Great strides have been made against cancer in recent decades, with certain cancers experiencing significant drops in mortality and the racial divide narrowing.1 However, not all disparities have improved, most notably the rural cancer care gap.
“While we are closing some gaps, we are not closing all gaps, and perhaps we are allowing some gaps to widen,” said Cliff Hudis, MD, FACP, FASCO, chief executive officer of the American Society of Clinical Oncology (ASCO), as he opened up a convening of physicians, advocates, and rural health experts for an in-depth conversation on closing the gap that exists in rural America.
Although 19% of the US population resides in rural areas, just 6% to 7% of oncology practices have a location that covers a rural area, inhibiting access to care among older, sicker, and poorer populations, explained Monica M. Bertagnolli, MD, FACS, FASCO, president of ASCO; professor of surgery at Harvard Medical School; and associate surgeon at Brigham and Women’s Hospital and Dana Farber Cancer Institute.
Problems with access to care don’t just include fewer providers in the area and greater distances traveled to get to these providers. Patients in rural areas also often lack the resources needed to get to an appointment, including transportation. As a result, their cancers are diagnosed in later stages and their mortality rates are higher—despite cancer incidence being comparable2 between rural and urban settings.
In recognition of these disparities, Hudis announced ASCO’s launch of its Rural Access to Cancer Care Task Force,3 which will both examine major drivers of rural cancer care disparities and recommend 4 concrete actions: provider education and training, workforce development, tele-oncology, and research.
Efforts like this have started to gain traction as more federal, state, and local officials recognize the need for effective and sustainable solutions. Walking through some of these solutions, a panel of experts highlighted 3 themes: local efforts, clinical trial access, and telehealth.
“Local problems need local solutions,” said Electra D. Paskett, PhD, Marion N. Rowley Professor of Cancer Research, College of Medicine, The Ohio State University. “When we go into communities, we go in as partners and work with community members because they not only understand the problems but also the causes of the problem and the solutions.”
It’s about building local capacity, she explained. This means educating cancer coalitions within the community and utilizing community hubs such as churches to develop programs to address risk factors like obesity, sugar intake, and lack of physical activity. Paskett also emphasized the importance of utilizing all members of the care team, which include not just the doctor but nurses, pharmacists, patient navigators, and community health workers.
Alan P. Lyss, MD, oncologist, Missouri Baptist Medical Center and Heartland Cancer Research, added that providers in rural areas have close relationships with their patients because they’re involved in the community. “Local providers have a stake in whether or not patients develop cancer,” he said. “These are their community members. They care if a woman comes in with a benign tumor [and] ends up getting cancer. It’s their community and their friends.”
Offering a federal perspective, Robert T. Croyle, PhD, director of the Division of Cancer Control and Population Sciences at the National Cancer Institute (NCI), explained how efforts in the community can be aided by federal programs. According to Croyle, NCI has provided supplemental funding4 to 21 of its NCI-designated cancer centers to create solutions in rural areas, and another round of funding is on its way. He explained that this is a way to get rural communities on the radar screens of the directors of NCI-designated cancer centers.
The NCI has also changed the expectations of programs it funds, requiring NCI-designated cancer centers to have a program on community outreach and engagement. Now, said Croyle, the institute will also require the cancer centers to understand and define their catchment population and to better collect data on their characteristics in order to better serve them and their needs.
Lyss then highlighted the importance of providing access to clinical trials for rural populations, which he said requires 3 actions: providing access and education, broadening eligibility, and removing financial impediments. Referencing his own Heartland Cancer Research, which is part of the NCI Community Oncology Research Program, Lyss explained that three-fourths of its sites span communities where more than 30% of the population is rural. Through the program, oncologists with access to clinical trials are sent to rural communities to train nurses on research methodology and how to handle investigational drugs. This, he said, galvanizes enthusiasm and creates advocates within the community to get patients involved with clinical trials.
Citing higher rates of comorbidities and second cancers in rural communities, Lyss argued that clinical trial criteria need to be broadened and commended ASCO’s and the FDA’s efforts to expand criteria.5 With regard to financial impediments, Lyss explained that Medicaid is often the primary provider for rural populations and is the only major insurer that doesn’t require routine costs of care associated with clinical trial participation to be covered.
Although telehealth is often touted as a way to reach these populations, the panel agreed that this isn’t the reality, with many communities lacking the broadband capabilities to use these services.
“The good news is, knowledge is exploding. But the bad news is that it’s traveling very slowly, particularly to underserved communities, and we will never have enough experts training to manage the long-term complex diseases that require complex management,” said Oliver Bogler, PhD, chief operating officer of the ECHO Institute at the University of New Mexico. However, one use of telehealth has been able to reach these populations through the education of providers: Project ECHO.6
Project ECHO is a partnership model that links specialist teams at an academic hub to providers in local communities. “It’s people finding local solutions to local issues,” said Bogler, who explained that the model includes caretakers throughout the continuum of care. Through the program, these specialty care teams train primary care clinicians to be able to perform specialty care services and increase their capabilities to better serve their patients.
As direct-to-consumer (DTC) testing gains momentum among consumers, there is a need for educating consumers on their DTC testing results and validating these results with confirmatory testing in a medical-grade laboratory. Spearheading this mission, My Gene Counsel, a digital health company that provides digital genetic counseling information, has formed a partnership with Ambry Genetics to offer a solution for these consumers. At the same time, insurers are warming up to the idea of covering confirmatory testing and seeing the benefits for their insureds.
The program, meant for people with strong personal or family histories of cancer who have done a DTC test, offers patients a Living Lab Report explaining their DTC results and how they differ from medical-grade test results they may get through a genetic counselor or their provider. Patients then begin the verification process by providing their personal and family histories of cancer, as well as their insurance information. From there, the program determines if a person would be covered for verification testing by their insurance, and if not, they discuss what their potential out-of-pocket costs would be.
Patients next speak with a certified genetic counselor by phone who helps them decide if they need verification testing, and if so, which one. If the consumer wishes to move forward with verification testing, a test kit is sent directly to their homes. After sending the kit back to Ambry Genetics, the consumer is provided with a final Living Lab Report from My Gene Counsel that explains their final test results, which they can bring to their provider. They can also opt for another counseling session by phone if they wish.
Recognition of the need for a program like this became evident as 23andMe gained FDA authorization1 for its DTC test that assesses 3 BRCA1/BRCA2 mutations that are most common in those of Ashkenazi Jewish descent. In January, the company also gained clearance for its DTC genetic test2 reporting on the 2 most common genetic variants associated with MUTYH-associated polyposis, a hereditary colorectal cancer syndrome. 23andMe also states that all of its results should be repeated in a medical-grade laboratory before medical decisions are made.
While rolling out the pilot, Ellen Matloff, MS, CGC, president and chief executive officer of My Gene Counsel, and her colleagues were met with the finding that many consumers have misconceptions about what these DTC tests offer. “One of the things we found was that for some consumers who need help based on strong personal or family history, instead of getting medical-grade testing, they’re doing 23andMe, and they’re using limited resources to pay for kits that won’t give them the answers they need.”
She gave the example of a woman participating in the program who had a strong personal history of breast cancer and a family history of ovarian cancer and had debated getting 23andMe kits for several members of her family to determine if they carried BRCA mutations. With the woman not being of Ashkenazi Jewish ancestry, the tests would have most likely come back negative for the 3 common Jewish BRCA mutations, giving the family false reassurance.
Even amongst those of Ashkenazi Jewish ancestry, a negative 23andMe BRCA test result is not the end of the story, as the test only releases the 3 most common BRCA mutations associated with the ancestry. Many people of Jewish ancestry with strong histories of cancer carry an uncommon mutation in BRCA or a mutation in one of dozens of other cancer genes, which 23andMe does not return.