The moral worthiness of a disease at the expense of scientific merit, has become a major factor in the justification for research funding. Rachel Best, an assistant professor at the University of Michigan, shows that the growing influence of disease lobbying groups over the past 30 years has dramatically changed the funding priorities at the National Institute of Health (NIH) and left stigmatized diseases by the wayside.
In her study, Best followed 53 diseases from 1989 to 2007, collecting data annually on the amount of federal funding received, amount of advocacy targeting the disease, as well as the number and characteristics of the people the disease affected. She found that for every $1000 spent on lobbying, the NIH and the Department of Defense (DOD) spent $25,000 more on that disease the next year. In addition to exhibiting the monetary effects of lobbying on securing federal funding for research, the data makes a case for some damning effects lobbying may have on the way science is conducted and who stands to benefit from biomedical advances.
Disease-specific lobbying for federal funds began when HIV/AIDS research was receiving much more funding than any other disease. This meant that nearly every other disease advocacy group could make the claim that their disease of interest was underfunded by the metric of "dollars per death" as compared to HIV/AIDS. This new metric also benefited policymakers, who embraced a simple and seemingly rational way to justify funding allocations. Disease advocates have encouraged Congress to see patients as the primary beneficiaries, rather than scientists or the public at large, and lobbying of this nature has a significant negative impact on stigmatized diseases.
To highlight the effects of "deservedness" on funding allocation, Best tracked the funding trends for lung and liver cancers, both of which have potentially stigmatized risk factors (smoking for lung cancer; hepatitis infection and alcohol consumption for liver cancer). She found that even though these diseases met the criteria of highly funded diseases, namely high mortality, they received smaller funding increases each year than was predicted by a model controlling for advocacy and mortality.
When interviewed, Best highlighted this conflict with the following statement:
"Disease advocacy has attracted more public money to medical research, which could eventually have good effects on health. I am … concerned that it will become increasingly difficult to secure funding for stigmatized diseases and diseases that kill so quickly that people don't have time to lobby."
Patient advocacy has certainly brought about many opportunities for researchers, but it is important to note Nthat preferential increased funding for some diseases comes at the expense of research for stigmatized diseases.
In response to this trend, a growing base of basic science advocates such as Nobel Laureate Roger Kornberg urges politicians and scientists to support the pursuit of basic science research for its own sake, without concern for purpose or application. They point out that basic science research, in the last 100 years, has brought society antibiotics, genetic engineering and X-rays to name a few. "To solve a basic problem in medicine don’t study it directly," Kornberg says. "Rather, pursue a curiosity about nature and the rest will follow."