Spurred in the 1980’s by advocacy groups for HIV/AIDS patients and subsequent shift of seeing the beneficiaries of medical research funding from the scientists performing the experiments to the patients suffering from diseases, funding for basic science research has slowly shifted from a more distributive scheme to a more disease-driven scheme. Until the 1990’s, The US Congress allowed the National Institutes of Health complete autonomy to decide how the money that they received from the federal government was distributed. Increasing criticism leveled at funding allocation by the NIH, with the grim title of “dollars-per-death” requests that money be allocated to research projects that support diseases that have higher death rates. An important distinction is that basic research has the power to make important discoveries that can influence the scientific and treatment landscape for many diseases, rather than just a handful. Traditionally, NIH has resisted the pressure to distribute funds according to the “dollars-per-death” method, instead choosing to retain autonomy when making funding decisions, citing the need to assure that basic research is not penalized at the expense of specific diseases.
An interesting study was recently published in the American Sociological Review, entitled “Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy”, by Rachel Kahn Best . This study compares the amount of lobbying done by social groups representing patients with a particular disease to the amount of funding that research into those diseases subsequently receives from the NIH budget. This is the most recent in a series of studies linking grassroots advocacy to resulting funding levels.
In this newest paper, Best and colleagues studied 53 diseases over 19 years and divided these different types of diseases into categories, including diseases that primarily affect women and African Americans. In this paper Best discusses the fact that without a specific mandate to change the funding model to a disease specific one, lobbying efforts have been successful in swaying funding in this direction over the last 20 years. She categorized lobbying efforts into direct benefits, distributive changes, and systemic effects. Overall, Best determined that there is a strong relationship between lobbying efforts and funding changes, with those groups, particularly for diseases that specifically effect women (eg, uterine cancer) and the African American population (Sickle-cell Anemia) suffer funding distribution changes because of fewer dedicated lobbyists to these causes. Not wholly surprisingly, diseases thought to be less “morally worthy”, ie, lung cancer, presumed to be caused by smoking, and liver cancer, presumed to be caused by extensive alcohol consumption, have suffered a decrease in research funding over the last two decades.
A previous paper published in 2011 by Hegde and Sampat looked at the funding levels for 955 rare diseases by the NIH from years 1998-2008, ostensibly just the Presidency of George W. Bush (R). The authors found several interesting trends: lobbying by special interest groups representing rare diseases results in a greater expenditure of funding to those specific diseases, but less so in years following a change in the leadership of Appropriations Subcommittee responsible for NIH allocations. Subsequently, how funding is dispersed through NIH is influenced by “soft” earmarks, or those that are influenced by Congressional subcommittees, and not necessarily dictated by wording within legislation. These may be influenced by the preferences of individual Subcommittee members. Finally, the authors conclude that information that informs policy is gathered by information distributed by lobbying groups rather than well-monied interest groups at the cost of the larger public.
Economists have also joined the call to switch from NIH’s current funding model to one that favors more disease-specific and therefore more standardized model of NIH spending. In a paper published in PNAS in 2009, Manton et al. correlate an increase in spending on scientific research on specific diseases to an increase in the national economy. Earlier this year, Bisias, et al published a paper in PloS One entitled “Estimating the NIH Efficient Frontier”, in which they hypothesize that the modern portfolio theory (minimize risk for a given level of expected return by carefully choosing the proportions of various assets) can more closely align the amount of dollars spent on basic research with specific patient outcome.
Undoubtedly, there is much to be gained from studying specific diseases. The economic burden in healthcare costs and lost productivity from major diseases is detailed in a 2003 study by the Millken Institute entitled “An Unhealthy America: The Economic Impact of Chronic Disease”. By all estimates, the cost of healthcare has risen dramatically over the past decade, increasing these estimates proportionally, though spending subsided slightly in 2010. NIH produces an annual list of disease and research categories and the respective amount of funding they receive here. The Center for Responsive Politics publishes the number of lobbying efforts per organization per year here.
The NIH budget is a closed system in that focusing money on one special interest will undoubtedly take money away from other, equally deserving lines of questioning. As scientists, it is important to understand the changing landscape of NIH funding and how that will affect many laboratories and the future of biomedical research. Additionally, it is important to understand that many biotech companies exist to support research into specific diseases, and that we should recognize their value for these reasons. An amount of money dedicated to a specific disease from NIH probably doesn’t represent the total amount of money that is spent research efforts for that disease in any given year.
The important take-away message from these new findings is that your voices are heard! It is crucially important in this uncertain funding climate that scientists lobby hard for increasing the NIH budget for sustained and continued growth!