Jul 28, 2021
By Hayley Fahey, ASCO Publishing
ASCO’s recent virtual roundtable, “From Diagnosis to Treatment: Ensuring Equity in Precision Cancer Care,” brought together nationally recognized oncology leaders to examine challenges and solutions to ensuring equitable access to precision medicine for all individuals with cancer. The roundtable, which took place in June, was moderated by 2020-2021 ASCO president Lori J. Pierce, MD, FASTRO, FASCO, and ASCO Diversity & Inclusion Officer Sybil Green, JD, RPh, MHA.
As precision cancer care advances become more widely available, there are real concerns that longstanding disparities in cancer care and outcomes will widen further. Racial and ethnic minorities, people with lower incomes, people living in rural communities, and uninsured patients are less likely to be offered the genetic testing and genome sequencing necessary for a complete cancer diagnosis,1 less likely to receive a targeted therapy, and less likely to enroll in a clinical trial.2 These factors contribute to well-documented disparities in survival and other outcomes.
Inequities in precision cancer care are “complex and they’re multifaceted,” Dr. Pierce said in her introduction. “We know that lack of health insurance or inadequate health insurance are big problems. In some communities there's clear mistrust in the health care system. And we know that long-standing structural inequities, including systemic racism, play a major role in reducing access to high-quality cancer care, and that includes precision medicine.”
New Advances Create New, Broader Disparities
The roundtable featured a conversation between Dr. Pierce and Otis Brawley, MD, of Johns Hopkins University. During the discussion, Dr. Brawley said that whenever there is an improvement in treatment or screening for cancer, disparities are created.
Dr. Brawley explained that cancer mortality disparities among Black and white patients didn’t appear until the 1980s, when advances were made in screening and treatment. In the 1970s, before the treatments improved, mortality rates for breast and colorectal cancers among Black and white patients were largely the same.
As oncology moves into an era of precision medicine, existing disparities will continue to grow, Dr. Brawley said, and the solution is to figure out how to get adequate care to everyone.
“If we provided adequate care to include 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 are going to die from cancer this year, we estimate about 130,000 would not die,” Dr. Brawley said. “The disparity is that big. 22%, 23% of all cancer deaths are avoidable if we simply applied what we have now… from prevention all the way through treatment.”
Ensuring Every Patient Gets a Timely and Complete Diagnosis
Before any targeted therapy can take place, a patient must undergo screening for cancer and then the proper testing for relevant biomarkers to obtain an accurate diagnosis. This need for a timely and complete diagnosis was the topic of the roundtable’s first expert panel, “Leaving No Patient Behind in the Era of Genomic Testing.”
The panel started the discussion by describing what a timely and complete cancer diagnosis looks like in the era of precision cancer care. “Cancer is not one disease,” said panelist Olufunmilayo Olopade, MD, FACP, of the University of Chicago. “The standard of care should be, tell me I have cancer. But the second question is, what type of cancer and what drugs would target the type of cancer I have. That [information] should be available to every patient, everywhere.”
Unfortunately, some patients—particularly those who are Black or Latino—are less likely to receive a complete diagnosis, and many are diagnosed at a more advanced stage of disease with more aggressive forms of cancer. For example, Black women in the United States are more likely to be diagnosed with triple-negative breast cancer than white women, and Black women have a 40% higher mortality rate from breast cancer compared with white women.3
The panel discussed barriers including transportation, language, and mistrust of the cancer care system, and how these barriers translate into poorer outcomes for patients. The panel also discussed how physicians and other health care providers can work to build trust with their patients.
Panelist Ysabel Duron, of the Latino Cancer Institute and a cancer survivor herself, works directly with many Spanish-speaking patients. During the discussion, she described helping a patient with terminal colorectal cancer navigate through the system at a public health care hospital. The patient, who spoke Spanish and had a Spanish-speaking navigator, said the most important thing for them was having someone on their team who spoke their language. Ms. Duron said that, without language, “You don't know what to do, where to turn, [or] how you will pay for [treatments].” Patients are often left feeling overwhelmed without someone on their team to help them communicate.
The panel also raised the issue of fragmentation of the health care system, whereby many patients, particularly those who are Black or who live in low-resource areas, are not connected to comprehensive cancer care. Panelist Blase Polite, MD, MPP, FASCO, of the University of Chicago, shared the shocking statistic that only 20% to 25% of patients with a positive fecal immunochemical test have a follow-up colonoscopy. “Screening tests don't save you unless you actually follow through, get the diagnosis, and get treatment for it,” he said.
Dr. Polite urged the entire oncology field and broader heath community to move from discussion to action. “If we're serious about health equity, then make it a major priority and make it a major metric for how we assess the care being provided,” he said. “Until we do that, then it's just talk. Incentivize it, make it a high-stakes metric, and I guarantee you people will find solutions—because there are solutions to this.”
Achieving Precision Cancer Treatment for Every Patient, Everywhere
The second panel, “Focusing on Access to Precision Cancer Therapies” was moderated by Ms. Green. The panel discussed some of the challenges with getting treatment for patients, starting with a lack of representative cancer data. Right now, data—whether from clinical research or real-world data from electronic health records or genetic screenings—do not adequately reflect the diversity of the patient population. As highlighted in an ASCO policy brief on increasing diversity in clinical trials, “a clinical research enterprise that does not recruit representative study populations may be unable to ascertain potential differences in drug efficacy or tolerability between subpopulations,” further widening already existing disparities.4
“When populations are excluded from research, that research certainly may not benefit all populations,” said panelist Manali Patel, MD, MPH, of Stanford University and Palo Alto Healthcare System. “It is imperative, therefore, that we really over-recruit historically excluded populations so that all populations can stand to benefit from the normal advancements in cancer, making sure that these [advancements] are not only applicable but also accessible to all populations.”
Dr. Pierce described some of the efforts underway to improve data to be more representative of the larger population, including the National Institutes of Health All of Us Research Program which is aimed at building one of the most diverse health databases to expand knowledge of precision medicine approaches. Another program already in place is ASCO’s own Targeted Agent and Profiling Utilization Registry (TAPUR) Study, which aims to learn more about how precision medicine therapies perform in real-world settings. Dr. Pierce noted that there is momentum to loosen restrictive eligibility criteria for clinical trials, especially for industry trials with very low rates of minority participation.
Panelist Carmen Calfa, MD, of the University of Miami and Sylvester Comprehensive Cancer Center, shared her experience as the center’s principal investigator for the TAPUR Study and some of the lessons learned—specifically, how oncologists can expand patient access to precision therapies.
“A lot of patients that come to our doors don't know anything about next-generation sequencing,” one of the first steps to accessing precision therapies, Dr. Calfa said.
Similar to how patients ask about disease stage at diagnosis, Dr. Calfa wants patients to be informed enough to ask, “Do I have [access to] next-generation sequencing? Can I get it? And if not on solid tumor, can it be done on a liquid biopsy? And based on that, am I eligible for a clinical trial?” She believes this is an opportunity to educate patients and patient advocacy groups so that they can empower patients to seek the best treatment available.
One of the major challenges with making precision medicine accessible to every patient is cost, including the attendant costs of additional diagnostics and genetic and biomarker testing. A first essential step is to make sure that every patient has adequate medical insurance.
“Many people who are uninsured are likely eligible for coverage—not everywhere, but right now, in most of the country, it is true,” said panelist Sherry Glied, PhD, of New York University's Wagner Graduate School of Public Service.
Although oncologists and their patients are naturally very focused on cancer, Dr. Glied emphasized that insurance coverage is a solution that reaches beyond access to cancer precision medicine. “In overcoming the disparities in precision cancer care access, we need to actually get people insurance coverage. Getting people coverage means that they have access to the full suite of medical services, whereas cancer-specific solutions are only going to address that particular problem. We need to address the many facets of the problem—the cancer itself, but also access to coverage and care.”
Watch the full roundtable to learn more about disparities in precision cancer care, and the solutions necessary to ensure health equity for every patient, every day, everywhere.
- American Cancer Society Cancer Action Network. Disparities in Cancer Screening and Early Detection. April 8, 2021.
- Huey RW, Hawk E, Offodile AC 2nd. Mind the Gap: Precision Oncology and Its Potential to Widen Disparities. J Oncol Pract. 2019;15:301-4.
- Richardson LC, Henley SJ, Miller JW, et al. Patterns and Trends in Age-Specific Black-White Differences in Breast Cancer Incidence and Mortality – United States, 1999–2014. MMWR Morb Mortal Wkly Rep. 2016;65:1093-8.
- ASCO. Improving Diversity in Clinical Trial Participation: Policy Brief. October 2020.