I have gotten the impression over my years in medicine that essentially no one likes to talk about rationing care. Those who oppose the concept on ideological grounds certainly don't want to talk about it. Those who are in acute need of care for themselves or someone they love are potential "victims," and especially don't want to talk about it. Policy makers who may want to talk about it have learned not to like doing so, because no one seems to like hearing what they have to say.
Despite that, the relentless imposition of a simple fact- resources are never infinite -- has resulted in some experimentation. Notably, the state of Oregon initiated a program in the mid 1990s that was called health care rationing by most observers. Defenders were prone to say it never really rationed health care, but rather was a system for "prioritizing funding for health care through systematic and public ranking of medical services." But add finite resources to that characterization, and run it through a universal translator, and "rationing" pops out. By whatever name, the experiment in Oregon lost support over time, and eventually, came undone. To my knowledge, there has been nothing like it in the U.S. since.
That is not to say rationing has become irrelevant. Quite the contrary, health care economists, medical philosophers, and policy makers across the political spectrum, have suggested that we ration health care resources routinely in the U.S.
There is an unavoidable consequence of doing something you aren't willing to talk about doing: you do it badly. No discussion means no probing, no deep thinking, no careful exchange of ideas. We do, indeed, ration health care in the United States; we just don't talk about it, with the result that we ration it altogether irrationally.
What do I mean? There is almost no limit to what we will, and routinely do, spend on the often desperately futile care at the very end of life in very elderly people with multi-organ-system failure, a long history of serious chronic disease, and virtually no chance of getting back to a quality of life any of us would be willing to accept. But we routinely fail to cover the costs of effective preventive services that can save both lives and money, and impose substantial barriers in the form of co-pays and deductibles on care that is essential. One could argue that rationing of dollars is even more extreme in the research context, where we spend a lot on treatment advances and near-to-nothing on prevention; lavishly on learning what we don't know, and negligibly on putting what we do know to good use.
At the peak of attention to health care models, before the Affordable Care Act came off its assembly line, colleagues and I published a proposal for a tiered model. We suggested that certain varieties of care -- both effective preventive services, and urgently needed treatments -- should be available to all with no financial barriers. A tier of services of slightly lesser value or need could be available to all, but might reasonably involve some barriers in the form of copays. Finally, a tier of quite discretionary services might come entirely out of our own pockets. This is one example of potentially rational rationing.
But as noted, we don't like to talk about rationing. So we just keep doing it badly.
As some of you likely know, I have for several weeks now been championing the case of a 23-year-old college student with the dreadful, dual burdens of a rare, life-threatening cancer; and an insurer refusing to cover the costs of care recommended by his oncologist. I write today partly to announce that the Change.org petition I started on behalf of Manny Alvarez and his family, directed at getting Blue Cross Blue Shield of Florida to reverse its denial of coverage, has over 100,000 signatures. That is a roar.
But I am puzzled by the silence. We are, after all, a population of some 3 million here in Connecticut, so 100,000 is just over 3% of us. We are, in the U.S., some 300 million; so 100,000 is just 0.03% of us. That's a lot of silence.
Of course, we can trim those silent majorities from 97% and 99.97%, respectively, by eliminating all who are too young, too old, have no Internet access, don't speak English, or just never got the memo. Still, there's a lot of silence left.
There are many reasons for it, but I am quite confident that agreement with Blue Cross Blue Shield of Florida is not on the list. If anyone, anywhere believes that the right time to ration care is when a formerly healthy, vibrant 23-year-old has his one best shot at surviving by use of care chosen and recommended by an expert oncologist- I've never met them. I am quite sure they don't exist, outside of insurance companies.
Frankly, I would like less silence- so if you have not yet shouted your signature on Manny's behalf, I ask that you do. Please chip in and help the family directly while you are at it, if you can. But either way, Blue Cross Blue Shield of Florida should know that agreement with their decision is not among the explanations for your silence. In contrast, impassioned disagreement is exactly the reason for the roar of over 100,000 who stand with Manny Alvarez.
-fin
Director, Yale University Prevention Research Center; Griffin Hospital
President, American College of Lifestyle Medicine
Editor-in-Chief, Childhood Obesity
Founder, The True Health Coalition
Author: Disease Proof