On a Quest for a Cure International Patients Seek Top U.S. Hospitals for Cancer Care by Gina Shaw When Khalid Wasma was first diagnosed with cancer, shortly after his 21st birthday his physicians at home in the Middle East offered a troubling prognosis. They could treat the synovial sarcoma in his left hip with chemotherapy followed by surgery—but they weren’t holding out a lot of hope that they could save the bone in his leg. In the long term, they feared, amputation might be necessary. The Wasma family began asking around. Was there any other alternative? Were there any more advanced treatments? Soon they began to hear one name over and over again: the M.D. Anderson Cancer Center, part of the University of Texas in Houston. "We heard things about M.D. Anderson that sounded almost like science fiction," Wasma said now, with the help of an interpreter. With Wasma too ill to handle long phone calls, his uncle called M.D. Anderson’s International Patient Center to ask whether they could help his nephew. Charts, films, and patient records flew back and forth across the Atlantic, and finally a team of experts at the hospital’s Sarcoma Center said, yes, the sarcoma could be treated with a more aggressive course of chemotherapy, followed by radiation and then surgery. They believed they could save Wasma’s leg—but with higher doses of chemotherapy come greater risks, risks that the specialists at M.D. Anderson were used to managing. In December 1999, four months after his diagnosis, Wasma came to Houston. He could no longer walk. M.D. Anderson was his last and best hope. Khalid Wasma is just one of thousands of patients traveling to the United States from overseas seeking specialty medical treatment not available in their home countries. In 1997, about 66,000 foreign patients were admitted to U.S. hospitals, while another 385,000 came for outpatient treatments and physician consultations. That is up more than 50 percent from the early 1990s. As the numbers of foreign patients continue to increase, leading hospitals—particularly academic centers with global reputations in particular specialties—have established international patient centers, a form of one-stop shopping for their foreign clients. Services at these centers vary, but most offer on-site interpretation and translation services in dozens of languages, transportation and housing assistance, medical report coordination, and assistance with deciphering the complex series of documents that make up a patient’s financial statement at any U.S. hospital. Cancer care draws many foreign patients to the United States, and like Wasma, many of them seek out M.D. Anderson. In July, U.S. News and World Report named M.D. Anderson the nation’s top cancer center in its survey of U.S. hospitals. "We only do cancer," said Wendeline Jongenburger, director of International Programs at M.D. Anderson, where the International Patient Center sees 3,500 patients a year. "They want a cure, and they know that MD Anderson is their best hope for survival." More than 500 clinical trials are currently taking place at M.D. Anderson—cutting-edge research involving treatments and drug therapies that may only be available at a few other places in the world. With such a large international clientele, M.D. Anderson takes pains to serve them well. Multilingual representatives who among them speak 14 languages staff the International Patient Center. Many are native to the region they’re responsible for. "Not only do they speak the language, but they’re sensitive to cultural differences," noted Jongenberger. The Consulate Connection Sira Pardo and Serhat Karakaya work closely with M.D. Anderson and its patients every day. From their desks at the Spanish and Turkish consulates in Houston, they often act as a bridge between the international patient representatives at the hospital and anxious cancer patients and their families in Madrid or Valencia, Istanbul or Izmir. "If you had a daughter and your daughter had cancer, and somebody told you that the best place in the world was in Russia, you’d take her to Russia," said Pardo. "The people who come here from Spain, they think that M.D. Anderson is technically the number-one oncology center in the world." "We’re the first door for them to knock on if they’re faced with any problems," said Karakaya, who has worked with Turkish cancer patients and others seeking care in the United States for the past 10 years. In addition to processing paperwork and certifying documentation—the usual function of a consulate—Pardo and Karakaya try to make Houston feel a little more like home for people stuck in a strange city for months and sometimes years at a time. "We have Turkish volunteers—they contact the Turkish patients and try to help them adjust," said Karakaya. "They take them shopping, invite them to their houses for dinner or lunch. As a consulate, we also get together with the patients every month for tea or something else informal. We just chitchat and leave the treatment on one side and just talk about other stuff. The cancer is not even mentioned, so they feel that there’s nothing happening, and they’re all fine together." Pardo does the same, frequently inviting Spanish M.D. Anderson patients to her home for barbecues. The birth of the international patient center concept has improved care for the people they serve, Pardo and Karakaya agree. Ten years ago, there were generally no international departments in hospitals," said Pardo. "Now almost all the big hospitals have them. It offers a great opportunity for hospitals to deal with their foreign patients directly, so the patients feel much more comfortable." Right behind M.D. Anderson in the U.S. News oncology rankings is Memorial Sloan-Kettering Cancer Center in New York, which held the number-one spot in 1999. "We’re not only cutting-edge, we’re pre-cutting-edge," said Avi Fishman, the director of Sloan-Kettering’s International Patient Center, which sees about 1,200 cancer patients from all over the world every year. "The studies that go on here and the sample sizes are usually larger at our institution than at others, and in turn, the care that we’re able to provide is a couple of steps above others because of the research that we do." But before the center opened in July 1997, international patients had to navigate a confusing maze of phone numbers and buildings to get access to that advanced care. "Prior to the center’s opening, people would call and get lost. They didn’t know who to call, where to go, and they had to go from building to building," noted Fishman. "It was truly a disservice to them, coming all this way, being in a foreign country with foreign customs, and not having anyone to help them negotiate the system." Now, international patients at Sloan-Kettering have one number to call and a staff dedicated to their services, helping them handle orientation to the facility, registration, and appointments. "It’s door-to-door service," said Fishman. Four teams of coordinators handle Sloan-Kettering’s international patient clientele. Team one handles Greece and Turkey (which make up the lion’s share of foreign referrals to the hospital), Eastern Europe, Cyprus, and the United Kingdom. Team two oversees South and Central America, the Caribbean, and Portugal. Team three manages the Middle East, Asia, Africa, Australia, and the rest of North America. And team four takes care of the remainder of Western Europe and the Indian subcontinent. The Cost of Care Of course, getting the best cancer care in the world doesn’t come cheap—and neither do the kind of services offered by international patient centers like those at M.D. Anderson and Sloan-Kettering. "It’s very, very good, but it’s very, very expensive," said Pardo. "You pay for breathing. It’s terribly expensive. But when you have somebody in that situation, you do everything you can." To make this kind of care affordable to less affluent foreign patients, many research and teaching institutions with large international clienteles have begun to establish package deals and other relationships with insurers overseas. M.D. Anderson works directly with several large international insurance providers. "We’re one of their preferred providers, and we bill the insurance company directly," noted Jongenburger. But insurance doesn’t cover everything. "There’s usually a high deductible, and often there are a lot of things that aren’t covered." Sloan-Kettering recently cared for a Greek businessman with stage-four melanoma—a grave condition, which required that he be immediately admitted to the hospital. But after going over the cost of care with his patient representative, the man feared his insurance would not pay. He wanted to go home and think about it. "I said, ‘No way are you going home,’" said Fishman, who feared that a delay in treatment could put the man’s life at risk. The International Center sprang into action, contacting the Greek Consulate in New York, which sent a letter of assurance the following day and contacted the man’s insurance companies to get the necessary approvals. But insurance coverage for this kind of advanced specialty care can be difficult to obtain on an international basis, said John Hutchins, director of International Patient Services at the Johns Hopkins University in Baltimore. "It’s not a particularly easy insurance system because you have to have some large number of people putting money into the pool," he said. He admits the issue of cost can be one of the most painful parts of his job. "It’s probably the worst part of international medicine—cancer and transplants—because they can last for a long time," said Hutchins. "These are complex cases that usually require a lot of time and a lot of money. But the people that work here have been selected because they really have a heart. Our goal is to keep the financial part where it doesn’t dominate the system." Hopkins’ worldwide reputation—the hospital has ranked number one overall in the U.S. News survey for the past 10 years and rated number three among cancer centers nationwide in the 2000 survey—draws more than 7,000 patients a year from more than 90 countries, primarily the Middle East and Latin America. The International Patient Services staff speaks a total of 26 languages. "We’ve got people here with a lot of experience in this field, some with 10 years’ experience or more," he pointed out. "They’re able to handle just about any situation." Hutchins estimates that prostate cancer accounts for the largest percentage of Hopkins’ international cancer patients because of the fame of Hopkins surgeon Patrick Walsh, director of the Brady Urological Institute and pioneer of nerve-sparing radical prostatectomy surgery. One-Stop Shopping With three of the nation’s leading research and teaching hospitals—Fox Chase Cancer Center, the University of Pennsylvania, and Thomas Jefferson University—the Philadelphia area is a popular destination for foreign cancer patients seeking the latest research and treatments. At Thomas Jefferson, for example, researchers are now conducting clinical trials of a custom-made vaccine created from a patient’s own cancer tumor cells, which may help prolong the lives of patients with malignant melanoma. In 1998, Fox Chase, Penn, and TJU joined seven other specialty hospitals throughout the Philadelphia region to create Philadelphia International Medicine (PIM). Now, one telephone call connects patients and family members with any of the hospitals in the PIM network. PIM’s unique International Services Center manages the service needs of international patients at all 10 institutions—from the very first phone call through the patient’s final visit. Network staff coordinate physician consultations and patient support services at each hospital, as well as helping with travel, hotels and long-term stay options, and renting medical equipment. "PIM makes it easier for patients and physicians to get together," said Robert Ozols, senior v ice president for Medical Science at Fox Chase Cancer Center. Fox Chase, the nation’s oldest designated cancer center, draws many international patients as a result of renowned programs such as its National Cancer Institute-funded Specialized Program of Research Excellence in ovarian cancer—one of only four such programs in the nation. "If you open up any of the big textbooks on ovarian cancer, you’ll find Fox Chase," said Ozols. The international patient representatives found in a centralized service such as PIM can also help physicians like Ozols deal with the widely varying cultural backgrounds of patients who come from as far away as Paris or Pyongyang, Kuwait City or Kyoto. For example, a U.S. physician may sit down to discuss a case with a Japanese patient, only to find that she asks no questions. But that doesn’t mean she doesn’t have any. "Generally speaking, a Japanese doctor’s attitude toward the patient is paternal. Japanese patients usually don’t ask the doctors questions," said Yasuhiko Tatsumi, consul and medical attaché at the Japanese Embassy. Of course, it’s difficult to ask questions in a system that requires primary care doctors to see 50 or 60 patients a day, as Tatsumi said he frequently did in Japan. "Even though they may want to ask many questions, they don’t," said Tatsumi. "U.S. doctors, frankly speaking, think Japanese patients are obedient and not demanding. But they should encourage them to discuss things like medical expenses more openly. At the beginning they have to say ‘We have plenty of time to talk with each other about everything.’ Japanese patients will be very happy to have a doctor with such an attitude." For Khalid Wasma, the attitudes of his doctors at M.D. Anderson also made a difference. "I was so apprehensive," he said. "But they were cheerful and positive right from the start." Both radiation oncologist Andrew Burgess and surgical oncologist Barry Feig—leading sarcoma specialists—inspired Wasma’s confidence. Wheeled into M.D. Anderson eight months ago unable to walk, he underwent surgery in June after an extensive course of chemotherapy and radiation. Now he walks without a limp. "You couldn’t even tell that he’d had surgery," said Abeer Saqer, the senior international patient representative who works with Wasma. On Aug. 11, Wasma was scheduled to meet with his oncology team to discuss whether or not further post-operative chemotherapy is needed. He may have to spend more time in Houston—but that’s just fine with him. "It’s difficult not being able to see family members every day, my mom, my brothers and sisters. But M.D. Anderson became like a big family for me," he said. "Being away from home is hard, but my health is worth it. When it comes to cancer, we’re talking about saving lives." Gina Shaw is a freelance writer in Washington, D.C.