Cancer not only affects each person differently, but it can also affect different communities overall in different ways. Cancer is not “one-size-fits-all” and neither are its treatments, especially when it comes to immunotherapy. So how do we help more people overcome cancer?
As immunotherapy makes further inroads into routine cancer care, more information becomes available to scientists who study the effects of immunotherapy in larger patient populations. This information is revealing that individual patient immune responses are sometimes influenced by genetic and lifestyle factors that can affect entire ethnic and racial groups uniquely. These insights have prompted the medical research community to call for greater diversity among clinical trial participants and that clinical studies proactively recruit and account for diversity in race, ethnicity, gender, age, health status, economic status, sexual orientation, and history of health care – to name only some of the factors that can influence treatment outcomes – so that a more complete picture of treatment effectiveness is obtained that can better inform how doctors customize treatment plans to individual patients.
Last year, the Cancer Research Institute affirmed its commitment to diversity, equity, and inclusion in the academic sciences and healthcare and announced several new initiatives that aim to increase health literacy among diverse populations, with special focus on Spanish-speaking Latino and Hispanic patient and caregiver communities in the U.S. These include the translation of CRI’s patient information website pages into Spanish as well as hosting the first all-Spanish language CRI Virtual Immunotherapy Patient Summit, which included an informative session devoted to overcoming racial and ethnic disparities in access to health information and care. CRI also funded programs that provide opportunities to scientists and aspiring scientists from communities that are underrepresented in the academic fields, including adding a diversity track to CRI’s longstanding postdoctoral fellowship program and supporting cancer center partner programs designed to recruit graduate students from Black, Hispanic, and other underrepresented communities to career trajectories in tumor immunology.
During the 2021 CRI Spanish-language summit panel discussion on disparities that specifically affect Hispanic and Latino, Spanish-speaking communities in the U.S., Dr. Narjust Duma (now Florez) of the Lowe Center for Thoracic Oncology at the Dana-Farber Cancer Institute joined Dr. Ana María López of the Sidney Kimmel Cancer Center and Thomas Jefferson University Hospitals and Dr. Estelamari Rodríguez of the Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine, to discuss critical access issues that affect not only Hispanic or Latino, Spanish-speaking patients and caregivers but also those from other communities.
“We can see a lack of inclusion of minorities, women, and older adults in oncology clinical trials and, compared to twelve years ago, we are doing worse now regarding the recruitment of Black and Hispanic patients to trials for the seven most prevalent cancers,” Dr. Florez shared in a recent interview with CRI. Additionally, Dr. Florez said the consequences of not having more inclusive cohorts for clinical trials can last for years, since the FDA takes about five to ten years to approve cancer treatments. “Efficacy for a patient outside of the majority group represented in clinical trials (that is to say, for the most part, white and male patients in U.S. oncology trials) is hard to determine if there are not more patients from underserved demographics,” Florez added.
The lack of diversity in clinical trials can have real-world consequences for patients. “If a drug is approved based on clinical trials that over-represent one segment of the population, this can be detrimental to the treatment of those outside of that population.”
CRI Director of the Scientific Advisory Council and 2018 Nobel Laureate Dr. James P. Allison agrees that more effort must be made to involve all people in cancer research.
“Facilitating diversity in the sciences is absolutely critical because only by bringing in all of the best and brightest minds from our society can we solve the complex questions in cancer research that lie before us,” Dr. Allison said in June 2021.
Where Dr. Florez cites a need for diversity among clinical trial participants, Dr. Allison has expressed the need for diversity among doctors and scientists who facilitate clinical trials and cancer immunotherapy research. Seeing a doctor that looks like you or speaks your language can go far to build trust that individual voices – and community voices – are being heard.
Scientific experts aren’t the only ones speaking out about the need to diversify clinical trial patient populations. Karen Peterson, a survivor of triple-negative breast cancer who responded to immunotherapy and who today is a CRI ImmunoAdvocate, moderated a discussion about disparities in cancer care with fellow patients during the 2021 CRI Immunotherapy Patient Summit.
“You can start really locally based. You can start in the churches. You can start with those grassroots organizations pairing up with other like-minded groups who are trying to get the message out there about rare cancers, about health equity, about disparities, about access to quality health care, then identify those groups and go after them and pair up with them,” Peterson said during the discussion. “There are opportunities for more cancer researchers of color to run clinical trials and become principal investigators. It’s important to fund these growing young scientists [of color] who are awaiting a chance to represent the community, even to come back home and treat the communities they grew up with.”
Peterson’s work to advance patient access to clinical trials through her group, karensclub.org, addresses half the problem. It’s one thing to ask patients and their families to study up on clinical trials, but doctors have responsibility, too, for making their patients aware of all their treatment options. Self-advocacy, Peterson shared, might involve looking beyond your primary care team and getting a second opinion, especially regarding clinical trials and the relatively new field of cancer immunotherapy.
During a recent major cancer conference held in the U.S., cancer patient advocate and clinical trial participant Stephanie Walker shared results from the BECOME Research Project (Black Experience of Clinical trial and Opportunities for Meaningful Engagement) showing that only 40 percent of Black women with metastatic breast cancer said that they were offered a spot in a clinical trial after their diagnosis. More than 80 percent, however, said that they would have participated in a clinical trial if given the chance. A STAT news article published earlier this month details the discrepancy that Black cancer patients experience when it comes to being considered for clinical trials. The study points out that clinicians and scientists should recognize both the individual and structural biases that hinder greater representation of the Black community in clinical trials.
These biases are not lost on members of underrepresented groups. Walker, a Black breast cancer survivor, worked with a team from the Metastatic Breast Cancer Alliance and surveyed over 400 cancer patients who had participated in clinical trials. Approximately one-quarter of the respondents self-identified as Black. Only 71 percent of the Black respondents expressed trust in clinical research, compared to 91 percent of white respondents. Furthermore, less than one-third of Black respondents believed that people of all races and ethnicities experienced fair treatment in clinical trials, compared to 56 percent of white respondents.
Given the lack of representation in cancer trials among specific racial and ethnic cancer patient communities, underrepresentation in the scientific community, and mistrust around receiving equitable cancer treatment, there is a lot of work to do when it comes to addressing disparities in cancer research and care. The Cancer Research Institute will continue to work to address these disparities that hinder scientific progress, and will continue to create platforms for its diverse community of scientists and patients to share their firsthand experiences at the forefront of cancer research and immunotherapy.