Illness is expensive, and we spend huge amounts combatting disease, starting in the laboratory. The National Institutes of Health (NIH) is the largest funder of biomedical research in the world; its 2006 annual budget was $28.5 billion3. Yet, despite the staggering sum it and other organizations of its ilk dole out, money is still tight. The fierce competition for research funding has given rise to specialized disease advocacy groups that have reshaped the landscape of medical research, especially in the United States.
Allocating research funds isn’t as intuitive as it appears, and the money doesn’t always go where you’d think. Diseases that get the most funding aren’t necessarily those that kill the most people, or even those that infect the most. While disease burden, the cost of a disease in terms of both economics and mortality, is roughly related to the amount of funding a disease receives, both in the US and abroad, many diseases are underfunded or overfunded based on their impact2,3,4,6,7. For example, nearly a quarter of NIH funding (24.3%) in 2004 went to AIDS research. AIDS received about $2.9 billion, far outstripping the next highest, diabetes, at a little more than $1 billion. However, although AIDS research got the greatest amount of funding, it is the 16th most common cause of death in North America; the number one cause of death, ischemic heart disease, was allocated only 3.3% ($398 million) of NIH funds3.
The squeaky wheel
Breast cancer could be the poster disease for the fluctuations and fickleness of funding and the importance of advocacy. Breast cancer awareness and advocacy started in earnest in the 1970s, and was quickly linked with women’s liberation. Though it appears tame now, early breast cancer advocates were breaking cultural taboos against discussing cancer and breasts in public, and successfully harnessed the power of the sexual revolution to call attention to the disease. By the 1980s, breast cancer advocacy had become professional, with sustained lobbying, fundraising and publicity efforts, creating the first modern disease advocacy movement. Yet as recently as 1989, the US allocated only $74.5 million to breast cancer, less than 5% of what was spent on AIDS research, which, at the time, killed half as many people per year in the US. In response, breast cancer advocates marshaled a huge grassroots movement, gathering 2.6 million signatures in support of the National Action Plan on Breast Cancer in 19935.
Their decades of hard work have paid off. In 2004, breast cancer was the fourth most highly funded area of disease research in the US, with $718 million in NIH funding3. In fact, they may have been too successful. There is now concern that the disease may be overfunded, relative to other more lethal cancers2,5; for example, 85% of those with breast cancer will survive, while 85% of those with lung cancer will not. Despite this tension, the breast cancer movement has clearly demonstrated the power of professional advocates effectively wielding data, visibility and celebrity, and has become a model for disease advocacy internationally5.
Gets the grease
Single disease interest groups became a force in American politics in the 1980s and 1990s, with the number of large non-profits focusing on disease doubling in the 1990s alone. Their influence has radically changed disease research funding, not only for the patients they represent, but also for all those suffering from illness. In their wake, patients have become viewed as the primary beneficiaries of research funding (as opposed to researchers or the public), and their moral worthiness as recipients has become increasingly important in funding decisions. The emergence of powerful disease interest groups has also started an advocacy arms race; greater lobbying budgets mean greater research funding. Every $1,000 spent on lobbying is associated with a $25,000 increase in research funds the following year. Patients without advocates are increasingly being outstripped in the competition for funding, potentially leaving the traditionally marginalized more vulnerable than ever1.
Advocacy groups have become an essential part of medical research funding, and they have been massively successful in shaping government funding priorities. Yet they also present a challenge, creating a chorus of demands that can make it even more difficult for overlooked groups to be heard. Amidst the clamor and all the slicing and dicing, it’s important to remember that there is only one pie and everyone wants a piece.
- Best, R.K. (2012). Disease politics and medical research funding: three ways advocacy shapes policy. American Sociological Review, 77:780-803.
- Carter, A.J.R., & C.N. Nguyen. (2012). A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding. BMC Public Health, 12:526.
- Gillum, L.A., C. Gouveia, E.R. Dorsey, M. Pletcher, C.D. Mathers, C.E. McCulloch, & S.C. Johnston. (2011). NIH disease funding levels and burden of disease. PLoS One, 6:e16837.
- Lamarre-Cliché, M., A.M. Castilloux, & J. LeLorier. (2001). Association between the burden of disease and research funding by the Medical Research Council of Canada and the National Institutes of Health. A cross-sectional study. Clinical & Investigative Medicine, 24:83-89.
- Lerner, B.H. (2002). Breast cancer activism: past lessons, future directions. Nature Reviews, 2:225-230.
- Luengo-Fernandez, R., J. Leal, & A.M. Gray. (2012). UK research expenditure on dementia, heart disease, and cancer: are levels of spending related to disease burden? European Journal of Neurology, 19:149-154.
- Xu, G., Z. Zhang, Q. Lv, Y. Li, R. Ye, Y. Xiong, Y. Jiang, & X. Liu. (2014). NSFC health research funding and burden of disease in China. PLoS One, 9:e111458.
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