The Politics of Disease Research

RWJF Scholar in Health Policy Research Rachel Kahn Best explores the impact of advocacy on federal funding for medical research.

As any management textbook might say, to budget is to set priorities. It is as true with the family checkbook as it is with the federal treasury. Money spent on school supplies cannot also be spent on groceries, and money spent on one federal program cannot also be allocated to another. In the case of federal funding for research into the causes and cures for diseases, such eternal budgeting truths have led to some difficult choices in recent years over how much federal research funding should be spent on various deadly and debilitating diseases.

A new study by Robert Wood Johnson Foundation (RWJF) Scholar in Health Policy Research Rachel Kahn Best, PhD, MA, takes a close look at the funding choices made by Congress and the National Institutes of Health (NIH) over the past several decades, and identifies important trends. The article is published in the October 2012 American Sociological Review.

First, Best identifies a significant change in the values undergirding federal budgeting of disease research, and attributes the change to the rise of disease advocacy organizations and their efforts to influence Congress and NIH to increase funding for the patients they represent. "During the past 30 years, people with serious diseases have raised their political voices to an unprecedented degree, organizing to demand funding for research on their conditions," she writes. Best sees this trend as part of a larger, more general growth of nonprofit issue organizations, including those created to further the work of the civil rights, environmental, women's and consumer movements. She also concludes that the rise of advocacy organizations, most notably those focused on AIDS and breast cancer, eventually rewrote the playbook for decision-making on how to allocate federal disease research funds.

Through a Different Lens

Best writes that, before 1980, Congress viewed funding decisions for disease research largely through the lens of the need to support researchers at a variety of institutions—spreading funding across congressional districts or supporting specific institutions conducting the research. But the AIDS crisis in the 1980s, and the federal government's achingly slow response to it, triggered an advocacy backlash, as a range of organizations arose to press the government first to acknowledge the disease, and then to support funding to find cures and treatments.

Soon after, breast cancer advocacy organizations sprang to the forefront, and they, too, focused on a specific disease that principally affected a specific group.

These organizations, together with other disease advocacy groups, would eventually redirect the focus from research institutions to diseases and the patients suffering from them, Best says.

Best derives her conclusions not just from a close reading of history but from analysis of the growth in the number of disease-focused nonprofit organizations during the period, those organizations' budgets, the frequency with which they testified before Congress, and the arguments they made in their testimony. In addition, she examined data from the Centers for Disease Control & Prevention (CDC) on deaths from various diseases, and mortality among various demographic groups.

The first conclusion she draws is that advocacy works. "Increases in the number of nonprofits and lobbying expenditures are both significantly associated with increases in research funding, with each $1,000 spent on lobbying associated with a $25,000 increase in research funds the following year," she writes. "These findings suggest that disease advocacy organizations secured direct benefits in the form of increased medical research funding."

More than that, she points out, the surge in disease advocacy also had the effect of expanding overall federal funding for disease research, meaning that increases in funding for research into diseases with well-organized constituencies did not necessarily come at the expense of funding for research into diseases with less effective advocates. Looked at another way, increases in funding for AIDS and breast cancer research may have increased the overall budget for disease research, she concludes.

New Arguments for a New Advocacy Landscape

As the message frame for research advocacy shifted from discussions about institutions to a focus on diseases, two other significant things happened, Best says.

First, she notes that advocates and policy-makers began to focus on a new metric for funding decisions: dollars per death. Best observes, for example, that in 1984, one breast cancer advocate "testified that the federal government was spending $11,000 for each new AIDS patient but only $400 per person diagnosed with breast cancer. In 1995, a representative of the American Heart Association noted that 'in fiscal year 1993, HHS [the U.S. Department of Health and Human Services] spent 36 times more on research funding per death of an AIDS victim than was spent per death of a heart disease victim.'" Best goes on to observe that while "most advocates based their claims on mortality…advocates for non-fatal diseases based their claims on prevalence, comparing dollars per patient."

Individual members of Congress readily adopted this "dollars per" frame, and used it to advocate for research dollars for causes of particular importance to them. Moreover, as advocates and members of Congress turned up the pressure on NIH to realign its research spending with the societal burden of particular diseases, NIH's funding process began to change as well, opening up more opportunities for input from advocates.

Best argues that another consequence of the new frame was that the dialogue began subtly shifting toward the perceived worthiness of the victims of different diseases. By that metric, diseases to which stigmas attached were at a disadvantage. Rather than argue overtly that one set of patients with a life-threatening illness were inherently more worthy than others, advocates often put forward victims of their disease who were free of stigma. So, for example, Best writes, "lung cancer advocates focused public awareness campaigns on types of lung cancer not caused by smoking." Similarly, while AIDS advocates confronted anti-gay stigma directly, they also promoted legislation to fund treatment for low-income AIDS patients by invoking Ryan White, an Indiana teenager who contracted AIDS by way of a blood transfusion.

In some cases, disease advocates argued outright that their constituencies were more deserving. Best notes, for example, that an advocate for muscular dystrophy research attacked funding for alcohol and drug abuse on the grounds that the afflictions were "health problems of people whose irresponsible behavior causes those problems."

While some disease communities with well-organized advocacy groups were able to sustain their funding, the evolving frame of moral worthiness took its toll on others. Best writes, "Stigmatized diseases received less funding in the new political climate. I document this pattern by tracking funding for lung cancer and liver cancer. Both cancers have potentially stigmatized risk factors (smoking for lung cancer; hepatitis infection and alcohol consumption for liver cancer). Year after year, both diseases received smaller funding increases than would have been predicted based on mortality."

Finding the Balance

Best concludes that the evolution of disease-research politics has both its positives and negatives. "It does make sense to take the societal burden of disease into account and to pay attention to diseases that are killing a lot of people," she says. "And it's good that patients have a voice. But we don't want to leave behind diseases that kill too quickly for patients to organize, or diseases that are too stigmatized to attract public sympathy. It's also important to leave room for scientific flexibility, and for research that doesn't target specific diseases but that gives us a chance to learn more about biology. So far, NIH has done a good job of balancing basic and applied research, and we need to stand by our commitment to fund basic scientific research."

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