Funding is often the driving force behind treatment to advance clinical trial opportunities in oncology. However, disparities in funding may hinder some populations’ access to these opportunities, according to Suneel Kamath, MD. For black patients and other populations with higher incidence and mortality rates, funding gaps can serve to exacerbate pre-existing 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 funding for nonprofit patient advocacy groups to see [if these areas of funding] correlate well with the frequency, severity, or death of certain cancers in the United States.
In an interview with Oncology Nursing News®, Kamath, assistant professor of medicine at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University, discussed the results of research he conducted to assess the effect of financial and racial disparities on cancer incidence. and mortality. He highlighted apparent problems in the funding models of the National Cancer Institute (NCI) and nonprofit advocacy groups and outlined ways to facilitate a more comprehensive allocation of resources in the future.
WE : What steps have you taken to study how funding disparities affect cancer incidence and mortality rates?
Kamath: I found all non-profit groups that fund cancer research and earn at least $5 million in revenue per year. It took a long time to identify all these people and then sift through their tax records and [other annual financial records] to see their generated revenue. I then classified these incomes by type of disease [it funded]. NCI funding, fortunately, is already divided by disease type.
I compared this funding information with known statistics on the frequency of incidence of each cancer, as well as the mortality rates for these types of cancer. I was looking to see: [Does a lack of funding] align with incidence and mortality?
What were the main results of this research?
[This research uncovered] several surprising discoveries. The most important findings I found were that cancer research funding, both by nonprofits and by the NCI, was somewhat correlated with cancer incidence, but weakly correlated 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 retrograde. The diseases in which we make the least progress, the ones that cause the most deaths, should be our main focus, but I have found the opposite to be true.
Another factor that I also found, unfortunately, is that it is a source of racial disparities. I found that cancers that had a higher incidence rate in black patients were underfunded.
These are all surprising results. Fortunately, these are the ones we can probably approach with more awareness.
What next steps do you hope to take with this research?
First, I would like to increase the number of years that [we can study these data from]. Another important aspect of this research is also to obtain data from pharmaceutical companies. They are a major source of funding for cancer research, and I want to see if there are similar patterns to what we have already seen with where pharmaceutical companies are making their investments. It is an essential element of this image that I am working to add.
Crucially, I’m also trying to work with a number of our leaders in Congress, in the American Society of Clinical Oncology, and other advocacy organizations to raise awareness of these disparities, because if people were more aware, we could work to better rectify them. This is an important aspect of health equity that is not talked about as much as it should be.
Based on this research, what steps can oncologists and everyday community physicians take to ensure they are helping to close these gaps?
As doctors, we often don’t participate in the political process as much as we should. Engaging more with your state and national advocacy organizations is an important step to take. If you are dealing with a certain disease, join these groups. I have found that in diseases ranging from colorectal cancer to cholangiocarcinoma, patient advocates in these organizations are very willing and interested in working with us.
Contact someone from these organizations to get connected. Often you will find that you can come into contact with people at a high level in our government, those who control the purse strings for these decisions.
How important is including underrepresented groups in clinical trials?
We have found that if members of a community are the voice of this issue, [they can have a greater effect on its outcomes]. It is important that more patients from underrepresented communities participate in clinical trials and are connected to cancer advocacy groups. Many of the patients in these trials are those who benefit the most and also those who are most interested in advocating for their diseases.
[Clinical trials are] a great avenue if we can get more participation. [These trials can also lead to] more advocacy for these 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 of this research that you want your colleagues to know?
Contrary to what most of us would expect, the cancers that cause the greatest burden to our society, both in terms of mortality rate and incidence, receive the least effort. advocacy and at least funding. [We need to] try to rectify that.
Many of us make donations here and there throughout the year. When we help fund organizations, we should think about diseases that aren’t in the news as much and don’t get a lot of funding and target our donations there. This little grassroots effort can make a big difference.
What other data regarding clinical trial disparities did you find through this search?
One finding we expected to see was that underfunded diseases also have far fewer ongoing clinical trials. This is why cancers that have high death rates continue to have those rates. If we don’t fund new research for them, they will always get the same results.
Interestingly, this was also true even looking only at advocacy organizations, which partly fund research but also do many other things. Even if the main goal of advocacy groups is not necessarily to fund trials, this correlation is still strong. This evidence speaks to the importance of channeling our efforts into advocacy, as it greatly influences where government and pharmaceutical money goes.