On May 25, the American Society of Clinical Oncology (ASCO) held a virtual roundtable focused on achieving equity in precision cancer care. Leaders in oncology described challenges to achieving equity in precision cancer care, along with the actions needed at the provider, institution, and government levels to ensure equitable access to precision medicine advances.
Lori J. Pierce, M.D., ASCO’s president, and Sybil R. Green, J.D., M.H.A., the organization’s diversity and inclusion officer, moderated discussions on how to decrease disparities in treatment and clinical trial participation.
Otis Brawley, M.D., Bloomberg Distinguished Professor at Johns Hopkins University, noted that whenever we have an improvement in treatment for cancer, or an improvement in screening or diagnosis, we actually create disparities. “There's a group of people who get the advancement, and a group of people who don’t,” he said. “Many people are not aware that the Black/White difference in colorectal cancer mortality or breast cancer mortality didn't exist in the 1970s. It's only in the 1980s, after we learned how to screen and treat for those diseases, that we started having disparities between Blacks and Whites. As we move into an era of precision medicine, I think we're going to have the exact same thing. We're going to have a group of people who don't get these new wonderful treatments or don't get them as much, and a group of people who are more likely to get them. I think part of the solution is to figure out how you get adequate care to all human beings.”
Brawley said the first policy step he would recommend is to make sure that payment for healthcare is the same for everybody. “I think of Medicaid as a form of institutional racism,” he added. There are hospitals that will not take Medicaid, and they provide very high-quality care. And there are hospitals and doctors that take Medicaid and they are overrun and overwhelmed, and are resource-challenged because they have chosen to help people who are poor.
Poor Americans end up in hospitals that have a scarcity of resources and cannot provide cutting-edge care the way hospitals that only take private insurance can, he said, pointing to a study from California a few years ago that looked at treatment of Blacks and Whites for colon cancer. It found that in California, the majority of Blacks only have six lymph nodes resected out after a colon cancer surgery, whereas the majority of Whites get about 18. “It's not that pathologists are racist,” Brawley said. “It's that the pathologist working in the hospitals where most Blacks get treated had five or six cases to deal with per day; the pathologist working in hospitals where Whites were treated had one or two cases to deal with a day and had time to deselect out the 18 lymph nodes. I'm very concerned about where we get care and how care is being paid for. The greatest question that we can ask in cancer control is how can we get adequate healthcare to all Americans? One thing I would do is try to make sure every patient had some type of navigator or advocate, because so frequently, the problem for healthcare, more than Black and White, it is really rich versus poor. The problem is that people who are less educated or less sophisticated in medicine have difficulty getting into our system, and difficulty navigating our system.”
Brawley estimated that if we provided adequate care including prevention, screening, diagnosis and treatment to all Americans and had been doing it over the last 30 to 40 years, of the 600,000 who died from cancer this year, about 130,000 would not die. “The disparities are that big — 20 to 23 percent of all cancer deaths are avoidable if we simply applied what we have now. That's not a breakthrough treatment. That's just apply what we have now from prevention all the way through treatment.”
Blase Polite, M.D., M.P.P., professor of medicine at University of Chicago Medicine, is also the Special Editor of JCO Oncology Practice’s Special Series, Disparities in Cancer Care for Black People in the United States.
He noted that we are hampered by having a fragmented system of care. Many Black patients, or patients who live in low-resource settings, are not connected to a comprehensive set of care, he said. They may be in a Federally Qualified Health Center, and they may get diagnosed with their colon cancer there with a blood test. “Once they're diagnosed, getting them into the system becomes a major barrier,” Polite said. “We have to do a better job of navigating people through that system, and then holding ourselves accountable for patients who are falling through the system. If health systems are serious about health equity, then it should be an outcome metric that we pay attention to and that has consequences,” Polite said.
Just like vaccines don't save patients, vaccinations do, screening tests don't save you, unless you actually follow through, get the diagnosis, and get treatment for it, Polite said. He advocates that health equity should be a major metric for Medicaid managed care organizations.
“States should be using those metrics to decide where they're sending patients,” Polite said. “My overall theme from a policy standpoint is that if we're serious about health equity, then make it a major priority and a major metric for how we assess how care is provided. Until we do that, it's just talk. We feel bad about it. We wish things were better. We have to incentivize it and make it a high-stakes metric. And I guarantee you, people will find solutions, because there are solutions to this. This is what drives a lot of us crazy —there are successes if you care and if you prioritize.”
Manali Patel, M.D., M.P.H., is a thoracic oncologist and health services researcher at the Stanford University School of Medicine and the Veterans Affairs Palo Alto Healthcare System. Her experience lies in designing, implementing and evaluating new models of care delivery aimed at achieving cancer health equity. She's chaired ASCO’s Health Equity committee and has been a leader in addressing disparities across the care continuum.
She noted that participating in a clinical trial is often the best treatment option for an individual with cancer. Yet racial and ethnic minorities, low-income Americans, the uninsured, and those living in rural communities are less likely to participate in clinical trials. For instance, only 5 percent of clinical trial participants are Black despite making up 13 percent of the population.
“Very personalized precision medicine has transformed and improved patient outcomes, but only for a subset of the population,” Patel said. “We simply are not doing a good job of providing basic cancer care. When populations are excluded from research, that research certainly may not benefit all of these populations. And it is imperative, therefore, that we really over-recruit historically excluded populations, so that all populations can stand to benefit from the novel advancements in cancer, making sure that these are not only applicable, but also accessible to populations.”
If we're really serious about achieving cancer equity, we must ensure that all populations can benefit from the research on which these advances are developed, which means that we must include all populations in this research and make sure that these trial populations are representative, Patel said. “Partnerships are really key. We've partnered with community-based organizations. We hire and train community health workers to engage patients not only in their cancer care to ensure that basic care is provided, but also in helping to provide awareness regarding the importance of clinical trial opportunities.”
Patel described a recent study she worked on published in the Journal of Clinical Oncology Practice that describes a partnership with a labor union organization in Chicago. “We trained the community health workers. We also designed payer benefits such that coverage of usual cancer care was covered,” she said. “We also included coverage of social determinants of health such as transportation and childcare, which we know sometimes make it impossible for patients to even receive care much less participate in a clinical trial. And there we quadrupled the enrollment of historically excluded populations and cancer clinical trials simply by redesigning the process with these partnerships.”
Another aspect to consider is rethinking how we design clinical trials to make it easier for people to participate, Patel said. “I think COVID has taught us many lessons, one of which was that we can divorce aspects of clinical care from sites that are far and inconvenient for particular patient populations. In fact, all patients probably would prefer to receive care and some aspects of care in their homes. So why not rethink how to deconstruct clinical trials — take components that can be provided in patients’ homes and make them more convenient so that the populations who we really want to include in these trials can actually participate. And that's really where the community-based organizations can help.”
