By Daniel Tarade

A few years back, I went to see a retrospective on the art of Canadian painter, David Thauberger. His work is notable for its focus on the everyday buildings of the Canadian prairie. His frontal, geometric depictions of grain elevators, gas stations, and general stores draws on the iconography of postcards and depictions of famous landmarks. Thauberger’s work elevates the status of these otherwise mundane buildings to a level of fame. In doing so, he highlights that fame is arbitrary and perhaps only loosely connected to “objective reality.” To emphasize this point, several paintings of famous landmarks, like Old Faithful, hang alongside his paintings of dance halls and barns. Perhaps both are worthy of our consideration?

Much of our cultural milieu is influenced by the concept of fame. Many of us probably know of a local band, writer, or artist who is truly talented but, for one reason or another, has not been discovered. However, due to fame, as a society, we are all familiar with Kendrick Lamar, Star Wars, and Van Gogh. We are not all so familiar with The Blue Stones, a local band and a mainstay of my music library. Fame, to me, represents a threshold where the attention paid surpasses the attention merited. A second aspect of fame is that it is self-perpetuating. A famous landmark will result in increased infrastructure (think guided tours, surrounding hotels, and available flights) such that it is more convenient to visit said landmark than other sites. A famous movie series will have more advertising and attract more big name celebrities. In all honesty, which movie series or musician entrenches itself as a cultural touchstone does not affect my life all too greatly.  Or which country establishes itself as the next tourist hotspot. However, fame is not limited to entertainment or culture. Despite being marketed as an objective enterprise, scientific communities are equally vulnerable to the bias of fame when it comes to areas of scientific research and the distribution of funds.

To begin dissecting this issue, let’s first look at government funding for various diseases. The National Institute of Health (NIH) operates the largest biomedical research facility in the world and provides over 25 billion dollars of research funding annually. As it is funded by tax payers, research dollars are meant to be allocated in accordance with disease burden (most often measured by healthy years lost to disability or premature death). Despite a mandate to fund disease in accordance to such objective criteria, analysis of NIH funding has found that only a third of the variance in research funding can be attributed to differences in disease burden.[i] In other words, funding for a disease is only weakly correlated to its burden on society. If there is not a perfect correlation between disease burden and research funding, you would expect to find overfunded and underfunded diseases. A disease like acquired immune deficiency syndrome (AIDS), caused by the human immunodeficiency virus (HIV), is overfunded by nearly 2.5 billion dollars, when considering its disease burden. This is not to say that AIDS is not a serious issue but as the most funded disease in the US, AIDS research receives more funding than diabetes, perinatal conditions, and breast cancer combined (2nd, 3rd and 4th most funded diseases, respectively) despite having a disease burden (in the US) akin to asthma. The spread of HIV peaked in 2000 and mortality due to AIDS has decreased since 2004, owing to antiretroviral therapy pioneered in the 90s, which has been able to extend the lifespan of individuals infected with HIV to a length near that of the general population.[ii] Even when looking at global disease burden, AIDS is overfunded – a truly famous disease. Others have also argued that, in addition to receiving excessive research funding, AIDS has also received more than its fair share of health aid, even in Sub-Saharan African, where AIDS is the number one killer.[iii] One proposed reason for this bias towards AIDS relief is that lobbyists and celebrities have championed HIV/AIDS as an exceptional disease. Further, an entire structure has emerged around HIV/AIDS that streamlines the implementation of programs and procuring more funds. HIV/AIDS meets both criteria I have set for fame; it is paid more attention than it merits (in terms of research dollars) and structures in place perpetuate the fame of AIDS and help maintain continued funding.

AIDS may be famous but arguably cancer is not. Although cancer research is well-funded, the disease is such a burden on society, that levels of funding are appropriate. However, funding of different types of cancer suffers from similar biases.[iv] Overfunded and ‘famous’ cancers include leukemia, breast cancer, and prostate cancer. Breast cancer and prostate cancer affect one sex specifically (breast cancer can occur in men but is rare), which has led to a strong push from men’s and women’s charities. Leukemia suffers from a different bias. Amazing progress has been made in treating and curing certain types of leukemia. It is speculated that these past successes have motivated and inspired a second wave of researchers who are attempting to take up the mantle, despite fewer gains to be had in studying leukemia than say pancreatic cancer, where little progress has been made. On the other side of the ledger, cancers that are underfunded feature those of the stomach, uterine track, and bladder. One trend noticed among underfunded cancers is that they tend to fall victim to a “blame the victim” mentality, where lung cancer, liver cancer, and oral cancer are all underfunded and are associated with lifestyle choices – smoking, alcohol, and chewing tobacco, respectively. With these cancers, it is tempting simply to focus on cost-effective strategies that aim to mitigate consumption of alcohol or tobacco.  Similarly, diseases associated with mental health or substance abuse tend be underfunded. Depression was found to be underfunded by half a billion dollars, the most underfunded disease in America.

Government funding is biased. As mentioned, there are several biases at play, including previous research successes, a “blame the victim” mentality, and lobbying by charities and celebrities. It is the latter bias that most interests me. In 2014, much ink was spilt writing about the ice bucket challenge, a viral charity campaign that raised funds and awareness for Amyotrophic Lateral Sclerosis (ALS), a disease characterized by the progressive loss of motor neurons resulting in respiratory failure typically within two to four years. A truly horrible disease that is thankfully quite rare – roughly 2 people per 100, 000 are diagnosed each year in the western world. With such a rare disease, ALS has most certainly become a famous disease, where charity dollars are not proportional to societal burden. The same goes for breast cancer and prostate cancer, already discussed as overfunded at the government level, potentially due to lobbying by charities and high public awareness. The Pink Ribbon campaign and the Movember campaign (focuses on Men’s health including a focus on prostate cancer, although they are now making a push for mental health research) have become ubiquitous in their own right and have done much to establish breast cancer and prostate cancer as famous diseases, now the two most funded cancers in America. With fame comes more awareness and increased means for garnering more donations – a positive feedback loop.

It is perhaps easier to accept that culture, entertainment, and travel are dominated by the concept of fame. However, the scientific establishment is often viewed as existing above such biases. However, fame also plays a role in the funding of scientific research. It is clear that certain diseases command much more funding than appears justified on the basis of their disease burden. In some instances, like breast and prostate cancer, and HIV/AIDS, some level of fame appears attributable to lobbying and awareness campaigns run by charity groups. For the same seemingly arbitrary reasons that a previously unknown person can become a household name, a disease itself can become famous. Once a disease establishes such a foothold, it can be hard to relinquish.  

Postscript on funding for HIV/AIDS

Although, it has been argued that HIV/AIDS receives more than its fair share of aid and researching funding, others have argued that it is not enough to comprehensively combat the disease.[v] This argument highlights the lack of funds for combating disease in general, where HIV/AIDS, like other diseases, could be better dealt with if more money was available. However, HIV/AIDS is overfunded when considering current funding levels. I, for one, appreciate the argument for more funding across the board. 

Others have suggested that high levels of funding for HIV/AIDS may be linked to past successes in combating other infectious disease (think small pox, polio, etc), an argument reminiscent of increased funding for leukemia.

[i] Gillum et al. (2011). NIH Disease Funding Levels and Burden of Disease. PLoS ONE, 6(2): e16837.

[ii] Becerra et al. (2016). Recent Insights into the HIV/AIDS Pandemic. Microbial cell, 3(9), 451-475.

[iii] England. (2007). Are we spending too much on HIV? Yes. British Medical Journal, 334, 344.

[iv] Carter & Nguyen. (2012). A comparison of cancer burden and research spending reveals discrepancies in the distribution of research funding. BMC Public Health, 12(526), 1-12.

[v] de Lay et al. (2017). Are we spending too much on HIV? No. British Medical Journal, 334, 345.