By: Laura Belpedio
By: Jennifer Cassed...
By: Molly Jenkins
By: kendall louis
Cook Children’s parlays its lineup of unusual specialties into a growing international program, drawing patients from Latin America, Canada, and the Middle East, and marking Fort Worth’s small entry into the $100 billion global medical tourism industry.
Noelle Pawis was on a “quest” for two and a half years to figure out what was wrong with her son Tavin, who collapsed one day at age 4 in his Canadian kindergarten classroom. Tavin’s body was producing too much insulin, driving his blood sugar life-threateningly low, and he spent 52 days at a children’s hospital ixn Toronto without diagnosis.
“All the tests came back negative,” says Pawis, a nursing assistant. “They couldn’t explain or diagnose him.” Tavin’s Canadian team wanted to remove the pancreas, but that would have instantly turned the boy into a diabetic, and “they didn’t know for sure that was the answer.” Tavin needed a PET scan that wasn’t available in Canada.
So Pawis turned to research and quickly found the scan could be done at only two hospitals in the United States: Children’s Hospital of Philadelphia – the renowned “CHOP” hospital – and the Cook Children’s Hyperinsulinism Center in Fort Worth. The hospitals, the only two in the country with centers for diagnosis and treatment of Hyperinsulinism, a rare condition that causes chronic low sugar in newborns and children, had something else in common: the endocrinologist Paul Thornton, who had been on staff at CHOP, and then moved to Cook Children’s to build its center.
“I sent Dr. Thornton over 300 pages of test results,” Pawis says. “He went over them, called me on his own, and right away picked out four tests that they should have done.” It then took two and a half years to convince her health plan, the Ontario Health Insurance Plan, to agree to cover the eventual $250,000 cost of Tavin’s four-week stay in Fort Worth last summer.
Medical Tourism’s Fort Worth Birth
Pawis and her son are among an increasing number of foreign citizens who are trekking to Fort Worth to take advantage of an unusual array of specialties at Cook Children’s, in hematology and oncology, neurosciences and epilepsy, endocrinology and diabetes, and heart. In 2014, the hospital recruited a Microsoft sales executive, Cynthia Gonzalez, who in 2015 launched a program to market those specialties internationally.
The program is growing slowly, which is fine by Cook Children’s. “We haven’t hit 100 patients yet” in a year, Gonzalez said in an interview. The hospital wants to grow the program to 400-500 patients annually, significantly lower than international programs at the largest children’s hospitals nationally. “We want to make sure our program is quality, is caring, and aligns with our culture,” Gonzalez said. For one, Cook Children’s is not a teaching hospital for physicians – a distinction it wants to retain, she said.
Despite its slow growth, the program is yielding economic spinoffs in Fort Worth, where patients logged an estimated 1,000 room nights in lodging in 2016, mostly from Latin America and the Middle East, the Fort Worth Convention & Visitors Bureau estimated, briefly highlighting the numbers in its recent annual meeting. No data was recorded for 2015, and the CVB hasn’t been able to analyze yet how much economic impact the Cook Children’s business is generating. “We think it’s significant enough to call out,” Mitch Whitten, the bureau’s vice president of marketing, said in an interview. Some referrals have come from the celebrated University of Texas MD Anderson Cancer Center in Houston. The bureau, at the request of Cook Children’s, has put together welcome kits for visiting patients and their families, containing information on restaurants, places of worship, and things to do in the area.
“They have been extremely savvy and committed to developing the market,” Estela Martinez-Stuart, the CVB’s director of tourism, said in an interview. “Our role has been to be supportive of their efforts.”
$100 Billion Market
The Cook Children’s experience is the first the CVB knows of significant medical tourism activity in the city, Martinez-Stuart and Whitten said. Medical tourism, the practice of traveling abroad for diagnosis and treatment, is currently estimated at $100 billion worldwide and projected to grow 25 percent year-over-year by 2025, according to the Medical Tourism Association, the global industry nonprofit that seeks to provide transparency in quality of care and pricing.
Eleven million people worldwide are estimated to travel internationally for treatment each year, driven by factors such as availability of care, the combination of care with attractive destinations and reduced costs, and better quality of care than patients can receive at home. Orthopedic surgery, cosmetic surgery, cardiac surgery, oncologic care and dentistry are top categories of treatment for medical tourism globally. The United States leads in market share of health care travel spending, but Thailand, Singapore, and South Korea continue to enjoy significant growth, the industry association says.
At Cook Children’s, the international program has so far drawn patients from Kuwait, Dubai, Mexico, Canada, Guatemala, Nicaragua, Puerto Rico, the Ukraine, Colombia and Saudi Arabia, Gonzalez said.
Her team has a Middle East director, one for Latin America, three Arabic-speaking case coordinators, and openings for two Spanish-speaking care coordinators. The care coordinators must be facile in reading medical records – either physicians or nurses, Gonzalez said.
The directors, Gonzalez, and Cook specialists regularly travel to promote the program, and they’ve returned to the same ground to reinforce relationships, said Gonzalez, who was living in Fort Worth, working for Microsoft and thinking of a career change, when she met the Cook Children’s CEO at a party and learned of the job opening.
“It’s all a relationship-building program,” Gonzalez says of the face-to-face efforts to build the international program. “They think because we’re so far away, we’re never coming back. I’ve been to the Middle East five times and been all over Latin America and Puerto Rico. It’s nice to have a D/FW Airport that goes everywhere and has a nonstop flight.”
Relationship-building is different by region, she says. In the Middle East, she works through consulates and embassies. In Latin America, she works through hospitals and insurers. “Different countries handle their health care in different ways,” she says.
Why Cook Children’s?
The availability of non-invasive surgical technology and capabilities is a big drawing card for Cook’s program, Gonzalez said. “They’re doing very invasive surgeries” in many countries Cook draws patients from. Kuwait, for example, has a very high post-surgery mortality rate for the cardiovascular surgeries it performs, Gonzalez said. “They’re going to keep coming back,” she said. The hospital in February hosted a group of 15 Mexican physicians, she said.
Gonzalez also knows from personal experience: she came down with the flu while travelling to Dubai. “I could not get a dose of Tamiflu to save my life,” she said. “Their process is you go to the hospital, and you stay in the hospital until you get well.” She left the country. “When I got home, I got my Tamiflu.”
Cook Children’s has built the international program chiefly from specialties it already had in place. It’s made one addition to the program since inception, with Cook’s recent purchase of a urology clinic known globally, Gonzalez said.
Cook Children’s decided to put together a formal program because the hospital had been receiving international patients since the late 1980s, Gonzalez said. She aimed the program first at Latin America as she began to build it. “Then we started getting referrals from the Middle East, mainly for neuroblastoma,” she says.
The hospital’s neuroblastoma tumor program offers clinical trials for patients who haven’t had success with standard chemotherapy or have had relapse. Cook Children’s also is in a clinical trial with an experimental isotope that delivers radiation directly to neuroblastoma tumors and metastases, and touts itself as the only hospital in the southwest U.S. that offers such therapy. Parents can stay in an adjoining suite and interact with their child through a window and, wearing protective clothing, they can visit with their children each day for a limited period.
With its Jane and John Justin Neurosciences Center, Cook Children’s also bills itself as the first independent pediatric hospital in the United States and the only children’s hospital in Texas that offers a comprehensive movement disorder program with deep brain stimulation. Deep brain stimulation is a surgery that includes the placement of electrodes into the brain that are connected to an implanted device. The electrodes deliver low-voltage impulses to the targeted parts of the brain. Since its first deep brain stimulation in 2007, Cook has performed the surgery on nearly 100 patients – all with Parkinson’s disease, tremors, and dystonia, in which muscles contract, causing repetitive or twisting movement. The hospital has conducted deep brain stimulation surgery on children from Kuwait, Gonzalez said. “They come in a wheelchair and leave here able to walk,” she said.
Additionally from the Neurosciences Center, Cook offers minimally invasive laser brain surgery to treat children with intractable epilepsy and small brain tumors. In 2014, it became the first free-standing U.S. children’s hospital to acquire robotic technology for use in minimally invasive neurosurgery. “The technology in our life sciences department is bar none,” Gonzalez said.
A key piece of the international program is the “concierge” service Cook offers, which handles everything from travel arrangements to Fort Worth, to patients’ stays while they’re here, and their departure. Typical visits last 30 to 90 days, and sometimes as long as six months, Gonzalez said. “It could be 20 degrees today [when patients arrive] and 95 when they leave.”
In Tavin’s case, his “first contact” with Cook helped with the application, paperwork, and travel arrangements, Pawis said. “They kept in touch throughout the process; the doctor kept in touch to offer his advice.”
A driver and car hired by Cook met the two at Dallas/Fort Worth Airport and drove them to their hotel in Fort Worth. Cook also contacts D/FW’s Ambassador program, which assists foreign travelers through customs. Cook’s care coordinators and other staff members help patients and families get to their appointments and tests, move to longer-stay arrangements such as the Ronald McDonald House or an apartment, rent cars, find places of worship, go grocery shopping, and deal with banks. “When they come here, we want to make them feel at home,” Gonzalez said. “You don’t want to land at Dallas/Fort Worth and have to try to find your way around.”
The hospital’s 50 “child life” specialists, each with childhood development degrees, put a premium on explaining what’s happening to the children and their families, Gonzalez said. That includes identifying each member of the medical team and defining their roles, she said. “Everything’s foreign” to the children and their families, Gonzalez said. “Families will call my team, all hours, day and night.” After the patient’s stay in Fort Worth is over, Cook stays in touch by telemedicine with the patient’s medical team at home, Gonzalez said.
Pawis and her son stayed one night at a hotel and then were able to move into the Ronald McDonald House near Cook Children’s for the remainder of their stay. One thing Pawis noticed immediately in her interaction with the Cook staff: “It was very much comforting on the floor to see nurses who were familiar with his condition,” she says.
Canada had been nothing but frustration. Tavin had displayed no symptoms until the day he collapsed at school, she says. “They called me and said he was having a seizure.” At the hospital, “the doctor wasn’t very supportive of me. They decided that we may never know what was wrong with him, so they didn’t want to do any more testing.” Once Tavin was discharged, “I was basically left to struggle, having to feed him constantly, check his sugar 10 times a day.” He wore a monitor, and Pawis dropped by Tavin’s school several times a day to check his sugar.
At Cook, the diagnosis of congenital diffuse Hyperinsulinism came quickly. “They knew for sure it was Hyperinsulinism,” Pawis says. The medical team ran a fasting study on Tavin and an exercise test to see how long he could exercise without his sugar going low. The hospital also ran a test to see how long Tavin could go without eating before his sugar went low. The PET scan showed three abnormal spots on the pancreas. “If it had been one [Focal Hyperinsulinism], they could have cut it out and potentially cured him,” Pawis said.
Because it was diffuse, the choices were medical therapy or removing virtually all of the pancreas, which likely would have turned Tavin into a diabetic. The medical team, which had scheduled a surgery, recommended against it. “It would have been trading one illness for another,” Pawis said. “He wasn’t able to have the surgery, but we were able to diagnose him.”
Tavin, on his first visit to Texas, had moments away from his tests and treatment. The PET scan machine malfunctioned, delaying Tavin’s scan for two weeks after his arrival. “We went to the zoo,” Pawis says. “I think I was almost more excited than my son to see penguins. That’s something you can’t see in Canada.” Tavin ran up and down the slide twice at the zoo’s new Safari Splash waterpark, but his sugar went low. The two also enjoyed a performance of the Fort Worth Symphony’s Concerts in the Garden at the Fort Worth Botanic Garden and made new friends through the Ronald McDonald House. “One lady picked us up from the Ronald McDonald House, and we made a play date with pizza,” Pawis says.
What’s Next for Tavin
Tavin, now 7, tried a new medication while in Texas that, if effective in keeping Tavin’s sugars up, would have been given by injection only once a month on an ongoing basis. It wasn’t effective, and Tavin has gone back to his old medication, but with a different dosage, that Pawis orders from the United States. It also isn’t fully effective. Tavin must eat frequently to keep up his sugar, and Pawis maintains her visits several times a day to check on him in school. Tavin also recently received shots that make his liver instantly produce sugar. Recently, Tavin was admitted to a local hospital for four days with a flu and infection.
Scientists are working on a new medication, Pawis said. Stem cell therapy in the future is a possibility. “It’s possible the pancreas may heal, but there’s a good chance it will get worse,” she said. “Or if I can’t manage it, they could remove all his pancreas, which would stop his sugar from going low, but he would wake up an instant diabetic. I would have to give him insulin. So then his sugar would go low and everything else that goes with diabetes.”
All in all, she says, “I’ve been doing pretty well at managing.”
Tavin’s experience helps illustrate the limits Cook Children’s wants to place on growth of its international program, Gonzalez says. “Growing it to huge numbers? No,” she says. “But growing it to the point where our physicians and specialists see these kids? Yes.”
Cook Children’s Goes International
Cook Children’s launched an international program in 2015, marketing a number of unusual specialties.
Stem Cell Transplant program. Since 1986, Cook has performed more than 900 bone marrow and stem cell transplants. Median patient stays for four procedures: 17-57 days.
Neuroblastoma program. Most common solid tumor outside the head in children. Cook participates in clinical trials and offers an unusual targeted radiation therapy.
Jane and John Justin Neurosciences Center
• Autism support program, in partnership with Fort Worth’s Child Study Center.
• Craniofacial and cleft surgery
Endocrinology and Diabetes
By: Laura Belpedio
By: Jennifer Cassed...
By: Molly Jenkins
By: kendall louis