Getting Cancer Care in Rural America
If you’ve been diagnosed with cancer and are among the 1 in 5 Americans who live in a rural area, you may face challenges in getting the care you need because of where you live.
The first step is to work with your primary care doctor to find specialists with experience in treating your type of cancer at the stage at which it was diagnosed.
Once you know who could treat your cancer, then come other considerations:
- How you will get to appointments
- Where you will stay when you’re at a cancer facility for treatment
- How you will ensure you get proper follow-up care and handle daily life while you’re recovering
Anytime travel is involved, there are a lot of costs. Assistance is available to help rural cancer patients overcome barriers to treatment. This includes lodging grants, help with airfare, and rides provided by volunteers to take you to oncology centers. These services, along with a helpline that operates 24 hours a day, are available through the American Cancer Society.
More options for at-home follow-up care are now available in some areas. This happened when the pandemic prompted state and federal agencies to lift restrictions on telehealth usage. The Centers for Medicare & Medicaid Services also allows hospitals more freedom to care for cancer patients at home following surgery, radiation, and chemotherapy treatment through video appointments and nurse visits.
“It really was a silver lining of the health crisis,” says Kathi Mooney, PhD, RN, a co-leader in cancer control and population sciences at the Huntsman Cancer Institute at the University of Utah.
“Everybody agreed we don’t want more people in the hospital and cancer patients are more vulnerable,” Mooney says, “so it forced people who weren’t early adopters of hospital at home to try it.”
Bridging the Gap
The Institute started its Huntsman at Home program in 2018 for adults with cancer. They can’t get certain treatments at home. But the program can help cancer patients with symptoms such as nausea, vomiting, or dehydration at home – as well as providing supportive care, palliative care, and hospice to patients in their homes.
Mooney’s research shows that the program effort reduced hospitalizations for cancer patients by dispatching nurses to address issues such as dehydration and chronic pain early in the home. It began by serving people within a 20-mile radius of the Huntsman Cancer Institute and has since branched out to also include three rural counties in southeastern Utah.
The program is part of a push by hospitals and advocates to reduce disparities in treatment between urban and rural cancer patients as the nation’s population ages. (Many cancers become more common later in life.)
Lack of Oncologists in Rural Areas
Location makes a big difference in how available cancer care is.
About 2 of every 3 counties in the U.S. have no oncology providers whose primary practice site is within that county, according to a 2019 analysis published in JCO Oncology Practice.
Limited access to providers in rural areas – along with low recruitment to clinical trials – means that people are more likely to be diagnosed at later stages, less likely to get adequate treatment and follow-up services, and have poor health outcomes afterward, a second report concluded.
But the research also shows that when people living in rural areas get similar care to those who live in or closer to urban areas, those gaps close.
Hospitals across the U.S. are working to fill gaps in treatment between those living in cities and their neighbors in the country. These include a network of 71 cancer centers designated by the National Cancer Institute (NCI) in 36 states. These NCI-designated cancer centers work on clinical trials involving thousands of people with cancer, as well as providing cancer treatment.
Momentum is building to expand such efforts, including those that focus on strategies to improve access to screening for all types of cancer, says Karen Knudsen, PhD, chief executive officer of the American Cancer Society and the American Cancer Society Cancer Action Network.
“Without question, we have made significant advances in cancer treatment,” Knudsen says. “We’ve seen a 32% reduction in mortality since 1991 because of breakthroughs in the way we manage some 200 diseases we call cancer.”
“It’s more important than ever to catch cancers early,” Knudsen says. “We need to determine what are disruptive models that can give earlier access to detection, prevention, and oncology care — a different model is needed.”
Medical professionals are working to advance screening methods that can detect cancer cells in someone’s bloodstream and to develop wearable devices that may also find the disease early, Knudsen says.
There are also oral chemotherapy medications that could mean less travel. For some cancers, these may be important in your treatment. But they are very strong medications that have special instructions and require monitoring, as they can have serious side effects. Oral chemotherapy can be expensive, so check with your insurance company to see what it covers and what you would pay.
Telehealth’s Challenges
Going to a doctor’s appointment can happen online. But access to telehealth may also be a challenge for rural residents who cannot afford a computer, cell phone, or WiFi connection, Knudsen says. Broadband service is often unavailable, or unreliable, in many rural areas.
What’s more, some things are best done in person.
“There is nothing like visiting patients in their home to understand the context of what it means for them to have cancer and to have to seek cancer treatment,” Mooney says. “We have seen the need to more closely work with food banks to make sure the dietary needs of cancer patients receiving cancer therapy are met.”
After further evaluation of the Huntsman at Home program in southeastern Utah communities, Mooney hopes to expand it in Utah and to Nevada, Idaho, Wyoming, and Montana.
Besides technology, there are other issues.
Funding for innovative hospital at-home programs that expanded during the pandemic may not continue if the CMS waiver – which allowed for reimbursement of services provided to Medicare patients at home — is not extended, Mooney says. The CMS waiver is set to expire in July.
When it comes to private insurance, the current fee-for-service model doesn’t adequately address the cost of providing acute care in the home. And there are many regulations on how many nursing visits patients can have per “episode of illness.” These things must be addressed to help the hospital at home program expand in other states, Mooney says.
“The whole dialogue needs to be about, if this is a more value-based service, how do we pay for it?’” Mooney says. “We have to get families who have experienced it to say, ‘This is the kind of care we want,’ and employers to say, ‘This helped our employees recover and get back to work.’”
