The way medical research is funded in the United States has been vastly altered over the last 20 years by advocates asking that research be focused on particular diseases, according to a new study.
Since the 1980s, a growing number of health advocacy groups have lobbied Washington for research dollars. As these groups have grown in size, the new study says, they have begun to influence how the federal government, in particular the National Institutes of Health, allocates its dollars.
In the new report, published Sunday in the American Sociological Review, sociologist Rachel Best analyzed funding for 53 diseases over 19 years, looking to see whether there was any clear relationship between advocacy and funding. Unsurprisingly, she found that there were clear effects: The more advocacy, the more research dollars for specific diseases, such as HIV/AIDS and breast cancer.
But because there is only so much money in the NIH budget, research funding tends to be a zero-sum game. So Best also found that the overall portfolio of NIH funding moved toward those with the money to lobby, and away from groups that did not. The biggest losers were diseases that primarily affected women, such as cervical cancer, and the African American community, such as sickle cell anemia. (The exception to the rule was breast cancer, which has very well organized lobbying efforts.)
Best also found that the changes had system-wide effects on funding that trickled down to the practice of science as well. In particular, Best argues that the efforts of particular groups to focus research efforts on particular diseases motivated the government to move the NIH away from research projects that were general, basic-science projects with the potential to affect many diseases to ones that were focused on single diseases or disease groups, such as diabetes or cancer.
Though the NIH resisted this push in the name of scientific independence, Best’s analysis showed that, over time, funding came more in line with a particularly morbid-sounding metric: “dollars-per-death.” According to Best, the phrase grew out of some disease advocates’ objections to a focus on HIV/AIDS research after AIDS activists’ great successes in garnering NIH funding in the early 1980s.
While HIV/AIDS was viewed as a deadly disease greatly in need of a cure, many advocates for other ailments believed it was receiving too much funding. In 1984, for example, Rose Kushner, advocating on behalf of breast cancer research, pointed out that the NIH was spending about $11,000 in research dollars per HIV/AIDS patient, compared to $400 per breast cancer patient.
Best writes that such “dollars-per-death” lobbying led to an increased NIH focus on funding diseases with high mortality. And her statistics back it up: Best found an increasingly strong relationship over time between mortality and funding.
But this focus on mortality only went so far, Best found. Stigmatized diseases, such as lung cancer (which many connect to smoking) and liver cancer (which many connect to alcohol abuse) increased in funding far less than would be expected from their mortality alone.
According to Best, those data show how even erudite organizations such as the NIH can be shaped by social pressure. “Once patients were viewed as beneficiaries of medical research funding,” Best writes, “disease stigma became increasingly relevant to NIH priority-setting.”
You can read a summary of the study here.
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