To focus on inequities in cancer care and efforts to reduce them, the National Comprehensive Cancer Network (NCCN) held a patient advocacy summit at the National Press Club in Washington, D.C. The summit featured speakers, presentations of case studies, and panel discussions focusing on medically underserved and disadvantaged populations and how to achieve equity in cancer care for all Americans.
One of the benefits of the summit is that it brought together patient advocates working with different populations in different geographic areas, so they could share ideas and information, NCCN CEO Robert W. Carlson, MD, told Oncology Times. “Most work in their own silos.”
He noted that NCCN hosted the summit because “people with cancer can be excluded from optimal care for many reasons, including geographic location, socioeconomic class, sexual orientation and identity, insurance status, unconscious bias, and other aspects beyond their control.”
Creating Quality Care
With persistence, it is possible to bring high-quality cancer care to the underserved, emphasized Lynette Bonar, RN, MBA, BSN, FACHE, a Navajo Tribal member who is CEO of the Tuba City Regional Health Care Corporation (TCRHCC) in Arizona, the only hospital on Navajo land. The TCRHCC, which is Joint Commission accredited, provides services to a 6,000 square mile area, caring for patients from Navajo, Hopi, and Southern Paiute tribes. While cancer can be diagnosed at the TCRHCC, which has four satellite clinics and more than 20 outpatient clinics, it cannot be treated there. Thus, Native American cancer patients have had to travel up to 100 miles or more to cities such as Flagstaff or Tucson to obtain care.
In a keynote address, Bonar described a success story: the establishment of a new oncology center, Canyon House, on Navajo land. Set to open shortly, Canyon House is the first and only cancer center on a Native American reservation.
“Very few of our patients have the means to make the minimum 170-mile round trip for one [cancer] treatment,” said Bonar. She described a Native American population which has an unemployment rate of 61.5 percent, where the poverty rate is more than 43 percent, where 43.1 percent of residents have no indoor plumbing, where many lack electricity and where many people do not have the $100 it takes to fill a truck with gasoline to make the journey for even one cancer treatment.
Canyon House, named for Navajo Tribal member Leona Canyon who died of complications from cancer treatment, will serve a Native American population that is at risk for cancer, noted Bonar. Rates of obesity and alcohol abuse are higher than 40 percent. The high rates of obesity will almost certainly translate into more cancers, said Bonar, noting that she wants to address obesity prevention in the schools.
In addition, 85 percent of homes in the Navajo Nation are contaminated by uranium from abandoned mines. Navajos living near those mines have higher levels of uranium in their bones than 95 percent of the American population. There are “continual abandoned uranium mine effects,” said Bonar, noting that most Native Americans tend to develop chronic diseases about 10 years earlier than the rest of the U.S. Many Native Americans tend to put off seeing a physician or fail to go at all because they cannot afford it, and they may have advanced disease when they finally get care.
Frank Dalichow, MD, and Johanna DiMento, MD, both medical oncologists, are a husband and wife team who will treat Native Americans at Canyon House. Asked by Oncology Times about their goals, Dalichow said they want to provide “basic oncology care.” Asked about the challenges of treating patients with advanced cancers, DiMento stated, “A lot of people we see come to us with stage IV disease.” She said her hope is to be able to treat those patients effectively, so they will experience remission or have stable disease.
Addressing All Patient Needs
Shonta Chambers, MSW, Executive Vice President-Health Equity and Community Engagement for the Patient Advocate Foundation, emphasized that providing high-quality cancer care to the underserved today includes not only providing the right care at the right time, but also embracing and addressing the patient's social, financial, geographic and economic issues and needs, regardless of cancer type.
In addition to socioeconomic, insurance, and geographic factors, sexual orientation can lead to biases that foster being medically underserved, said Liz Margolies, LCSW, founder and Executive Director of the National LGBT Cancer Network. While the Affordable Care Act has helped the lesbian, gay, bisexual, and transgender population obtain health insurance, they are still far less likely to be insured, said Margolies. She said some physicians hesitate to take transgender or nonconforming gender patients because they don't know how to treat them. Margolies said that fully 19 percent of LGBT patients have been turned away by the medical community, and they live with stigma and stress that may increase cancer risk.
Julia R. Trosman, PhD, MBA, Co-founder and Co-Director of the Center for Business Models in Healthcare, who holds adjunct faculty appointments at Northwestern University's Feinberg School of Medicine and the Department of Clinical Pharmacy at the University of California, San Francisco, said it is important to have organizational systems in place to make sure that the underserved receive coordinated care.
“Care is fragmented across specialties, practices, institutions, localities, and settings,” Trosman noted. This fragmentation is a barrier to high-quality cancer care because “cancer care is highly interdependent,” and is delivered by a team.
Trosman is developing, piloting, and implementing the 4R model of cancer care planning and delivery to achieve health care equity; the model stresses the right information, the right care to the right patient at the right time in the right sequence. Trosman emphasized that inadequate timing and sequence of cancer care leads to inadequate care, especially for minorities and the underserved.
“A systematic, intentional approach is needed,” she said. For example, such a framework can ensure that a cancer patient receives a flu shot 2 weeks before chemotherapy, since the shot cannot be given during chemotherapy because it reduces the efficacy of the anti-cancer treatment.
Trosman said professionals who work with the underserved in the safety net setting need to identify the limitations of the cancer patient's insurance (if the patient has insurance) and the limitations of the provider network and make referrals to outside care organizations that can help with needed support services and resources.
Clinical Trial Education
While a clinical trial might be the best option for a medically underserved cancer patient, speakers at the summit described many barriers to enrollment for the disadvantaged, including a lack of knowledge, misconceptions, lack of money, language issues, lack of transportation, fear, and stigma and cultural mistrust, some lingering from historic trials such as the infamous Tuskegee syphilis experiment.
“We need to educate people on clinical trials today,” said Shonta Chambers. “We need a new narrative,” she added, to combat the lingering stigma surrounding memories of misguided trials such as Tuskegee. Natalie Dickson, MD, Chief Medical Officer for Tennessee Oncology, PLLC, agreed. All cancer patients, including the underserved, need to know that clinical trials represent “an opportunity to get cutting-edge care,” she said.
Dana Dornsife, Chairman of the Board and Founder of Lazarex Cancer Foundation, described losing her brother-in-law to pancreatic cancer and forming the Lazarex Foundation with a mission to remove these clinical trial enrollment barriers. In 2006 Dornsife founded the nonprofit to improve the outcome of cancer care for advanced stage cancer patients and the medically underserved by identifying FDA-approved clinical trial options, providing help with ancillary out-of-pocket costs for trial participation and community outreach.
Dornsife said the foundation has supported more than 4,000 patients in need over the past 12 years. She described the foundation's IMPACT (Improving Patient Access to Cancer Clinical Trials) program, which had its beginnings in a partnership with Massachusetts General Hospital called the Lazarex MGH Cancer Care Equity Program.
“We achieved a 29 percent increase in overall participation and doubled minority participation in cancer clinical trials,” according to information from the foundation. That effort has been expanded into IMPACT, a 3-year pilot study that will ultimately be rolled out in eight Comprehensive Cancer Centers.
In a related development, the NCI recently revised its clinical trial protocol template to broaden eligibility for cancer clinical trials, a move heralded by ASCO and the Friends of Cancer Research (FOCR). The revisions, which may help to improve trial participation by minorities and the underserved, broaden eligibility in selected trials to patients with brain metastases, HIV/AIDS, chronic hepatitis B, a history of hepatitis C, organ dysfunction, and prior and concurrent malignancies. Both ASCO and the FOCR, working with the FDA, had suggested these revisions through a collaborative effort that began in 2016.
William “Billy” Foster, a jazz musician, elementary school music educator, composer, and radio host who is African-American, described his 6-year participation in a clinical trial and living as a survivor of metastatic kidney cancer for more than 20 years.
He said of clinical trials, “A lot of African-Americans mistrust the system.” He noted that his effective cancer care has allowed him to remain actively employed for more than 40 years; his band now performs at cancer events. Foster, who is active with the Kidney Cancer Association and has spoken on panels for the Kidney Cancer Research Program and the City of Hope Cancer Center, said he is dedicated to equitable cancer care for all: “Everyone deserves equal access to good health care. I'm here to bring some understanding to why this isn't currently the case and to help find solutions to these inequities. I believe that with the efforts of all, we can provide the underserved with accessible, quality health care.”
Peggy Eastman is a contributing writer.