post-viral chronic fatigue syndromes, so policymakers may not be able justify investments in broader ME/CFS research/treatment in terms of HALY benefits). I just think the overall picture here is a bit complicated.
The last item is the existence of states worse than death. I very much agree that deciding at a population level that certain people’s lives are worse than death, then making policy on that basis, can lead to very dark and wrong places. However, I really do think that some people in some cases experience states worse than death, both from my own experiences and from the testimonies of others. In my own life, I have had experiences that were bad enough that I absolutely would have traded off shortening my own life to avoid them (for example, I would have been happy to lose a week of healthy life to avoid the worst moments of a shoulder dislocation). More broadly, I do think we should listen to ill or disabled individuals such as Gloria Taylor who’ve described their own conditions as worse than death and advocated for the right to access medical assistance in dying. I think it would be wrong to say that for individuals who describe their lived experience as worse than death and express a desire to access medical assistance in dying, they have not benefited by being able to fulfill their desire. And moreover, not having a weighting scheme that allows for states worse than death I think risks underemphasizing the suffering involved for certain people in cases of extreme pain. As a result, I worry that such a scheme could lead to underprioritizing interventions that improve quality of life and alleviate pain in favor of interventions that save lives. Again, I think it’s absolutely wrong to decide based on population-level statistics that an individual person’s life is worse for them than death, but I think there’s a balance to walk here and I worry that it’s as bad or worse to not listen when people describe their lived experiences as worse than death based on their own values.
Thanks again for writing your piece. I hope these thoughts are useful!
Thanks for sharing your perspective and experiences here! I think it’s really valuable for EAs with first-hand experience to write about these issues, and I’m really sorry you went through such a difficult time. You might be interested to read this piece I wrote last year about EA and disability based on my own experiences. It includes some discussion of HALYs, though that’s focused more on the history and perception of HALYs rather than the issues you touched on.
Reading your piece, I very much agree with you that the current methods of constructing HALY weights generally have methodological issues and would greatly benefit from more focus on actual experiences of people in the health states in question. I also agree that the naive application of HALYs as units of utility or “goodness” can lead to some very dark places (especially in light of the methodological concerns you mentioned, it frustrates me that EAs often slip into using DALYs as units of utility when the post-2010 weights are specifically intended to only be a measure of health status).
I have a slightly different perspective on a couple of the other issues you mention, and I’d be curious to talk more with you about these.
First, I think that the existence of difficult tradeoffs is inevitable as long as resources are limited, and moving to HALY alternatives won’t necessarily eliminate these challenges. For example, one of the articles you quote mentions NICE guidelines about drugs for dementia. I would really, really like better medications to exist, but my (admittedly not very in-depth) understanding of the field is that the drugs are quite expensive and don’t do much to improve symptoms or alter the course of the disease. As long we have limited healthcare resources, it’s not clear that there’s an alternate weighting strategy that would justifiably recommend allocating limited resources to buying these medications rather than spending on other health interventions that work better. Here, it seems like the problem is much more the paucity of options and limited resources than the particular weighting scheme.
Another item is the role of HALYs in perpetuating healthcare inequalities. I do agree that there is absolutely a straightforward way in which this is true, but I’ve come to think there’s some more complexity here than I at least initially thought. HALY maximization in some situations encourages improving the wellbeing of people with chronic illnesses/disabilities over extending the lives of able-bodied people. For example, the 2021 GBD disability weights give post-viral chronic fatigue syndromes a weight of 0.22. A policymaker trying solely to maximize DALYs averted would, if such a treatment were available for the same cost, choose to invest in curing five people of post-viral chronic fatigue over saving one fully healthy person’s life (if all the individuals were the same age). I absolutely agree that ME/CFS is underfunded overall, and that there is probably a role for HALYs in that underfunding (in particular, the 2021 GBD disability weights only include values for a small number of recognized post-viral chronic fatigue syndromes, so policymakers may not be able justify investments in broader ME/CFS research/treatment in terms of HALY benefits). I just think the overall picture here is a bit complicated.
The last item is the existence of states worse than death. I very much agree that deciding at a population level that certain people’s lives are worse than death, then making policy on that basis, can lead to very dark and wrong places. However, I really do think that some people in some cases experience states worse than death, both from my own experiences and from the testimonies of others. In my own life, I have had experiences that were bad enough that I absolutely would have traded off shortening my own life to avoid them (for example, I would have been happy to lose a week of healthy life to avoid the worst moments of a shoulder dislocation). More broadly, I do think we should listen to ill or disabled individuals such as Gloria Taylor who’ve described their own conditions as worse than death and advocated for the right to access medical assistance in dying. I think it would be wrong to say that for individuals who describe their lived experience as worse than death and express a desire to access medical assistance in dying, they have not benefited by being able to fulfill their desire. And moreover, not having a weighting scheme that allows for states worse than death I think risks underemphasizing the suffering involved for certain people in cases of extreme pain. As a result, I worry that such a scheme could lead to underprioritizing interventions that improve quality of life and alleviate pain in favor of interventions that save lives. Again, I think it’s absolutely wrong to decide based on population-level statistics that an individual person’s life is worse for them than death, but I think there’s a balance to walk here and I worry that it’s as bad or worse to not listen when people describe their lived experiences as worse than death based on their own values.
Thanks again for writing your piece. I hope these thoughts are useful!