Readers are well aware that philanthropy is an exercise in benevolence, but also in disparity. In a world where capital is finite, we often hear about funders allocating support to certain types of organizations while others scramble for the scraps.
The Cleveland Clinic’s Suneel Kamath, MD, has been publishing research during the past few years looking at funding disparities in the cancer space. On its face, the premise may sound odd. Where cancer is concerned, any nonprofit support, whether it’s for research, education or treatment, usually lacks the kind of ethical ambiguity we might associate with, say, a multimillion-dollar donation to an elite university. But again, we live in a world of finite resources, and when it comes to cancer, where some forms of the disease are more common and lethal than others, it’s inevitable that ethical calculations will enter the conversation.
In their research, Kamath and two doctors at Northwestern University identified $6 billion in revenues flowing to cancer-related nonprofit organizations (NPOs). However, they also found that the amount of funding earmarked to address specific types of cancer had little correlation with the incidence and mortality rates of those cancers. Colon, endometrial, liver and bile duct, cervical, ovarian, pancreatic and lung cancers were all poorly funded compared to their incidence and mortality rates. Conversely, breast cancer, leukemia, lymphoma and pediatric cancers were all well-funded respective to their relative impact on society.
“We talk about unmet need all the time,” Kamath told me, “and in my view, tumor types, at the basic level, can represent unmet need. And we found that these needs aren’t being met.”
Crunching the data
Kamath and his team accessed the IRS tax records of 119 cancer-related NPOs that had at least $5 million in annual revenue in 2015. Their report, which Northwestern dubbed “the first study to compare nonprofit funding distribution in the United States across cancer types,” went live in 2019. I discovered it a few weeks ago while researching an upcoming Inside Philanthropy white paper on the state of cancer funding.
The researchers found that out of the $5.98 billion in organizations’ combined revenues for the year, $4.59 billion (77%) flowed to “NPOs that support all cancers, and it is unknown which diseases receive this money and in what proportion.” An example of a grantee in that category is the American Cancer Society (ACS). The patient advocacy organization had $576 million in revenue in 2020 and does not focus on a specific kind of cancer. It awards grants for “extramural research,” “patient support” and “transportation assistance,” among other things.
According to its most recent tax records, the ACS only allocated 9% of its operational expenses toward grants to domestic organizations. However, since the ACS is so large, the $51 million in “extramural research grants” it disbursed places it among the ecosystem’s largest funders — but, again, we cannot tell if these grants were earmarked for a specific kind of cancer.
Of the $1.39 billion in revenues researchers identified as earmarked for specific cancers, organizations focused on breast cancer were getting the most money ($460 million), followed by leukemia ($201 million), pediatric cancers ($177 million) and lymphoma ($145 million). The least-funded cancers were liver and bile duct ($5.8 million), cervical ($5.4 million), endometrial ($5.4 million) and sarcoma ($5.1 million).
Researchers then correlated organizations’ annual revenue by cancer type to incidence rates, mortality rates and person-years of life lost (PYLL), with the latter metric taking into account cancers that affect younger individuals, using scatter plots. They concluded that “there is a weak association between increased incidence of a particular cancer type and funding for NPOs supporting that cancer, but essentially no correlation between mortality or PYLL and NPO funding.”
It’s important to remember that the research correlated specific outcomes to organizations’ revenues and not to the total amount of research money they allotted. But as the ACS example illustrates, when an organization has a lot of revenue, it can allocate a substantial amount of research funding. The authors pick up on this point, noting that “increased spending on research funding, patient education, and patient treatment was also highly correlated with higher annual revenue.”
Why the disparities?
Kamath cited a handful of theories to explain these wide funding disparities between cancer types. The first is the “squeaky wheel” theory. Most cancer funding flows to organizations that “raise a lot of money for awareness for those diseases,” Kamath said. These organizations engage in “hope-based messaging,” which can be very effective when a specific type of cancer has a relatively higher cure rate. “When it comes to philanthropy, while it seems, in some cases, like we’re donating to improve outcome, I think what we’re actually doing is donating for an outcome that we already get,” he said.
More awareness leads to more funding, which leads to better outcomes for donors craving impact, which, in turn, leads to more awareness and funding. This can explain why fields like breast cancer and lymphoma are so well-funded compared to pancreatic or colorectal cancer, the latter of which is the second-highest cause of cancer-related deaths and one of the least-funded cancer types. “They are just intrinsically harder diseases,” Kamath said. “You’re going to have a lot of negative outcomes for many years, and it’s going to take a lot of fortitude to stick with it.”
The researchers also pointed to a psychological component that may help explain the funding gaps. The report found that less funding flows to cancers that, in some cases, are caused by “stigmatized behaviors” like smoking (lung), alcohol consumption (liver), intravenous drug use (liver), sex (cervical) and tanning beds (skin). The idea here is that, consciously or otherwise, donors believe that other cancer areas are more worthwhile since the patient’s behavior was unrelated to the diagnosis.
“Bile duct cancer is a great example,” Kamath said. “It’s often lumped with liver cancer, and when people think of liver disease, they automatically think about drinking.” And yet roughly 98% of bile duct cancer cases “are completely random, bad luck events that have nothing to do with drinking,” he said. The study also noted that underfunded cancers involve “embarrassing” body parts. “It’s harder to drum up interest because people can be uncomfortable with talking about these body parts,” Kamath said.
“We’re going to have to earn it”
In commentary published around the time the study went public, Dr. Mona Khanna, who was not affiliated with the research, approached the findings from a demographic angle, noting that if “a cancer occurs in someone of a higher socioeconomic class, it may attract more funding.”
Our own sense of philanthropic support for cancer research bears that out. The cancer research space is replete with millionaire and billionaire donors who either survived a certain kind of cancer or lost a loved one to the disease. One of the many examples that come to mind is Michael Milken. In 1993, doctors diagnosed the financier with advanced-stage prostate cancer and gave him less than two years to live. Following his diagnosis, Milken launched the Prostate Cancer Foundation, which has gone on to raise more than $800 million in support from major donors like billionaire Robert F. Smith. (Milken, it should be noted, turned 76 in July.)
Moreover, some types of cancer research benefit from funding rooted in causes distinct from medical research — while others don’t. Health journalist Liz Highleyman, who was also not affiliated with the study, noted that “a factor not mentioned by the researchers is the fact that breast cancer affects mostly women, so it receives attention and funding from organizations and political entities that support women’s issues — much as HIV/AIDS has received attention and funding from groups that support the LGBT community.”
Since the report’s publication, Kamath has been focusing on similar disparities in federal cancer funding and how these disparities affect Black patients. “We found, unfortunately, that there’s a significant racial disparity involved, as well,” he said. “Diseases that have higher incidence rates among Black patients, in particular, tend to not get as much as much funding.”
For now, it’s incumbent upon underfunded organizations to educate donors about these disparities. But the report’s authors are optimistic on that front. “Some data show that individual donors are largely unaware of which medical causes are well supported and which are underfunded,” they write. “But if informed of these disparities, the public can attempt to compensate for them.” Kamath agrees. “We can get hopeful and realize positive outcomes immediately,” he said, “but for other diseases, we’re going to have to earn it, and that takes time and resources.”