Margaret McBreairty of Allagash traveled from one military base to another during her decade of service in the U.S. Air Force and later journeyed to Iraq and Afghanistan to work as a private contractor. But after all that, driving to Boston for medical care was nearly her undoing.
McBreairty, 58, had survived breast cancer, but the disease returned and spread to her bones, sending her into emergency spinal surgery this spring. Multiple return trips to Boston soon followed to treat complications, and McBreairty made the roughly eight-hour trip south every three weeks for five months.
“I absolutely will not lie about it,” she said by phone from her home overlooking the St. John River. “It caused me to lose my damn mind.”
As her doctors attempted to repair leaking at the incision site, McBreairty, who is now unemployed, was forced to cover the costs of gas, tolls and hotels. She estimated it cost her $1,000, on top of her $2,000 co-pay, for all her trips.
“It is stressful,” she said. “I told them it was creating a whole brand new form of cancer in my body.”
In addition to being an added stressor during an already trying time, difficulty traveling long distances for treatment has been shown to affect the treatment that patients pursue. Chemotherapy, for example, typically requires repeated visits, and transportation difficulties have been shown to affect the likelihood that cancer patients receive it.
The transportation challenge is a symptom of a broader reality: Maine’s rural areas generally have both the highest rates of cancer and the fewest resources to treat the disease.
Washington County offers a stark example of the geographical barriers patients face. It has the highest death rate from cancer in the state, but not a single oncologist practices within its 3,000-plus square miles, according to a September 2017 study conducted for the Maine Cancer Foundation by Market Decisions Research.
It’s not alone. Lincoln and Sagadahoc counties and southern Aroostook County also have no oncology providers, according to the study.
In a state where cancer is the leading cause of death among adults and an estimated 8,600 new cases will be diagnosed in 2018, helping patients make it to and from their medical appointments has taken on greater urgency. A number of organizations throughout the state have convened to pursue potential solutions, ranging from improving outreach to patients about existing transportation options to the more daunting challenge of attracting more cancer doctors and treatment facilities to rural areas.
Miles to go
Nadine Lewis of Ellsworth survived cancer in 2006 and still struggles to find transportation for care related to that diagnosis.
“Having medical problems is hard enough,” she said. “When you have to travel, you might not have the amount of energy or the stamina that an average person would have, so it’s really, really important to keep your energy to make those trips.”
Lewis works at the Beth C. Wright Cancer Resource Center in Ellsworth, a nonprofit organization that supports people affected by cancer in Hancock and Washington counties, including linking them with transportation providers.
Michael Reisman, the center’s executive director, broke down the challenges that patients needing care face.
“If you live in Calais, you’re traveling 100 miles one way to get to Brewer for radiation treatment,” he said, referring to EMMC Cancer Care’s oncology center.
Depending on the type of cancer a patient has, radiation treatment typically involves five treatments per week for four to eight weeks, he said. If a patient travels 1,000 miles per week for six weeks, in a car that gets 30 miles per gallon with gas ringing up at $2.80 per gallon, that totals a hefty $560 for the course of treatment. With many patients also hit with co-pays, high insurance deductibles and time lost at work, it’s no small added expense.
Then there are patients with no access to a car. Many rely on transportation organizations including community ride groups and contractors that serve MaineCare beneficiaries. Most of these providers are small, serving fewer than 50 patients per year and offering free and discounted fares, according the Maine Cancer Foundation study. Nearly half of the 22 transportation providers the study surveyed reported turning away patients over the previous year because they lacked the resources to meet demand.
In 2015, more than 6,000 patients needed transportation to chemotherapy, radiation and immunotherapy treatments, according to the study. That figure almost certainly includes overlap among patients who required more than one form of treatment.
Cancer patients who receive such transportation services travel an average of 70 miles per round trip, the study found. That doesn’t include travel outside the state, which is common for patients, such as McBreairty, who must travel to Boston or elsewhere to meet with specialists.
Anecdotally, patients say that the time, energy and money required to travel for appointments weighs heavily on them, said Aysha Sheikh, director of programs at the Maine Cancer Foundation.
With some patients, “They just say, ‘Forget it, I’m not going to do this,’” she said.
Sheikh said she’s even heard of breast cancer patients opting for a double mastectomy rather than contend with the burdensome travel associated with less drastic courses of treatment.
Easing the hardship
Of the approximately 200 oncologists in the state, nearly half are located in Cumberland County, the study found. But even patients living in Maine’s most populous county struggle with transportation, such as those who use wheelchairs and need assistance getting out of the door and into a taxi or van.
“While the distances that need to be traveled by people in Aroostook County and Down East in general are so far, there are fewer patients there than … in areas of southern Maine, where there is still a need,” Sheikh said.
To help meet that need, the Maine Cancer Foundation is preparing to award a round of grants to organizations that provide transportation to cancer patients throughout the state. The foundation also convened a task force dedicated to the issue.
In addition to expanding funding for transportation providers, the study recommended partnering with hospitals to provide transportation for their patients, improving public transportation, and boosting the capacity of volunteer and community-based transportation networks.
“So many of these organizations are volunteer organizations who don’t have enough funding,” Sheikh said.
The transportation issue prompted a 2015 study published in the journal Oncology, which noted a “projected increase in demand for cancer care due to the aging population” in rural areas. It highlighted “a number of promising strategies and interventions,” including having specialists visit rural areas for regular clinics.
In Iowa, such arrangements between rural clinics and larger urban practices lowered the median driving time to the closest oncology clinic from 52 to 19 minutes and boosted the rate of chemotherapy administration among rural patients with invasive cancers from 10 to 24 percent, the study found.
The authors also highlighted efforts to connect patients with oncologists remotely through telemedicine technology, and using grant funding to help oncologists who practice in underserved areas to repay their medical school loans.
McBreairty has cut back on her trips to Boston after connecting with a wound care specialist at the Maine VA Medical Center in Augusta, whom she hopes will successfully treat her surgical complication, a persistent leaking at the incision site. But she still sees an oncologist in Portland and said she feels lucky to have family in southern Maine to stay with after her appointments. Some cancer patients in her area travel 2½ hours one way to Presque Isle for radiation treatment, she said.
“I think that’s horrendous,” McBreairty said. “I don’t know that I could do that.”
And despite the hardships of her travel to Boston, those doctors saved her life, she said.
“The alternative to this treatment is to lay down dead,” she said. “So I guess I’ll get treatment.”
This is the second piece in an ongoing look at the prevalence of cancer in Maine, which is the No. 1 cause of death among adults in the state. The first piece explored high rates of cancer among Maine children. If you have an idea for a story, contact Jackie Farwell at email@example.com.
Maine Focus is a journalism and community engagement initiative at the Bangor Daily News. Questions? Write to firstname.lastname@example.org.