What’s worth curing? An investigation into the allocation of research funding

by Julia Hukowich, Contributing Writer

It’s obvious that we would be nowhere in modern medicine without spending billions of dollars each year to fund biomedical research. We wouldn’t have our diverse lineup of blood pressure medications, our cocktails of antibiotics, or our life-saving dialysis machines. Research funding can come from all sorts of places, including governments and non-profit organizations. However, not all health issues are funded equally.

We can have spending without solutions, noting Alzheimer’s disease as a prime example. In 2020 alone, the NIH spent over $2.6 million on Alzheimer’s disease research, yet despite over 100 years of research, there is still no concrete pathological understanding and no real solution (1). With that said, we can’t have any solutions without spending. So, what determines the allocation of research funding? Is it the prevalence or mortality of the disease? Is it how much the public advocates for it? Consequently, how do we decide which diseases are worth curing?

Let’s take a closer look at cancer research and the different funding allocations of cancer subtypes. In 2019, the Canadian Cancer Society spent $14.3 million in funding for breast cancer research, but only $2.8 million for lung cancer. Despite this huge discrepancy in financing, the incidence of these cancers is roughly the same: in 2021, an estimated 27,700 women were diagnosed with breast cancer, and 29,600 people with lung cancer. However, the death rate for lung cancer is around double that of breast cancer, and lung cancer patients are three times less likely to survive five-years after their diagnosis than breast cancer patients (2,3). When comparing these two cancer subtypes, there is similar incidence, but markedly different funding, and perhaps non-coincidentally, very different survival. What tipped the balance in favour of funding breast cancer research in the first place? The answer is public advocacy, opinion, and awareness.

This NBC article highlights that breast cancer is the “queen” of all cancer charities, noting that the top breast cancer charities in the U.S. bring in hundreds of millions of dollars in annual revenue cumulatively, due in large part to the powerful lobbying efforts of breast cancer advocacy groups. Breast cancer charities also receive funding from large corporate donors since this cause is said to provide a “veneer of altruism” and improve public image. Yet, other prevalent health issues lacking this certain attractiveness such as diarrhea, influenza, and lung cancer don’t benefit from the same surges in funding. As the author writes, we wouldn’t have a “10K run for urinary incontinence” (4). Essentially, if advocacy groups or corporations have the resources and money to spend, they can heavily influence progress in the disease of their choosing, and consequently, may restrict progress in some other areas. Money can’t buy happiness, as the saying goes, but it can buy high-tech lab equipment and sway highly skilled scientists to focus their efforts one way or another.

A study published in the American Sociological Review found a clear relationship between advocacy and funding, as well as between mortality and funding – what they call “dollars per death.” However, mortality stops dictating funding when it comes to stigmatized, “self-inflicted” diseases like lung cancer (still, let’s not forget that people do get lung cancer without ever having smoked). When given the choice between fighting a disease brought on by uncontrollable malfortune versus one brought on by poor life choices, donors and decision makers would naturally go with the former, no matter how deadly the latter may be. Public opinion on “worthiness” seems to make a huge difference, because they found that with each $1,000 spent on lobbying, there was an associated $25,000 increase in research funds the following year (5).

We’ve also seen the impact of public awareness on research when public health concerns take over the media. In the 1980s, the HIV/AIDS epidemic took the lives of tens of thousands of people in the U.S. alone, and millions more worldwide. In 1983, the National Institute of Health spent $21.7 million on AIDS research. By the end of the decade, they were spending an enormous $740.5 million, and as a result, developed antiretroviral therapies that started allowing HIV-positive individuals to live full and healthy lives (6,7). Plus, living through the COVID-19 pandemic today, we watched as governments poured money into research institutions and pharmaceutical companies to speed up the development of diagnostics, treatments, and of course, preventative vaccines for COVID-19. We saw the world come together to develop the fastest vaccines in history. Imagine if this sort of effort were brought to every disease – who knows what healthcare might look like!

Obviously money doesn’t grow on trees: governments, non-profit organizations, and donors cannot provide infinite funding to all research areas, and have to make decisions. Based on this investigation, it is heartening to see that when issues become very pervasive, like in the case of breast cancer, HIV/AIDS, and Alzheimer’s, governments and research institutions respond by allocating funding accordingly. However, it is also very evident that social biases and prevalence of a disease also play into these responses, no matter how poor that prognosis may be. I think this applies not just to funding of medical research, but to funding of anything – humanitarian aid, conservation of endangered species, efforts to combat climate change, and more. The general public may not have the same expertise as scientists, but their role in curing diseases may be more important than you might think. 

Edited by Autumn Pereira

References:

  1. National Institute of Health. (2021, June 25). Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). Research Portfolio Online Reporting Tools. https://report.nih.gov/funding/categorical-spending#/  
  2. Canadian Cancer Society. (n.d.). Breast cancer statistics. https://cancer.ca/en/cancer-information/cancer-types/breast/statistics
  3. Canadian Cancer Society. (n.d.). Lung cancer statistics. https://cancer.ca/en/cancer-information/cancer-types/lung/statistics
  4. Brian, A. (2008, October 22). The politics behind the pink ribbon. NBC. https://www.nbcnews.com/health/health-news/politics-behind-pink-ribbon-flna1c9467195
  5. Best, R. K. (2012). Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy. American Sociological Review, 77(5), 780-803. https://doi.org/10.1177/0003122412458509
  6. Institute of Medicine (US) Committee to Study the AIDS Research Program of the National Institutes of Health. (1991). The AIDS Research Program of the National Institutes of Health. National Academies Press (US).
  7. Watson, S. (2020, June 9). The History of HIV Treatment: Antiretroviral Therapy and More. WebMD. https://www.webmd.com/hiv-aids/hiv-treatment-history

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