Better Research Funding Practices Are Needed to Mitigate Disparities in Cancer Incidence and Mortality

Funding is often the driving force behind treatment advancing clinical trial opportunities in oncology. However, funding disparities can hinder certain populations’ access to these opportunities, according to Suneel Kamath, MD. For Black patients and other populations with higher rates of incidence and mortality, funding gaps may serve to exacerbate preexisting disparities.

“An understudied area of health disparities in oncology is how we fund cancer research,” Kamath said. “The project I was involved in looked at both federal government funding and nonprofit patient advocacy group funding to see [if these areas of funding] align well with how common or how serious or how deadly certain cancers are in the United States.”

In an interview with Oncology Nursing News®, Kamath, an assistant professor of medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, discussed the findings from research he conducted evaluating the effect of financial and racial disparities on cancer incidence and mortality. He highlighted issues apparent in the funding patterns of both the National Cancer Institute (NCI) and nonprofit advocacy groups and emphasized ways to facilitate a more comprehensive allocation of resources going forward.

ONN: What steps did you take to investigate how funding disparities affect cancer incidence and mortality rates?

Kamath: I found all nonprofit groups that fund cancer research and earned at least $5 million in revenue per year. It took a long time to identify all of those and then sift through their tax records and [other annual financial records] to see their generated revenue. I then classified this revenue by the disease type [it funded]. NCI funding, fortunately, is already divided by disease type.

I compared this funding information with known statistics about how common the incidence of each cancer is, as well as the mortality rates for those cancer types. I was looking to see: [Does a lack of funding] line up with incidence and mortality?

What were the main findings from this research?

[This research uncovered] many surprising findings. The biggest results I found were that cancer research funding, both from nonprofits and from the NCI, did somewhat correlate with the cancer incidences but correlated poorly with mortality rates. Basically, the cancers that cause a large number of deaths per year are actually the least funded, which is surprising and quite backwards. The diseases in which we’re making the least progress, the ones from which the most deaths are occurring, should be our main focus, but I found the opposite to be true.

Another factor I found as well, unfortunately, was that this is a source of racial disparities. I found that cancers that had a higher incidence rate among Black patients were underfunded.

These are all surprising results. Fortunately, they are ones we can likely address with more awareness.

What next steps are you hoping to take with this research?

First, I’d like to increase the number of years that [we can study these data from]. Another important aspect of this research is getting data from pharmaceutical companies as well. They’re a big source of funding for cancer research, and I want to see if there are patterns similar to what we’ve already seen with where pharmaceutical companies are making their investments. That’s a critical piece of this picture that I’m working to add.

Importantly, I’m also trying to work with a number of our leaders in Congress, within the American Society of Clinical Oncology, and in other advocacy organizations to raise awareness about these disparities, because if people were more aware of them, we could work to better rectify them. This is a big aspect of health equity that’s not talked about as much as it should be.

Based on this research, what steps can everyday oncologists and community physicians take to ensure they’re helping close these gaps?

We as physicians are often not involved in the political process as much as we should be. Engaging more with your state and national advocacy organizations is an important step to take. If you treat a certain disease, partner with these groups. I’ve found that in diseases from colorectal cancer to cholangiocarcinoma, the patient advocates in these organizations are very willing and very interested to work with us.

Reach out to somebody in those organizations to get connected. Often, you’ll find you may get connected with people at a high level in our government, the ones who control the purse strings for these decisions.

What is the importance of including underrepresented groups in clinical trials?

We’ve found that if members of a community are the voice of that issue, [they can have a greater effect on its outcomes]. It’s important for more patients in underrepresented communities to be involved in clinical trials and connected with cancer advocacy groups. Many of the patients in those trials are the ones who benefit the most and also the ones who are most interested in advocating for interest in their diseases.

[Clinical trials are] an excellent avenue if we can get more participation in them. [These trials can also lead to] more advocacy for those diseases, [if patients tell their peers how they’ve benefited from participating in research and recommend they do the same].

What is the main message from this research that you want colleagues to know?

Opposite to what most of us would expect, cancers that cause the highest burden on our society, both in terms of mortality rate and incidence, have the least advocacy efforts and the least funding. [We need to] try to rectify that.

Many of us make donations here or there throughout the year. When we help fund organizations, we should think about which diseases are not in the press as much that are not getting much funding and target our donations there. This small grassroots effort can make a big difference.

What other data regarding clinical trial disparities did you find through this research?

A finding we expected to see was that underfunded diseases also have far fewer ongoing clinical trials. This is why cancers that have high mortality rates continue to have those rates. If we don’t fund new research for them, they’ll still have the same results.

Interestingly, this was also true even when just looking at the advocacy organizations, which partly fund research but also do many other things. Even though the main focus of advocacy groups isn’t necessarily funding trials, that correlation is still strong. This evidence speaks to the importance of channeling our efforts into advocacy, because they greatly influence where government dollars and pharmaceutical dollars go.