publication date: Jun. 26, 2020
AACR session on disparities points to the new consensus: Being woke is not enough
By Alexandria Carolan
The name of the session was a message in and of itself: “Racism and Racial Inequalities in Cancer Research.”
Together, speakers at the panel convened by the American Association for Cancer Research expressed the ideas of the new consensus: that cancer is a cluster of molecular manifestations of a greater political malaise.
The problems that manifest themselves as cancer are interconnected, inseparable. The problems of disparities in patients who get cancer cannot be separated from the problems of a lack of balance among people who search for more effective treatment and those who make clinical decisions.
If the AACR session is an indication, oncology leaders from academia, government and industry agree that—to paraphrase Martin Luther King Jr.— injustice anywhere along the chain is a threat to justice everywhere.
It’s one big thing: isolating discreet little injustices in today’s George-Floyd-and-COVID-19 America is missing the point.
“Hopefully from this point forward, we are more than just woke. We are active in maintaining our health, not only just our personal health, but this racial equity. Putting that altogether—our health—on a daily basis,” Robert Winn, director of the VCU Massey Cancer Center, said at the AACR session.
The murder of George Floyd prompted Winn, the only Black director of an NCI-designated cancer center, to reflect on his own close calls with police brutality. “I am almost certain that no other director of an NCI-designated cancer center can claim the distinction of having had a gun pulled on them by police,” he wrote in this publication. (The Cancer Letter, June 5, 2020).
The killing of Floyd marked a moment of change for John D. Carpten, professor and chair of translational genomics, director of the Institute of Translational Genomics at the University of Southern California Keck School of Medicine.
“There have been a lot of events throughout history, but this one struck a nerve in me in a way that I’ve never had the feeling that I felt,” Carpten, who is also chair of the AACR Minorities in Cancer Research Council, said. “It was the moment when I said to myself—no matter what I do, no matter what I accomplish in life, the first thing someone will see in me is Black.”
The unified condemnation of racism has engendered hope.
“Black lives should matter when it comes to, for instance, education. Black lives should matter when it comes to the judicial system and inequalities in the judicial system,” Carpten said. “Black lives should matter when it comes to employment opportunities. And, of course, from our standpoint, Black lives should matter when it comes to health equity.”
Diversity in the oncology workforce
Carpten is working with Black trainees in his department to let them know they’re not alone, even though a lot of the time, they are the only Black researcher in the lab.
“I’ve been doing everything I can to work with others at USC Keck School of Medicine to make sure that all of our trainees and early-stage investigators have the support they need going forward,” Carpten said.
Russell J. Ledet is president and co-founder of The 15 White Coats, a group of medical students who work against racism and disparities, pursued his education in part because he hoped it could prevent him from being racially profiled.
“No matter how much education I have, I don’t know right now whether that education will save that from happening to [my daughter] or my nephews,” Ledet, a third-year MD-MBA student at Tulane University School of Medicine and A.B. Freeman School of Business, said at the session. “That’s a numbing feeling. You almost feel hopeless, because you’re not sure what is going to change it.”
NIH has designed programs to enhance diversity, including the Diversity Program Consortium, national mentoring network, the Maximizing Opportunities for Scientific and Academic Independent Careers program, and the Faculty Institutional Recruitment for Sustainable Transformation program.
“We recognize that it’s a vicious circle,” said Hannah Valantine, chief officer of scientific workforce diversity and senior investigator in the Intramural Research Program at the National Heart Lung and Breast Institute. “If we’re not successful in increasing the faculty level diversity in particular Black scientists, we will not make a difference, first in the demographics, secondly in the inclusion, and thirdly in the health disparities.”
African American scientists get less funding than non-Hispanic whites, Valentine said.
“If we continue to speak with a despair that all of us are feeling this week, I don’t see how any other of our Black trainees will join us in this work,” Valentine said. “We have some hope. [Within] the career development awards, the K awards—that funding gap for Black scientists, has been completely eliminated.”
NIH has programs in the works to address funding gaps within the R01 mechanism, Valentine said.
Early intervention to provide educational opportunities is also crucial, said Lola A. Fashoyin-Aje, acting deputy director of the Division of Oncology 3 in the Office of Oncologic Diseases at FDA.
The #WhiteCoatsforBlackLives march in Washington, D.C. June 6. Photo courtesy of Pock Utiskul
The Oncology Center of Excellence Summer Scholars program at FDA helps to provide those opportunities for underrepresented populations in science, she said.
“The issue of the pipeline starts well before anyone is eligible for an R01 or K. It really starts quite early, and we can all play a part in helping to foster that,” she said.
Academics have been vocal about disparities since the 1960s, VCU Massey’s Winn said.
“The reality is many of us have been saying the same thing for—God knows—since the ‘60s, in the ‘70s, in the ‘80s. It’s like a fugue state. We keep going back to the same information,” Winn said. “This excuse that we need to re-study, we need to replan—what I suggest is we just need to do. And to have the will is the hardest part of this whole issue.”
For years, cancer researchers have had the tools to eliminate disparities, Winn said.
“The truth of the matter is, I refute that we don’t know how to get this done,” Winn said. “And at some point during this issue around equity we felt just like an antibiotic that was prescribed for 14 days, when we took it for 8 days, or 4 days we probably felt good—so we stopped.”
Health care disparities
Diversity in clinical trials is one area that needs to change, the panelists agreed
Immune therapeutics are often approved based on clinical trials that do not reflect diversity of the U.S. population, FDA’s Fashoyin-Aje said.
“That is problematic on many levels, including the fact that there’s decreased access—there’s no access for a majority of patients to be on clinical trials, which in many diseases is still the best care that can be received for the patient,” she said.
Drugs are also approved for diseases that vary by race and ethnicity, Fashoyin-Aje said.
“It’s problematic that we’re having to approve drugs that are not really appropriately characterizing safety effectiveness in those demographic subgroups,” she said.
FDA is partnering with AACR and the American Society of Clinical Oncology to broaden eligibility in clinical trials, which is a barrier for minorities. Global clinical trials also need to be more inclusive to Black patients as well, she said.
“Subsaharan Africa, South, Central America are places that could also be explored as potential ways to enroll patients with ancestry that’s similar to patients who are underrepresented in U.S. trials,” Fashoyin-Aje said.
Minority patients can be discouraged from participation in clinical trials when those conducting the trials aren’t diverse, said Kenneth C. Frazier, chairman of the board and chief executive officer of Merck.
“When people don’t see people like them conducting these trials, they’re not so sure whether we’re doing something for them or doing something to them,” Frazier said at the session. “We have to increase partnerships 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.”
Black patients are better represented in NCI-funded cancer clinical trials than those funded by industry, according to a study published in JNCI Cancer Spectrum.
In the study by Joseph Unger et al., also presented at AACR virtual annual meeting II, Black patients accounted for 2.9% of pharmaceutical company-sponsored trials, and 8.3% for SWOG trials.
“Because pharmaceutical company-sponsored trials test the newest available therapies, limited access to these trials represents a disparity in access to potential breakthrough therapies,” the authors concluded. “Pharmaceutical companies could improve racial/ethnic diversity in their trials—and expand access to all patients—through increased outreach to community sites, as suggested by the findings for the NCTN trials.” A related story about participation by minority racial and ethnic groups in NCI-clinical trials appears here.
In the U.S., Black patients are less likely to have access to treatment, because they cannot afford it, either because of lack of insurance, or insurance that is too expensive and doesn’t cover treatments.
A study by Anna Lee et al., “Changes in cancer mortality rates after the adoption of the Affordable Care Act,” showed a 29% decline in age-adjusted overall cancer mortality rates in states with expanded Medicaid, falling from 65.1 to 46.3 per 100,000 individuals, from 1999 to 2017 (The Cancer Letter, June 5, 2020).
By comparison, in states that did not expand Medicaid, rates dropped by 25%, from 69.5 to 52.3 per 100,000 individuals. However, the same mortality decrease was not seen in Black patients.
“You get a system where, by innovating in a way that doesn’t account for racism and doesn’t account for other forms of discrimination, you actually perpetuate and exacerbate disparities,” Christina Chapman, assistant professor in the Department of Radiation Oncology, University of Michigan School of Medicine, and Center for Clinical Management Research, VA Ann Arbor Healthcare System, previously said to The Cancer Letter (The Cancer Letter, June 12, 2020).
At Roche, race equity training can help to expand representation, said Levi A Garraway, chief medical officer, executive vice president and head of global product at Roche.
“One clear element there is to develop a plan for all of our officers in our company to make progress around diversity and inclusion in our organization,” Garraway said at the AACR session.
Roche has hired a chief diversity officer to increase diversity.
“You can’t just have a diversity office and expect these issues to go away,” Garraway said. “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.”
COVID-19 has demonstrated the same inequalities that are pervasive within cancer, said Marcia Cruz-Correa, director of the Gastrointestinal Oncology Division at Dr. Isaac Gonzalez Martinez Oncologic Hospital, professor of medicine, biochemistry and surgery, and an affiliated investigator of cancer biology at the University of Puerto Rico Comprehensive Cancer Center.
Thirteen percent of Americans are Black, yet they account for 33-36% of those affected by COVID-19. How do you address this immediately?
“One of the aspects we cannot forget is that hospitals that take care of minority groups are disproportionately carrying the burden of this disease,” Cruz-Correa said at the session. “Providing resources to those hospitals that take care of the patients is key.”
African Americans, who are more likely to be economically disenfranchised, face the brunt of layoffs brought on by COVID, Cruz-Correa said. Expanding Medicaid coverage to these populations will help decrease the burden, she said.
“As the COVID pandemic starts to ease out, we need to go back to cancer prevention, early detection, minorities are by far the groups that present with cancer at an advanced stage,” Cruz-Correa said. “And it’s usually a direct response of simply not having the right test at the right time.”
During COVID, telehealth has emerged as a way to equalize care for minority populations—barring technology barriers.
“If we could reduce the costly trips into the major medical centers by patients and their family members who have to take off from work, that in itself could be a boon,” Judith Kaur, professor of oncology and medical director of Native American Programs at Mayo Clinic Cancer Center, said at the session. “We may learn whole new ways of efficiently and effectively including patients and families in our trials if we maximize that.
The COVID-19 pandemic has taught oncologists to think on their feet, Fashoyin-Aje said.
“Industry partners [and] government have mobilized to really expedite and collaborate on addressing the issues of the COVID pandemic,” she said. “My hope really is that that same vigor and expediency will be applied to this issue.”
Where do we go from here?
“I know one thing that will help—is a whole bunch of non-Black people speaking up, and not just being allies. We don’t need allies, we need disruptors,” Ledet said. “We need people who will shake up conversations that they know are racist instead of being complicit at the dinner table.”
Marginalized people alone can’t hold the burden of eliminating racism, Ledet said.
“It’s the people doing the marginalizing that have to solve the problem. And that requires them doing some rethinking,” Ledet said.
Institutions and organizations also need to act, Kaur said.
“Yes, we need allies, but we also need re-education and re-commitment to the values that AACR stands for,” she said.