On the Road to Recovery: Traveling for Cancer Treatment

ELIZABETH NODDIN spent months away from home to receive an experimental treatment for acute promyelocytic leukemia. PHOTO BY JUSTINE JOHNSON

ELIZABETH NODDIN spent months away from home to receive an experimental treatment for acute promyelocytic leukemia. PHOTO BY JUSTINE JOHNSON

Elizabeth Noddin received her first big shock when doctors diagnosed her with acute promyelocytic leukemia at the age of 22. She had gone to the doctor because she had started bruising easily, but she had just completed her fourth year of intercollegiate field hockey and felt perfectly healthy.

The second shock came when her oncologist suggested that she travel four hours from her home in Farmington, Maine, to receive her treatment at Dana-Farber Cancer Institute in Boston. The standard of care for her condition — all-trans retinoic acid plus chemotherapy — produces cure rates in excess of 80 percent, but doctors at Dana-Farber were participating in a trial that seemed to generate higher cure rates while subjecting patients to less toxicity by replacing standard chemotherapy with arsenic trioxide.

“The prospect of spending several months in a distant hotel room depressed me almost as much as the initial cancer diagnosis. I was one school year away from my master’s in occupational therapy, and I had convinced myself that I could attend classes and maintain a semi-normal life while I was receiving treatment,” says Noddin. Her therapy at Dana-Farber entailed month-long treatments, every other month, for nine full months, starting in 2014 and continuing into 2015.

Noddin had plenty of company on the road last year. The National Cancer Data Base estimated that more than 250,000 Americans would travel more than 40 miles for cancer care in 2015. Most of them, like Noddin, did so in hopes of finding better treatment than they could have closer to home, but patients should not undertake such a choice lightly.

First, it’s important for patients to determine whether the facilities where they hope to be treated are within the networks of their health insurance plans — and, if not, whether their insurers are willing to cover the care.

Then, it takes plenty of research to determine when distant facilities are really likely to offer better care. Patients should also consider how they will find the (considerable) extra money they’ll need to pay for their travel and the (considerable) extra support they’ll need to maintain their spirits.

Luckily, for those who do decide to travel, there are resources designed to provide financial, emotional and practical support. Hotels provide free rooms, hospitals plan trips and offer counseling services, patient advocacy groups offer support groups and financial help, and volunteers cook meals via nonprofits such as the Heimerdinger Foundation in Nasvhille or Food Outreach in St. Louis.

“Going to Boston meant abandoning my normal life and leaving the people and things that gave me comfort at the very time I needed them most,” says Noddin, who spent most of her time in Boston staying for free at a Hope Lodge operated by the American Cancer Society (ACS). “It was a hard decision, but it turned out to be a good decision because I got great care, and because there is so much support available to people in my situation.”

WHY TRAVEL FOR TREATMENT?

The clearest case for travel arises when the desired regimen for a patient’s cancer requires a device, treatment or expertise not widely available. This can happen when a cancer is rare or when a technique like proton beam therapy — available at just 17 medical centers in the U.S. – is preferred. Patients also may travel – even if only for diagnosis and treatment recommendations – to large cancer centers to take advantage of multidisciplinary clinics.

In other cases, patients must research to determine whether traveling for care will be beneficial.

When a standard treatment consists strictly of medication, a patient might assume that every provider is about equally capable of administering it, but specialists may take a more nuanced approach. Take non-small cell lung cancer, for instance. In stage 2 disease, there are choices about which maintenance chemotherapy to use after surgery, and knowledgeable doctors will be aware of which is best supported by data from studies. In addition, any doctor treating later stages of the disease should be aware of the need to test patients for mutations that could make them eligible for targeted therapies. It can also help if doctors are acquainted with clinical trials for which patients might be eligible.

When the standard treatment involves surgery or radiation, a specialist who performs that treatment 100 times a year may do a better job than a generalist who performs it five times a year. To help distinguish between surgeons or radiologists, patients can ask for their success rates with the treatments in question. Patients may also want to consider where a doctor practices and what their patient volumes are, as well as whether the cancer center has been rated by state, consumer or other groups or recognized by a nationally accrediting body such as the National Cancer Institute (NCI), and what kinds of support services it offers.

Travel’s benefits are also uncertain when patients undertake it to participate in clinical trials. Up to half the patients in any given randomized trial will end up in the control arm and receive the standard care that they would have received at home — although sometimes these patients enjoy a higher level of monitoring because they are part of a trial; in addition, once a new treatment is proven to be working, patients in the control arm may be allowed to cross over into the experimental arm. Patients in either arm of a randomized trial can’t predict whether they’ll fare better than they would have at home, and outcomes are also uncertain when patients join non-randomized trials, which are usually more preliminary with less known about a drug’s effectiveness and safety.

On the quality-of-life side of the equation, patients must weigh the extended life they expect to get from better treatment against the time they’ll be spending away from their loved ones. Some will conclude that it makes more sense to be treated close to home.

“There are very few hard-and-fast rules that patients can use to decide whether travel is justified. Patients with a cancer diagnosis should probably visit a few places that specialize in their cancer and compare the treatments proposed by the specialists,” says Melissa Haglund, an intake physician for Cancer Treatment Centers of America (CTCA).

“In some cases, the proposed treatments will differ substantially, and any patient who does some research and asks questions will have a good basis for choosing among them. In other cases, every practice will propose exactly the same treatment, and the question then becomes whether the patient thinks one practice will execute the treatment better or provide a better overall experience than the others,” says Haglund, who works at CTCA’s facility in suburban Chicago. “A lot of it comes down to the reputation of the center or just the gut feel about the quality and compassion of the provider and the services offered.”

Patients who wish to find a top treatment facility can go online to access comparative rankings from several organizations:

> consumerreports.org/cro/2013/01/how-to-choose-a-hospital/index.htm

> medicare.gov/hospitalcompare/search.html

> whynotthebest.org

> http://health.usnews.com/best-hospitals?ref=home.

want to focus on designated NCI cancer centers, which perform a large percentage of all the research that takes place in the U.S.. To learn more, they can visit cancer.gov/research/nci-role/cancer-centers.

A LOT TO CONSIDER

Once patients have decided to travel for treatment, their research is really only beginning.

“Confidence in your medical team is only one of the three big issues that patients need to weigh when considering where they should receive cancer treatment. The other two are the total cost of care and the availability of support,” says Wendy Griffith, senior social work counselor at MD Anderson Cancer Center in Houston.

“It is very hard for patients who have just been diagnosed with cancer to truly appreciate just how long cancer treatment can last and how much it can strain their finances and their relationships. When people announce they have cancer, it’s common for people to come out of the woodwork and volunteer to help, but this enthusiasm tends to wane over time — as does the willingness of patients to risk being a burden on others by asking for more and more help. Is the neighbor who volunteers to drive your kids to school while you’re away really willing to do it for four months over the course of two years? Are you really willing to ask that of your neighbor?”

For patients who live far from family and friends, the lack of social support may actually make travel a practical impossibility, but Griffith says that most of the patients she has known do get the support they need. The key for them is to think realistically — before treatment begins — about how long they’ll be on the road, how long they’ll be debilitated by treatment, what help they’ll need and when they’ll need it. Patients (or a designated point person) then need to line up at least some of that help in advance, not only to get commitments from people while they’re eager to help, but also to let people control the extent of their commitment.

Thinking all of this through can be difficult, but patients can consult with their medical teams, including their hospitals’ social workers, for assistance in identifying potential barriers to care and strategies for overcoming them. There are also several tools online that help patients imagine the help they might need and secure and schedule everyone from traveling companions to cat sitters (options include CareCalendar.org, LotsaHelpingHands.com and MyLifeLine.org). General calendar tools can also help.

GETTING OUT THE WALLET

Harder still can be paying for treatment on the road. If a distant facility is out of a patient’s insurance network, the added costs may start with the treatment itself.

Walmart and Lowe’s have arrangements offering their employees no-cost knee and hip replacement surgeries at four U.S. hospital systems, plus travel, lodging and living expenses for the patient and a caregiver. In addition, Walmart covers certain other surgeries at the Mayo Clinic and five other hospitals, and Lowe’s covers heart surgeries at the Cleveland Clinic for its employees. But these companies may be the exceptions to the rule.

A 2014 study by the ACS's Cancer Action Network (ACS CAN) found that, of 721 insurance plans available at the most popular silver level in the federally facilitated health care marketplace, 43 percent offered no out-of-network coverage.

“Often, when an individual has a form of cancer that requires specialized services, or lives in a rural area where an NCI-designated cancer center is not readily available in-network, the patient will file an exception with her health carrier in order to obtain some coverage for her treatments,” says Anna Howard, principal for policy development, access to and quality of care for ACS CAN. “Unfortunately, not all exceptions are granted, which means the patient can file an appeal (in which she may or may not prevail) or can attempt to strike a spot arrangement with the out-of-network institution (in which case the patient could be liable for thousands of dollars of cost-sharing). Even if the patient is successful in getting her plan to provide some coverage, she may be subject to balance billing by the treating facility, meaning that she will be asked to pay the difference between the provider’s charge and the amount the insurance company is willing to pay.”

“Many people are surprised to learn about the limitations of their insurance coverage,” Howard continues. “That’s why ACS CAN urges individuals shopping for coverage to learn more about what is covered. Our consumer resources are available at acscan.org/healthcare/learn.”

Moreover, medical costs are just part of the price tag for those who travel for cancer treatment. On top of regular household expenses, there are hotel, restaurant and airline expenditures to contend with — often when the patient, and possibly a loved one in the household who is acting as caregiver, have lost much of their normal income by taking a break from work.

Such obstacles might seem insurmountable, but there are places to look for financial help. Cancer center experts can negotiate with insurers and find whatever supplementary public or private treatment coverage a patient may qualify to receive. MD Anderson offers discounted airfare for patients and their families visiting the center from afar. Web tools such as gofundme.com can help patients (or their friends and families) raise money to cover treatment or supplementary expenses. Some hotels, airlines and other travel-related businesses offer discounts to people who travel for medical treatment. And at least one charity — Angel Airlines for Cancer Patients (angelairlinesforcancerpatients.org) — exists to do nothing else but provide free or reduced-cost flights for needy cancer patients. Some health insurance policies may pay some of the expenses of necessary medical travel, and some out-of-pocket expenses may be tax-deductible.

Perhaps the biggest single program to help traveling cancer patients comes from a partnership between ACS and Extended Stay America (extendedstayamerica.com/acs-partnership.html). The ACS began building its own network of lodging for cancer patients back in 1970, but was never able to meet all the patients’ requests for lodging, either with its 32 Hope Lodges or by teaming up with the individual franchisees that own most outlets of “chain” hotels. That all changed a couple of years back when Extended Stay America approached the ACS and offered to provide cancer patients with free or discounted rooms at any of its 629 hotels.

“The partnership has been a game changer,” says Kristen Solt, managing director of the Hope Lodge network. “We now have, from Extended Stay America each year, an extra 10,000 complimentary hotel rooms and another 10,000 rooms that are provided to ACS patients at a greatly discounted rate of $19 a night, providing more coverage in just about any city that’s large enough to sustain a significant cancer treatment center.”

A BRAIN TEASER

Even after patients line up the support and finances they’ll need for treatment on the road, they still face the challenges of planning and taking a trip while dealing with the side effects of cancer and its treatments, such as nausea or “chemobrain.”

Cancer can also create logistical hurdles for would-be travelers. Airlines sometimes refuse to transport people who appear to be dangerously ill unless they have notes from their doctors saying they’re healthy enough to fly. So, patients may want to see a doctor to determine if they’re fit for air travel, ask about any precautions they should take and perhaps get a note that explains their condition and asserts their ability to fly safely.

Some cancer centers that attract a significant percentage of their patients from far away help by handling logistical problems for patients. CTCA helps arrange flights and hotels for patients, meets them at the airport, handles their bags and transports them to their hotels and the hospital.

“This allows them to focus on their healing,” says Kim Piercy, director of guest services at CTCA’s Chicago-area hospital. “Nearly 100 percent of our patients from out of town take advantage of the program.”

Dwayne Bratcher is one patient who took advantage of that very program when he decided to travel for his cancer care. Bratcher, who manages a Publix supermarket in Florida, was diagnosed with breast cancer after a surgeon removed a lymph node from a painful knot of tissue under his armpit. He decided against his local oncologist after waiting a week for an initial appointment and then being told that it would take another couple of weeks to devise a plan for treating his advanced disease.

“I had no intention of trusting my life to someone who had no sense of urgency about my treatment, so I decided to look elsewhere,” Bratcher says. “Traveling from Orlando to Chicago 15 times was certainly harder than driving a few miles down the street, but I have no doubt in my mind that it was worth it. When your life is on the line, you go to the best.”