By Elizabeth Zach, RCAC staff writer and USC Center for Health Journalism Fellow
All children get stomachaches, Melanie Whelchel thought when her 3-year-old son Jessen suffered yet another one in 2013. At the time, she blamed a virus, although Jessen had been vomiting. Even an X-ray of a lump on Jessen’s abdomen indicated harmless constipation.
But during one feverish middle-of-the-night attack, with Jessen curled up in agony, a frantic Whelchel rushed him to an emergency room in Chico, where they live. The next day, an ultrasound exam revealed a devastating diagnosis: stage 4 neuroblastoma, an advanced stage of a cancer that affects immature nerve cells and is one of the most common forms of cancer to strike young children.
Whelchel learned that no hospital in her area offers comprehensive pediatric cancer care. For that, she would have to drive two to three hours, to Sacramento and San Francisco.
“My father had died of leukemia just six months earlier, so I understood what was involved,” Whelchel said. “A lot of hospital visits, a lot of time and patience.”
The American Cancer Society estimates that 173,200 new cancer cases will be diagnosed in California in 2016. For residents in the state’s vast rural areas, where nine hospitals have closed in the past decade, a cancer diagnosis can be especially frightening because the illness often requires frequent, lengthy and debilitating treatment, making travel to receive therapy an added stress at an already difficult time.
That travel can be especially challenging for low-income patients served by Medi-Cal, California’s version of Medicaid. State lawmakers are now considering a bill that would require Medi-Cal to pay for transportation to and from doctor’s appointments and other types of nonemergency care.
Rural areas lack support workers
The issue, often overlooked by policy-makers, prompted the journal Oncology late last year to publish the study “Challenges in Rural Cancer Care in the United States.” While noting innovative methods for treating cancer patients in remote areas, including outreach clinics, virtual tumor boards and physician retention programs, the authors also highlighted a “projected increase in demand for cancer care due to the aging population” in rural America.
“Typically, a cancer center has social workers who see that patients are getting the support—emotional support, financial counseling—they need, or even transportation to treatments, organizing a place to stay,” said Dr. Mary Carlson, the Oncology study’s lead author. “But in rural areas, there just aren’t many social workers, period, let alone an oncology social worker, to connect patients to resources. That was probably the biggest eye-opening thing for me.”
Rosemary Cress, director of the Cancer Registry of Greater California, which tracks patients in 48 counties the registry identifies as rural, says that while mortality rates appear about even between rural and urban cancer patients, the burden of accessing screening and treatment centers remains a significant problem outside cities.
“I don’t know that there is any simple answer to why mortality rates don’t differ more between urban and rural areas,” Cress says. “Despite distance from care, most patients seem to be able to access the care they need. There are people in rural areas who are able to travel to obtain care, and there are patients in urban areas who are unable to obtain good care because of financial barriers.”
Long road to remission
Along with five painstaking surgeries to remove the tumor wrapped around Jessen Whelchel’s left kidney and abdominal aorta, his treatment required six rounds of chemotherapy, a stem cell transplant, radiation and antibody treatments—in all, 15 months of care and travel. He received chemotherapy at Sutter Memorial Hospital in Sacramento, and the rest of his care at the University of California at San Francisco, where his mother continues to take him every six months for checkups. His disease is in remission, says his mother, adding that he is “a very happy child.”
From the beginning, Whelchel—a single mother—was at her son’s side. But she had to search for lodging in San Francisco during Jessen’s treatments. Insurance didn’t cover that. Her boss advised her to take short-term disability leave from her job as a child therapist with Colusa County. She sold her house to save money once she understood she would have to pay $1,000 per month for health insurance and moved in with her mother, who also offered her emotional support.
But most difficult, Whelchel says, was finding resources with no help.
“The American Cancer Society would give us $500 to pay for gas,” she says, “but it took me a while to find out about that. I also had friends who held fundraisers, and some paid for me at one point to stay in a hotel in San Francisco for 2½ weeks during one of Jessen’s treatments. But there’s no single resource to tell you what to do in this kind of situation.”
Because cancer among children is rare, treatment centers are fewer.
“Pediatric oncology is so specific that to be able to recruit and retain a pediatric oncologist in a small rural community would not be feasible,” explained Peggy Wheeler, vice president for rural health care at the California Hospital Association. “This is not just true of rural areas, but also of suburban areas, because the field is so unique a specialty.
“You place specialties where you will get volume. You would not be able to build a business model.”
Better for adults
There are more options for adults undergoing cancer treatment in rural Northern California, said Lesley Camire, director of oncology services at Mercy Regional Cancer Center in Redding. The hospital serves nine counties and coordinates assistance for transportation, meals and lodging. It also organizes six support groups, four for patients and two for caregivers.
Polly Poerink, a breast cancer survivor in Red Bluff, moderated an informal cancer support group until a few years ago when, she says, participation dwindled. She reckons the internet has filled the void for many cancer patients living in remote areas who seek emotional support.
“If we were to have a patient who was maybe 45 to 90 minutes east or west of us,” Poerink says, “it was often a problem for them to have one more thing to do following a radiation or chemotherapy treatment. You’re exhausted.”
Michele Woods, an oncology nurse at Mercy, and her colleague, Batina Balma, a social worker, said that while their hospital is in a rural area, services are plentiful and varied. Moreover, the hospital reaches out to patients immediately following their diagnoses.
“We helped reconnect one patient in Siskiyou County, a paraplegic man with kidney cancer, with his family as he underwent treatments,” Woods said. “Another patient, a woman fighting bladder cancer, lived in a rat-infested house. We arranged for an exterminator, as well as volunteers to clean and paint the house exterior.”
“We really do go to the mat for patients,” Balma added.
Marcellus “Sonny” James received similar support in 2012 following his renal and prostate cancer diagnoses, although he notes the challenges of living in a rural area while battling chronic illness.
James, who at age 71 still ranches cattle “to make ends meet,” lives in Porterville on the Tule River Indian Reservation in Tulare County. His wife drives him three hours each way to the University of Southern California Medical Center and Cedars Sinai Medical Center in Los Angeles for his oncology appointments, which have included three surgeries, chemotherapy and follow-up scans. The Indian Health Service covered James’ treatment and gave him $100 for the fuel to get him to Los Angeles and back to Porterville.
“What I would like to see some day is that rural communities have access to the same level of care as in urban areas,” said Peggy Wheeler of the California Hospital Association. “I would like to see that they have easier communication with all kinds of specialists, even via telemedicine.”
Such services nearby, said James, would ease his burden. But for now, he said wearily one afternoon by phone as he and his wife prepared to leave Cedars Sinai for home, “I just keep putting one foot in front of the other.”
Reprinted with permission from Record Searchlight – Redding.com.
This article was produced as a project for the USC Center for Health Journalism’s California Fellowship. Other stories in this series include: What hospital closures mean for rural California and The myth of telemedicine?