Disease Research Funding: Slicing and Dicing

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.

research funding
Strength in numbers.

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.


  1. Best, R.K. (2012). Disease politics and medical research funding: three ways advocacy shapes policy. American Sociological Review, 77:780-803.
  1. 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.
  1. 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.
  1. 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.
  1. Lerner, B.H. (2002). Breast cancer activism: past lessons, future directions. Nature Reviews, 2:225-230.
  1. 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.
  1. 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.

Image source: Creative Commons, https://www.flickr.com/photos/usaghumphreys/15433169855/sizes/l

Cancer: The Big C

Aliases: cancer

Cancer is an obvious choice for this month’s theme (economics); its costs are so great, they almost need no introduction. As the second leading cause of death in the US1, it has touched the lives of nearly every American. Obviously, the cost of cancer is incalculably high for the patient, but it does not stop there. The painful challenge of this disease extends outward, from family and friends to the medical professionals charged with combatting it.

While the emotional toll on doctors and nurses that work with cancer patients is impossible to measure, there are other, more quantifiable costs associated with their work. One is malpractice. Radiologists, who use imaging technologies (i.e. X-ray) to diagnose and treat illnesses such as cancer, have a high rate of malpractice claims, both in the US and abroad, and it’s increasing. This leap in litigation reflects both the inherent difficulties of radiology, and the rise in its use5. The majority of these suits are related to cancer cases; in Italy, over half of the diagnostic radiology claims between 1993 and 2005 concerned breast cancers and mammographic technique. The predicted rate of litigation against Italian radiologists is 10.5/1,000, which amounts to 1 claim per radiologists per 10 years of work4.

One survey of radiologists across three American states found that about half had a previous malpractice claim. The same study showed that malpractice suits have a negative psychological impact on the doctors involved; about 81% of respondents described the claim as very or extremely stressful. Nearly 1/3 (35.3%) had considered withdrawing from mammogram interpretation entirely because of malpractice concerns. The effects of these experiences spilled over into their practice. More than ¾ (76.4%) were concerned about the impact of claims on mammography practice, and over half (58.5%) indicated that their concern moderately to greatly increased their recommendations for breast biopsies (sampling cells or tissues), a more invasive diagnostic procedure. Yet, their fears may be overblown: the responding radiologists’ estimate of their future malpractice risk was much higher than the actual historical risk. And there doesn’t seem to be a downside for patients, as medical malpractice experience and concerns were not associated greater false-positive rates in cancer diagnosis3. Nonetheless, malpractice claims add another cost to cancer’s tally: the price of human error.

To err is human.

Cause: Although we think of cancer as one illness, it is really a category of ailment that encompasses a whole suite of diseases. But while there are a wide range of cancers, the fundamentals are the same. Cancer is caused by the development of uncontrollably dividing cells that can infiltrate and destroy normal body tissue. These abnormal cells are caused by a DNA mutation, which can be genetic (inherited), stimulated by the environmental (i.e. smoking or radiation), or a combination of the two. Cancer can spread throughout the body, but it takes time to develop, which is why most people are diagnosed after age 651. Men are most commonly affected by prostate cancer (128.3/10,000 men contract it), breast cancer is the most common type in women (122/10,000), and lung cancer has the highest fatality rate in both men (57.9/10,000) and women (37/10,000)2.

Consequence: Because there are so many forms of cancer, there are myriad symptoms, and they largely depend on the part of the body that is affected. Many are also symptoms of other less serious conditions. Some common symptoms include: a lump or area of thickening that can be felt under the skin, unexplained weight change, skin change, persistent cough, unexplained muscle or joint pain, fevers or night sweats, or indigestion or discomfort after eating1.

Cure: While there is no hard and fast cure, there are extensive treatment options. Treatments can be broken down into three types: primary (treatments that remove or kill cancer cells, i.e. surgery), adjuvant (treatments that kill cancer cells that might remain after primary treatment; i.e. chemotherapy or radiation), and palliative (treatments that relieve the side effects of other treatments or the cancer itself). Treatment options include surgery, chemotherapy (which uses drugs to kill cancerous cells), radiation therapy (which uses radiation, such as X-rays, to target cancerous cells), and hormone therapy, among others. Unfortunately, many cancer treatments have significant side effects, including: pain, fatigue, nausea, weight loss, diarrhea or constipation, and neurological or hormonal changes or issues. Palliative treatments include alternative medicine options, such as acupuncture or massage, which may offer some relief. As ever, prevention is key, and there are an abundance of screenings tests for cancer, ranging from physical to imaging to biopsy1.


  1. Cancer. Mayo Clinic. 2 January 2014. Web. 12 April 2015.
  1. Cancer prevention and control. Centers for Disease Control and Prevention. 6 April 2015. Web. 12 April 2015.
  1. Elmore, J.G., W.E. Barlow, G.R. Cutter, C.J. D’Orsi, R.E. Hendrick, L.A. Abraham, J.S. Fosse, & P.A. Carney. 2005. Does litigation influence medical practice? The influence of community radiologists’ medical malpractice perceptions and experience on screening mammography. Radiology, 236:37-46.
  1. Fileni, A., N. Magnavita, & L. Pescarini. 2009. Analysis of malpractice claims in mammography: a complex issue. La Radiologia Medica, 114:636-644.
  1. Magnavita, N., A. Fileni, P. Mirk, G. Magnavita, S. Ricci, & A. Cotroneo. 2013. Malpractice claims in interventional radiology: frequency, characteristics and protective measures. La Radiologia Medica, 118:504-517.

Image source: Creative Commons, http://www.bbc.com/news/health-29920157