This post is an abridged version of an article written by Monica M. Bertagnolli, MD, FACS, FASCO. This article is published in its full length in the ASCO Daily News. Dr. Bertagnolli is the 2018-2019 ASCO President.
The theme of the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting is “Caring for every patient. Learning from every patient.” This article emphasizes the significance of the word “every” in this statement. Since 1991, the death rate from cancer in the United States has been declining, and this progress is attributed to advances in both cancer prevention and treatment. The U.S. population, however, demonstrates substantial variations in factors that influence both cancer incidence and survivability, and as a result some segments of our society are not seeing this positive trend. Foremost among the modifiable contributors to successful prevention or treatment is access to care.
To understand more about the complicated dynamics of access to care, we reached out to ASCO members who care for cancer patients facing significant challenges to health care delivery. Together with Lynne Blasi, ASCO’s Division Director of Patient Education and Advocacy, I traveled to their clinics and had the privilege of hearing first-hand how they partnered with their patients and their communities to overcome barriers to care. The result is a collection of stories that inspire each of us to reach beyond the boundaries of the health care system to make it possible for all patients to receive the care that they need.
We gained so many important insights from this year’s travels. Lynne and I came away with a profound respect for the exceptional challenges that many patients and providers face and the courage and tenacity that they bring to meeting these challenges.
What follows is a series of recollections from our travels that illustrate these concepts in a more compelling way than I ever can.
Puerto Rico: Cancer care during and after Hurricane Maria
Hurricane Maria made landfall on the island of Puerto Rico on September 20, 2017. On the day before the storm, staff in the San Juan clinic and infusion unit run by ASCO member Lourdes Feliciano Lopez, MD, made printouts of the treatment plans for all patients undergoing active therapy, anticipating that the storm would bring power outages and loss of electronic health record (EHR) access. This turned out to be extremely important, as Maria threw the island into the longest electrical blackout in U.S. history. The challenges were enormous. Roads were impassable, and although the clinic had a generator, fuel was scarce, and it was important that the medication refrigerators remained cold. The generator was turned off intermittently to conserve fuel, and when this was necessary Lourdes’ team maintained the proper refrigerator temperature using ice made in their –70°F (–21°C) specimen freezer during the generator runs. With limited access to routine services, getting enough medical supplies soon became a major problem.
Dr. Feliciano Lopez was a member of a WhatsApp group known as Puerto Rico Oncology. Cell phone access was very limited, with only 5% of usual access remaining in the early days after the storm. Dr. Feliciano Lopez and her colleagues kept in contact by texting each other twice daily at 9 am and 4 pm, when they all would break away from work to find a location with cell phone reception. Because travel was mostly impossible for both patients and doctors, the WhatsApp group linked oncologists to patients who were near them. Dr. Feliciano Lopez described her first WhatsApp conversation after the storm hit: "Okay. This is not just my problem. This is our problem. It's not going to be easy if I by myself try to resolve it alone. But if we get together, it could be easier. We will send by WhatsApp the most important information to the medical office nearest the patient, so the patient can continue with the therapy there.”
The ASCO team visited Puerto Rico 16 months after Hurricane Maria. Although San Juan and its surroundings still showed the effects of the storm, operations at Dr. Feliciano Lopez’ clinic were back to normal. On August 28, shortly before our visit, the government of Puerto Rico revised the official death toll to 2,975 people, ranking Maria as 1 of the deadliest hurricanes in U.S. history.
The local medical community was absorbing the implications of this sobering statistic when we arrived. According to Marcia Cruz-Correa, MD, Professor of Medicine and Biochemistry at the University of Puerto Rico, “So many patients died. It's amazing what Lourdes and the WhatsApp group did for the chemotherapy patients. They all had a sense of where the more critical patients were and what to do.”
Ohio’s Appalachian Counties: Vinton, Gallia, Meigs, and Washington
Compared to the rest of the United States, people residing in the 420 counties of the Appalachian Region have a higher risk of developing cancer and a higher rate of mortality when this occurs. ASCO member Electra Paskett, PhD, Professor of Cancer Research in the Department of Medicine and the College of Public Health of The Ohio State University, has been working with Appalachian communities for many years. These economically distressed communities lack so many things: jobs, grocery stores, cell phone access, transportation, and certainly, access to health care providers. For the independent people of Appalachian Ohio, barriers to care also include distrust of outsiders and a resolve to take care of their own. As one resident told me, “We can use a hand up, but we don’t want a handout.”
Understanding this, Dr. Paskett and her team use what she calls the “give-get” approach to overcome social barriers. She works to increase rates of breast, cervical, and colorectal cancer screening; use of the human papillomavirus (HPV) vaccine; smoking cessation; and access to healthy foods. Electra’s team of researchers meets with local organizations, listens to their concerns, and then asks them to invest what they can to attain their own goals for community health.
At the Gallia County Health Department, in Gallipolis, she introduced us to Patty Toler, RN. Patty described the situation facing her 12 years ago when she took over the Women’s Health Program in a region where high-risk HPV is present in 33.5% of female residents. “We had so many clients with HPV. I would call them and tell them, ‘You have HPV and you have an abnormal Pap [test] and now you need to go to the hospital and have a colposcopy,’ which most of the women couldn't afford to have. We tried sending the clients to Athens to a residents' clinic. We tried giving them gas cards. They had to go in 2 visits. Sometimes that didn't work. Sometimes they didn't use the gas cards; they didn't have cars. So, none of our efforts were helping to actually do the colposcopy.”
Patty turned to Darla Fickle, MA, a native of Appalachian Ohio who works with Dr. Paskett as a Program Director in the Center for Cancer Health Equity at the OSU Comprehensive Cancer Center. Patty and Darla applied for a matching grant to build a colposcopy clinic in the Gallia County Health Department. To raise the required matching funds, the community organized local events—poker runs and bingo—and this money was used to purchase the colposcopy equipment. For a while, physicians from a regional hospital donated their time to perform the screening procedures, and today the clinic has a nurse practitioner on staff. During our visit, Patty introduced us to Dreama Leonard, one of the first patients treated at the clinic, who described what the clinic means to the women in the community. Ms. Leonard explained that, without Patty and Darla, her friends and neighbors “wouldn't have known and wouldn't have gotten care at all. So, 1 life is worth it, but I think there's probably been saved a few more than that.”
Laredo, Texas: Bringing access to cancer clinical trials to the U.S.-Mexico border
Laredo, Texas, sits on the northern bank of the Rio Grande River, directly across from Nuevo Laredo, Tamaulipas, Mexico. A city with a population of 286,000, Laredo is part of a cross-border Laredo-Nuevo Laredo metropolitan area that has an estimated population of 640,000, of which 96% are Hispanic and Latino. There are many challenges to cancer care access in Laredo. According to the last government census, 30.6% of Laredo residents are living in poverty.
Our trip to Laredo was hosted by ASCO members Gary Unzeitig, MD, a breast surgeon and cancer clinical trials specialist, and Eduardo Miranda, MD, a medical oncologist. Dr. Unzeitig came to Laredo in 1983, just after completing his surgery training. Dr. Miranda moved to Laredo from the University of Arizona in 2002. Despite the challenges that include a cross-border population, economic deprivation, and too few oncology providers, Drs. Unzeitig and Miranda were determined to bring clinical trials to their patients. Dr. Unzeitig told us: “It was just about 2002, when Dr. Miranda moved to Laredo. He was the first oncologist in the area. Now we have 3, an all-time high for a population of almost 300,000. That's really underserved.”
Drs. Unzeitig and Miranda credit the services provided by Laredo’s Gateway Community Health Center as the crucial factor allowing them to bring underserved patients into cancer clinical trials. Roughly half of Gateway’s patients have health insurance, such as Medicaid, Medicare, or private insurance plans. The other half, about 15,000 individuals, have no insurance. According to Elmo Lopez, Jr., CEO of Gateway, “We take them all. And we don't really care where they're from: Guatemala, Honduras, Mexico, China, Russia. It doesn't matter if they're here legally or illegally, we don't ask that question. If they don’t have insurance, we ask 2 questions to qualify them for services: What is their family income, and what is their family size? These we use to place them in our sliding fee scale for the poverty guidelines of the federal government. Some pay only $1 per week if that is all that they can do. So, we turn no one away.”
The most moving part of our trip to Laredo was seeing Drs. Unzeitig and Miranda together with their staff and patients and witnessing firsthand how they are all members of a close and supportive community. Here is how Dr. Unzeitig described it: “We've had this annual fashion show for quite a few years. Local businesses pitch in to donate food, a local cosmetology college does hair and makeup, and a local boutique provides the clothing. About 10 or 12 women are featured every year, and their families, the medical staff, and many others attend. It's a big deal. First, I introduce each woman, who walks out in her regular clothes as I talk about her cancer: how long ago she was diagnosed, her stage, what treatment she received, things like that. And then they go back and get all glammed up and come out in really beautiful fashions. And their makeup is done, their hair is done and it's a transformational process for them. There are some people that really stand out. One woman who we cared for I will never forget. She was very poor and didn't qualify for Medicaid or the usual things and so it was kind of like hand-to-mouth getting the drugs and treating her. She had a large family and she was the main provider. At the fashion show, she had already been diagnosed with stage IV breast cancer and it was progressing. And she came out and was the most beautiful woman you could imagine. I'll always cherish the pictures we got of her and her children together. I don’t think her kids ever saw her have so much special attention all for herself, and I'm hoping that that's how they remember her because she died shortly thereafter.”
Pine Ridge and Kyle, South Dakota: The Great Plains Tribal Chairman’s Health Board
The Great Plains Region of the United States is home to more than 130,000 Native Americans and spans the states of North Dakota, South Dakota, Nebraska, and Iowa. Native Americans have a unique relationship with the U.S. government, because they may be members of nations or tribes with sovereignty and treaty rights that are not held by other U.S. citizens. One of these rights is access to health care, which is an obligation that the government meets through its funding of the Indian Health Service (IHS). The goal of the IHS is to assure that comprehensive, culturally acceptable personal and public health services are available and accessible to American Indian and Alaska Native people who are members of 573 federally recognized tribes in 37 states.
We visited Pine Ridge Hospital, the largest IHS facility in the Great Plains Area. The hospital is located 110 miles south of Rapid City, South Dakota, in Pine Ridge, a town with a population of approximately 3,300 that is the tribal headquarters of the Oglala Lakota (Lakota: Wazíbló). Our guides during our visit were affiliated with the Great Plains Tribal Chairman’s Health Board (Chairman’s Health Board). The Chairman’s Health Board is a 501(c)3 not-for-profit corporation whose governing board is made up of leaders from each of the 17 tribes and 1 Service Unit of the Great Plains Region. The organization’s mission is to provide quality public health support and health care advocacy to the tribal nations of the Great Plains.
Pine Ridge Hospital is a modern IHS facility that houses both adult and pediatric outpatient clinics and a 45-bed inpatient unit, complete with operating rooms, a labor and delivery suite, and an emergency room. Unfortunately, Pine Ridge Hospital is also a facility that struggles to adequately meet the needs of its community due to funding and staffing shortages.
Statistics for the Pine Ridge Indian Reservation are grim. The average life expectancy there is 49 years for men and 52 years for women, compared to the U.S. average of 76 for men and 81 for women. Rates of adolescent suicide are 4 times the national average. According to the 2010 U.S. Census Bureau report, Pine Ridge has a median household income of $21,089. This figure places approximately 61% of residents below the federal poverty level. The unemployment rate on the reservation is approximately 80%, and lifestyle factors that increase cancer risk are prevalent. Alcohol use is very high, despite laws forbidding the sale of alcoholic beverages on the reservation. Gina Johnson, a patient navigator for the Great Plains Colorectal Cancer Screening Initiative Program, also explained that tobacco is part of the culture, for example, “at funerals, a bowl of cigarettes is passed around, and everyone is expected to take one and smoke it to honor the deceased.”
We traveled to the small town of Kyle (Lakota: phežúta ĥaká), where we visited the Oyate Teca (Lakota: Young People) Youth Center. There we met with a cancer support group, attended by members of the Oglala and Rosebud Sioux tribes, most of whom are cancer survivors, who meet regularly to discuss the challenges of dealing with a cancer diagnosis. The meeting was hosted by members Cecelia and John Haas and included a wonderful meal—chili, ham and beans, beef and barley soup, and fry bread—all cooked by John. The discussion during dinner focused on a range of issues associated with access to cancer care. John summed up the situation as, “when you make the choice to live, there have to be tradeoffs.” A privileged few support group members have private health insurance. These people, however, must travel the 90 miles to Rapid City to see an oncology provider and much further if additional expertise is required. Cecelia described how she just returned from driving a friend to the Mayo Clinic for a consultation, a trip of 1,100 miles that was challenging because of a blizzard.
ASCO member Daniel Petereit, MD, FASTRO, is a radiation oncologist who practices in Rapid City, South Dakota, the nearest facility offering specialty oncology services to the community of Pine Ridge. “Our Native American citizens have the worst outcomes after a cancer diagnosis of any racial/ethnic group in the U.S.,” he explained. “They are at high risk, with rates of tobacco smoking at 50%, and are diagnosed at later stages. Our regional cancer center has the technology in place, so we developed Walking Forward [a program to address disparities in cancer care] to improve cancer outcomes for this underserved population.” Over the past 16 years, Walking Forward has offered culturally tailored patient navigation programs designed to bring Native Americans into prevention and screening clinical trials. Dr. Petereit describes the challenges that he faces. “When I first came to the region, I was this white guy from Wisconsin, and why would they trust me? Pine Ridge Reservation had seen a lot of historical trauma, and so people were rightly suspicious. But I’ve been here 20 years and I now know a significant number of people in the area. I often see them at the lake or at the hockey rink and they know me. I try my best to work through the challenges of their cancer diagnosis and treatment. It is still difficult, however, to maintain trust and relationships when grants run out and programs change.”
Queens Hospital Cancer Center, Queens, New York: Speaking their language, overcoming barriers
Queens is a borough of New York City that by itself ranks as the 5th largest city in the United States, with more than 60% of its 2.2 million residents belonging to minority groups. We visited Queens Hospital, 1 of the 11 hospitals that make up NYC Health + Hospitals, the largest public hospital system in the United States. Ninety-two percent of their patients are minorities. Our host was ASCO member M. Margaret “Peggy” Kemeny, MD, founding Director of the Queens Cancer Center at Queens Hospital and Professor of Surgery at Icahn School of Medicine at Mt. Sinai. Dr. Kemeny trained in surgery at Columbia School of Physicians and Surgeons, graduating in 1979 as one of very few women in surgery. She then completed 2 years of cancer research in the Surgery Branch at the NCI. She also developed a passion for caring for the underserved and for research to eliminate health disparities. In 2001, she moved from Stony Brook to Queens Hospital to establish a cancer treatment and research program.
When Dr. Kemeny arrived at Queens Hospital, 86% of the cancer patients seen there had no health insurance. Dr. Kemeny established a multidisciplinary clinic and convinced the hospital to devote space to a cancer program. She explained that “we had to be able care for people whose biggest problem might not be their cancer diagnosis but something else. Some were homeless, some worried about having food for their kids.” She built and staffed an infusion unit, making it an inviting place for patients and their families to spend the hours necessary for their treatments, often including an area for small children. To help both her patients and the hospital find necessary resources, Dr. Kemeny recruited 3 social workers and a financial advisor. She believes that the American Cancer Society made a great contribution to the center by adding a patient navigator to the staff. She said that, “our navigator makes sure that we don’t lose the people who can’t get through the system on their own, and that’s most of them.” It is now a requirement that every new patient meet with both a social worker and the patient navigator during their first visit. This establishes a relationship with a team member who then calls them the day before each scheduled visit to make sure that they remember and have a means of travel to their appointments. With 108 languages spoken by the hospital’s patients, these meetings and calls often require translators. Shortly after the cancer center opened, the staff conducted an anonymous survey of clinic patients, asking if they ever either skipped medication doses to buy food or went without meals to buy medication. By this survey, 75% of clinic patients were identified as having food insecurity. In response, a food pantry was added to the cancer center.
The past 18 years have seen great progress for the Queens Cancer Center. The center sees approximately 2,000 new patients each year and, since 2002, has enrolled almost 1,000 patients on 87 clinical trials. More recent additions have included services for pain management, palliative care, and a psychologist specializing in cancer care. Community outreach through libraries and religious institutions has increased rates of cancer screening and early detection. Many challenges remain, however. Currently, 52% of Queens Hospital patients are covered by either Medicaid or Medicaid Managed Care plans, and 17% are uninsured. In addition, patients still present with late-stage disease at a frequency of 1.5 to 2 times the national average. Dr. Kemeny also feels the strain of retaining staff members who meet her high standards: “We get young people who are just fantastic, and they get even better after they practice for a while in this incredible environment. But then we lose them to other cancer centers because we can’t pay comparable salaries.” The most remarkable feature of our visit, however, was the feeling of purpose and hopefulness that characterized all our interactions with the cancer center’s clinicians, staff, and patients.
These stories remind us that cancer is so much more devastating when it falls upon an individual who is already struggling to meet their basic needs. While they include stories of success in the face of significant challenges, they also remind us that we still have a long way to go to provide all those who are affected by a cancer diagnosis with the care and support that they desperately need. As care providers, we must do all that we can to make sure that underserved patients are welcome in our clinics, and these stories from ASCO members provide a roadmap for making this possible. They show that success is achieved when cancer care providers are fully integrated into the communities that they serve, are deeply committed to the health and welfare of their patients, and are willing to reach outside of the health system to make it possible for patients to receive care. Federal funding is another essential requirement for success. Philanthropic organizations can have a tremendous impact and so can partnering with volunteers in faith-based organizations, schools, libraries, and other local programs. Finally, care for the underserved is an obligation of our entire society, and we must continue to make this among our highest priorities.