As the nation continues to contend with racism and racial inequities, a panel of experts from academia, government, industry, and the patient advocacy community had an open discussion about discrimination and inequality in cancer research and treatment during the AACR Virtual Annual Meeting II.
"Today, we will dig into issues about which we have kept quiet for way too long, because it was too difficult or too painful to talk about them," noted AACR President Antoni Ribas, MD, PhD, FAACR, during his opening remarks.
"As an organization focused on the conquest of cancer, whose core values include equality, diversity, and inclusion, the AACR is fully committed to taking on a much bigger role in confronting and combating systemic racism and racial inequalities," he noted. "For example, African Americans, Latinos, and Native Americans are persistently underrepresented in training programs, and especially in senior faculty and leadership positions in academia, government, and industry. Further, racial and ethnic minorities continue to experience health care inequalities, including a disproportionate burden of cancer, and they are underrepresented in cancer research studies and clinical trials.
"Therefore, we hope to stimulate an open and frank discussion about the current state of affairs in our field, which will help guide the various steps and initiatives that the AACR can take to advance social justice and eliminate racial inequality in all forms," Ribas emphasized. "AACR is dedicated and stands ready to take the necessary actions to change this unacceptable picture and achieve positive change now for the benefit of current and future generations."
Gaps in Representation
Leadership across institutions must work together to ensure these issues are addressed and real change is made. This includes making sure all voices have equal representation in every area of cancer research.
Hannah Valantine, MD, MRCP, Chief Officer of Scientific Workforce Diversity and Senior Investigator at the National Institutes of Health (NIH), discussed how her organization is working to address the lack of diversity, especially in faculty positions.
"I was really touched by the article from the editor of Science, Holden Thorp, who urged us to look in the mirror. And what that meant to me is that this racism exists everywhere, including science," she shared. "And in looking in the mirror, I began to reflect on the programs that we have, and to the extent that we can be even more successful."
The NIH is committed to increasing diversity at all levels. For instance, the Maximizing Opportunities for Scientific and Academic Independent Careers (MOSAIC) program is designed to facilitate the transition of postdoctoral researchers from diverse backgrounds into independent faculty careers.
Valantine noted that discrepancies exist when it comes to the funding rates for African-American scientists compared to others. "Now I have some good news," she began. "And I think we must always speak to this issue with some hope. If we continue to speak with a despair that all of us are feeling this week, I don't see how any of our black trainees will join us in this work.
"[For the Career Development awards], the funding gap for black scientists has been completely eliminated, but the numbers are small. So, what we need is to have more people come into the pathway as well," she said. "The final elephant in the room is the RO1. We are narrowing the gap but not nearly as much, and what this recent turn of events has done is to get NIH together to look very squarely at what we need to do to rapidly change that gap."
Another area that needs further attention is how to increase enrollment of minorities in clinical trials. Over the last several years, there has been a decrease in the proportion of U.S. patients involved in clinical trials, according to Lola A. Fashoyin-Aje, MD, MPH, Acting Deputy Director in the Division of Oncology 3, Office of Oncologic Diseases with the FDA.
As a result, she noted, "the patients who ultimately are supporting approval of new therapeutics for oncology, for example, are not really reflective of the diversity of the U.S. population."
The FDA has been engaging with a number of partners, including AACR and ASCO, to broaden eligibility criteria in clinical trials, according to Fashoyin-Aje, who noted that this is often a barrier for underrepresented minorities.
"We are promoting and encouraging sponsors to really adopt clinical trial designs that allow for broader and more inclusive enrollment, even if the analysis of efficacy and safety that will support the approval is based on a more restricted patient population because that will give not only broader access to a trial", she noted, "but it will also enable us to collect information in the most standardized and controlled fashion for patients who may have more comorbidity."
Why, if clinical trials are not enrolling a diverse patient population, are the drugs being approved? Fashoyin-Aje is often asked this question and she addressed it during the panel discussion. "Patients don't have the luxury of time [and] we're not in the business of not approving drugs that work," she explained. "We do need to be in the business of ensuring that the drugs we approve are working for a majority of patients."
Health Disparities
Health disparities among minority patients remain a critical issue that must be addressed and the COVID-19 pandemic has only emphasized these inequities.
Minorities, including Latinos and African Americans, who already face health disparities are the same groups that have been disproportionately affected by COVID-19, noted Marcia R. Cruz-Correa, MD, PhD, Director of the Gastrointestinal Oncology Division, Oncologic Hospital, University of Puerto Rico Comprehensive Cancer Center.
"We [have observed] that the death rate among minorities-both Latinos and African Americans-was 2-3 times higher when compared to non-Hispanic whites," she said, noting that there are a number of factors contributing to this disparity, including comorbidities and access to testing.
So, what can be done? "I think one of the aspects that we cannot forget is that there are hospitals that take care of minority groups," she explained. "They are disproportionately carrying the burden of this disease. So, providing resources to those hospitals that take care of these patients is key."
Looking to the future, Cruz-Correa emphasized the importance of preventive care and early detection. "Minorities are by far the groups that present with cancer at advanced stage," she said. "It's usually a direct response to simply not having the right test at the right time. So, we need to go back to cancer screening and prevention."
Ongoing health disparity research is vital to improving outcomes for these patients, and as mentioned above, this underscores the need for equal representation among the research teams themselves.
"It's painful again to acknowledge the overt, ugly, dangerous aspects of racism while also, as we all know, acknowledging that the undercurrent of racism has made it very difficult for our brightest and best to even think about going into cancer research [and] health disparities research, but we must continue to try to focus on understanding the science of health disparities and the science of health care delivery," said Judith S. Kaur, MD, Professor of Oncology and Medical Director of the Native American Programs at the Mayo Clinic Cancer Center Florida.
Industry Efforts
An important component of ongoing growth and improvement in the field includes efforts made by industry partners. During the session, representatives from Merck and Roche/Genentech shared their commitment to addressing racial inequity and health disparities.
"First and foremost, we are committed to conducting research to develop novel medicines and vaccines that address important unmet medical needs to help improve the quality and quantity of life for people all over the world," noted Kenneth C. Frazier, Chairman of the Board and CEO, Merck & Co., Inc., who emphasized the importance of clinical research that includes people of varying age, race, ethnicity, and gender.
Building trust and educating the public on the benefits of clinical trials are crucial, Frazier explained. Additionally, he emphasized the importance of increasing opportunities for underrepresented groups to participate in oncology research by removing barriers, such as out-of-pocket costs.
"We have to increase partnerships-and this is extremely important-with minority investigators and those who serve communities of color to help improve the diversity of participants in clinical trials, not just the patients, but the people conducting those trials themselves," he noted.
The industry must also recognize ongoing health disparities. "We're all contending with the COVID-19 pandemic [and] what that has revealed is the stark inequities in our society that have led to a disproportionate impact on people of color," Frazier noted.
Another important component is a diverse workforce within companies like Merck. "If we are not diverse ourselves, there's no way we can serve mankind in its full diversity," Frazier said.
Levi A. Garraway, MD, PhD, Chief Medical Officer, Executive Vice President, and Head of Global Product at Roche/Genentech, emphasized the importance of bringing attention to racial bias. "Calling out that mindset and recognizing [its prevalence] is a big part of countering it," he noted. "And so, we have several ongoing efforts to address these [issues] and certainly one is a large effort in inclusive research.
"In terms of our own culture, [Genentech] recently hired a chief diversity officer who has a team that represents our entire business," he continued. "The fact that we have this in place has allowed us to really center our focus on what progress can look like."
Garraway noted that, while these initiatives are important, you can't just put them in place and expect issues of racial bias to go away. "If you really want to make a sustained change in this area, one needs to be willing to set goals and measure progress towards those goals and have accountability for those goals," he said. "So, there's a lot more that we need to do at Genentech and Roche, but, certainly, we're proud of the steps that we've taken thus far."
Ongoing Commitment
As the session came to an end, panelists urged the cancer community to commit to positive change with a focus on taking action and supporting their colleagues of color as well as holding institutions, companies, and individuals accountable.
"Progress has been made, undoubtedly, but we still have a long way to go," noted John D. Carpten, MD, Professor and Chair of Translational Genomics; Director, Institute of Translational Genomics, University of Southern California Keck School of Medicine. "We have to get to a point where people can begin to feel comfortable recognizing racism, and yes, racism is a hard word.
"We tend to want to use this word diversity and inclusion because it sounds better," he continued. "I think people are more comfortable with that, but we've got to become more uncomfortable if we're really going to move the needle and see racism dispelled in America."
Ribas concluded the discussion with a commitment from AACR. "I'm really grateful for you sharing your thoughts. There's a lot for us to follow up on," he said, emphasizing that now is the time to act. "We're going to follow your leads. We're going to take the challenges and we're going to put our best efforts to change what has happened for so many years. This is not okay; we have to call the things by their name and we're going to do that."
Catlin Nalley is a contributing writer.