Navigating A Challenging Journey:
International Referral Services Helps Ease The Transition
By Michelle Bearden
Carmen Goitia had nothing but good memories from her previous two vacations to America. But the third time the Puerto Rican woman scheduled a visit to the United States was not for pleasure. She came to Moffitt Cancer Center in Tampa for a chance to save her life.
For anyone undergoing treatment for a life-threatening disease, navigating the health-care system can be emotionally draining. It only intensifies if you’re from another country and your first language is not English.
Fortunately, she never had to endure that potentially difficult experience. With Moffitt’s International Referral Services, Goitia, 54, was taken under the wings of caring staff members from the moment she arrived.
“It happened when I first walked through the doors of the hospital and got a big warm welcome,” says the retired insurance adjuster. “And it’s been that way ever since. Any questions I have, any help I need, someone is there. It has made such a difference. It’s allowed me to concentrate on getting healthy, not focusing on handling all the bureaucracy.”
That kind of heartfelt endorsement is just what Martha Sanz likes to hear. As manager of the program that now serves some 100 international patients and U.S. citizens living abroad each month, Sanz says there is one overriding goal of the multitasking program.
“We want to ease their minds and bring down their anxiety,” she says. “They already have enough going on in dealing with cancer. Let us take on some of the burden to make this journey less stressful.”
When Goitia was diagnosed in July 2012 with acute myeloid leukemia (AML), a cancer of the myeloid line of blood cells, she had one main thought: “I want to live.”
Working with a medical oncologist with Moffitt Cancer Center’s Blood and Marrow Transplant Department, who came to Puerto Rico once a month to see patients, Goitia was prepared for an aggressive fight. She agreed to a rigorous treatment of blood transfusions and chemotherapy to halt the rapid growth of abnormal white blood cells that accumulate in the bone marrow and interfere with the production of normal blood cells.
At first, it worked. After the seventh and final chemo treatment, she went into remission for a year. But in December 2013, another checkup revealed that the cancer had returned. This time, her doctor told her she needed a stem-cell transplant, and she needed one immediately.
The good news was that her older sister, Clarissa, was a perfect match. According to Dr. Ochoa, there’s only a 25 percent probability of that happening in children from the same parents.
But there was bad news, too: Currently in Puerto Rico, those types of transplants are not performed. She would have to come to the United States for the procedure.
While she felt very fortunate to be in the care of Dr. Ochoa, traveling to the U.S. and going to a strange hospital was nerve-wracking. She spoke English, but it wasn’t her first language. What if she couldn’t communicate her concerns with medical staff? Where would she and her sister stay? How would she attend to problems that might arise back home during her hospital stay?
After insurance issues were sorted out, the Goitia sisters arrived at Moffitt a month later. Their assigned coordinator from the referral team met them at Moffitt that first morning and welcomed them with a hearty “Bienvenida!” After getting a tour of the hospital and introductions to the medical staff, the two women felt at ease.
“Even the little things, like how to use the fax machine or finding the closest coffee shop,” says Clarissa Goitia, 69. “Those are the things that can end up causing so much frustration.”
The International Patient Referral Services, which Sanz was hired to develop in 1999, provides three stages of assistance. For the pre-visit, staffers will gather all intake information, collect necessary medical records, help the family with reduced-cost lodging and transportation, and assist with visa management and any embassy travel requisites prior to arrival.
During the patient’s visit or long-term stay, the coordinator will collaborate with various Moffitt departments to ensure the appropriate patient care, from language services to case management. The coordinator provides community resource information from banking to dining options. If the patient needs access to business services, such as faxes and shipping, the coordinator will assist with that. If the stay has to be extended for medical reasons, the coordinator will work with Immigration Services. Even after the patient returns home, the staff’s work is not done. Team members help arrange post-treatment follow-up visits, assist with the logistics of returning home, forward medical reports to the attending physician, and give guidance with financial needs such as statements and estimates.
The service has added another component to its offerings: Online consulting for international patients to receive a second opinion from a Moffitt specialist without having to travel to the center. Through the hospital’s portal, and with the referring physician’s participation, patients are able to confirm a diagnosis, review current treatment plans and explore possible treatments outside their country, including clinical trials.
There’s a fee for this service, but it’s a cost-effective alternative for some patients, Sanz says. “They may be too sick to travel, or can’t afford to make the trip,” she notes. “It’s a way to tap into the vast resources we have here.”
The majority of the patients using the referral services come from the Caribbean, followed by South America, Canada, Europe and the Middle East. Moffitt is prepared for people of all nationalities, though, with an interpreter service that has access to more than 100 languages.
“Communication is always a big issue,” Sanz says. “That’s the first step in breaking down barriers. Developing personal relationships is important, too.”
The Goitia sisters had hoped to return home after they recovered from the March 18, 2014, transplant and Carmen got a healthy report from Dr. Ochoa.
Unfortunately, she suffered a setback three months later when she developed graft-versus-host disease (GVHD), a complication from receiving a bone marrow or stem cell transplant from a donor. When GVHD occurs, the new, transplanted cells regard the recipient's body as foreign and attack the recipient's body. According to Dr. Ochoa, GVHD happens in approximately 30 to 40 percent of sibling transplant recipients. This complication can result in weight loss, vomiting, diarrhea, skin rashes and abnormalities on the liver chemistries. Goitia battled the condition for nearly six months, losing more than 60 pounds.
Again, the added burden of the sisters’ unexpected extended stay was eased by the help of their coordinator. Because Goitia required daily rounds of infusions, they continued to live at their home away home -- TownePlace Suites by Marriott, which provides rooms to Moffitt patients at a special rate.
Since overcoming that bout, her medical prognosis is good. The sisters are still coming to the medical center weekly, making the two-hour round trip from Ocoee, Fla., where they are living temporarily with Carmen’s daughter, who relocated from Puerto Rico.
“This whole experience has taught me to live every day fully,” Goitia says. “My sister and my doctor saved my life. Coming here to Moffitt saved my life. And I have so much more living to do.”
Statistics are in Goitia’s favor. Dr. Ochoa says once AML patients achieve remission for two years, relapse is “much less common.” And she is playing a big role in her recovery. “She is to be commended for her very hard work,” he says. He credits her positive attitude, resilience, understanding of the disease, availability of family support and her adherence to therapy plans for having a positive impact on her health.
The physician also credits Moffitt’s commitment to assisting international patients like Goitia. By eliminating the language barrier and giving them access to the best possible treatment, they are given a chance to claim victory over their cancer. “The practice of medicine is more than a day job. It calls for a service to the society in general, but in particular to vulnerable populations,” Dr. Ochoa says. “Providing services for these patients has been very rewarding and fulfilling for me.