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by Mary Powers
St. Jude partner sites extend cures to children worldwide.
As he does early on most Wednesday mornings, Raul Ribeiro, MD, director of the St. Jude International Outreach Program (IOP), settles in to trade ideas and advice with colleagues about the care and treatment of young leukemia patients.
For 90 minutes, he discusses the blood cancer that has derailed the lives of a half-dozen individuals. He and the other clinicians evaluate bone scans, view images of white blood cells, and discuss treatment of a patient battling both cancer and tuberculosis. Ribeiro listens to patient histories, reports of lab results and measures of treatment response. He fields questions about whether one patient needs an immediate bone marrow transplant, whether an 11-year-old needs another bone marrow biopsy and what to try next for a patient who has had a disappointing initial treatment response.
Such discussions play out countless times every day as health professionals work to bring the art and the science of medicine to the patient’s bedside. This conversation involves participants scattered across the globe. Some, like Ribeiro, speak from offices on the St. Jude campus. Others are an ocean and six time zones away in Morocco.
The North African nation is home to three of the hospital’s international partners, which expand the St. Jude mission of finding cures and saving children. What began in 1993 with a request to help replicate the St. Jude model in El Salvador has become an international effort involving partnerships with 19 hospitals in 14 countries.
This year those sites will serve about 2,000 new patients and provide care for thousands more. But the program affects many more and has become a model for other organizations working to advance pediatric cancer treatment worldwide.
“St. Jude has helped demonstrate that cancer is curable, even in developing countries. That evidence is changing government policies worldwide,” Ribeiro says. Battling childhood cancer is finally starting to appear on the agenda even in developing countries.
The connection also benefits St. Jude. Physicians adapt treatments developed at St. Jude for use in situations where the need dramatically exceeds local resources. Investigators have used tissue donated from partner sites for research advancing the understanding of leukemia and the eye tumor retinoblastoma. The links have also helped Ribeiro and other St. Jude investigators understand and treat adrenocortical carcinoma, a rare tumor of the adrenal gland.
This year cancer will be diagnosed in about 160,000 children around the globe. For the estimated 20 percent in the U.S., Europe or other parts of the developed world, the odds of a cure approach 80 percent. But for the remaining 80 percent, the outlook can be bleak. Some countries still lack a children’s cancer specialist. Cures are often restricted to those with the resources to travel abroad for treatment. In many nations, cancer patients are stigmatized and providing patients with adequate pain control remains a dream.
The International Outreach Program has tackled this disparity by pioneering a cooperative approach called twinning. This process pairs St. Jude experts with local health providers and community leaders in other countries. Although some families travel to St. Jude, many now receive treatment closer to home. Twinning is more efficient, less disruptive and allows the benefits of care to reach thousands. All patients treated at the partner hospitals also benefit from the IOP’s emphasis on infection control, enhanced nursing education and greater local medical expertise.
Each partner site must have a medical institution that can ensure all children have access to treatment, a physician dedicated to the effort and the fundraising support of a local nonprofit dedicated to childhood cancer. In return, physicians, staff and patients at the partner locations gain access to St. Jude experience and assistance. In addition to serving as mentors, St. Jude employees offer the expertise and connections needed for local physicians to improve cure rates and conduct research to find solutions to their unique challenges.
Weekly webinars, based on geography and cancer diagnosis, allow clinicians to discuss the care of particular patients. St. Jude has helped with diagnostic testing, trained nurse educators and developed computer software to support research into local or regional needs. Partners also obtain advice about building grassroots financial support.
The efforts are paying off.
“We have seen tremendous progress in terms of access to care in a relatively short period of time,” Ribeiro says.
Cure rates are also rising. In El Salvador, the five-year survival rate for children with acute lymphoblastic leukemia (ALL) rose from 10 to 60 percent during the first five years of the partnership between St. Jude and Hospital Benjamin Bloom in San Salvador. In Guatemala City, a partner since 1997, childhood cancer cure rates climbed from 25 to 60 percent. The rates rose from 29 to 70 percent at the St. Jude partner hospital in Recife, Brazil.
Physicians at the Central American partner sites collaborated on a strategy that dramatically reduced treatment abandonment by bone tumor patients. An internationally accepted system for matching the intensity of leukemia treatment with the capabilities of the local health care system grew out of efforts to adapt St. Jude leukemia therapies for use in El Salvador.
During St. Jude visits to partner sites, staff noticed numerous deaths from infection among children whose immune systems had been weakened by chemotherapy. In response, Miguela Caniza, MD, who heads the IOP’s infection control program, launched an educational program that trained about 150 infectious diseases specialists in Latin America. Other efforts have focused on reducing hospital-acquired infections through mentoring of physicians and nurses, improved access to hand sanitizer and better techniques for administering injections. A demonstration project helped one partner hospital save about $3,000 monthly simply by doing a better job separating biohazards from other waste. The effort cut the hospital’s costs and improved safety. The savings are being reinvested into patient care.
The IOP’s mission prompted Kyle Johnson, PhD, to switch his professional focus from basic science to clinical care. Johnson earned a doctorate in molecular and cell biology and now works in the program’s infectious disease effort. He spearheaded the biohazards project.
“Doing even a little has a big impact on the health care being delivered. I’ve been helped a lot in my life, so this is a way for me to give back,” Johnson explains.
The approach of pairing institutions from developed and developing nations to support quality, locally sustainable health care has become an international model.
“It makes you realize that the impact of what we do is really felt by a lot of people around the world,” says Scott Howard, MD, director of IOP’s clinical trials.
After Sheri Spunt, MD, Oncology, traveled to Singapore, Lebanon and Jordan last year to participate in conferences and visit partner sites, she was struck by the international reach of St. Jude. Not only was much of the hospital’s research being discussed, but the partners brought health providers together to identify their own solutions.
“The biggest impact of the work we do may be in these other places, helping other physicians take what we have learned here and apply it to their situation at home,” she says.
The partnerships have also underscored the reputation of St. Jude as a hospital without walls. Sima Jeha, MD, Oncology, was attending an international leukemia conference in Asia when a colleague remarked, “St. Jude is known everywhere, from the highest mountain to the deepest ocean. There is always a family or a doctor or a patient who has been directly touched or treated or counseled by someone at St. Jude.”
Jeha, who graduated from the American University of Beirut, joined St. Jude in 2003. Today her duties include serving as director of the IOP’s Middle East Program.
“Many people would love to be involved in twinning programs, but they lack the institutional support we enjoy,” she says. “We cannot thank ALSAC and the donors enough for what they do.”
Howard likens the St. Jude efforts to shoring up a leaky dam.
“We are working on a small hole called childhood cancer, while other larger groups are working on bigger holes, like malnutrition or the lack of clean drinking water,” he says. “It would be nice if there were twice as many people working on childhood cancer.”
The breadth of the IOP makes it exceptional internationally. Ribeiro says the challenge has been handling the requests for help. “Once we documented our success in El Salvador, requests for help poured in from around the globe,” he says.
St. Jude officials responded by launching www.Cure4Kids.org in 2002, a free clearinghouse for scientific and clinical information on childhood cancer for health providers worldwide. The website hosts about 50 online conferences every month, including the weekly meetings that unite St. Jude faculty with physicians at partner sites in Morocco and around the world. About 26,000 health providers in 175 countries have registered with the site. The hospital has developed and shares other free tools, including a database to aid collaboration and research at partner sites.
But Jeha says it is not enough to simply make information available online. Health providers in many parts of the world do not have access to the latest medications, laboratory facilities or skilled support staff. Visiting partner sites not only helps St. Jude faculty understand the challenges colleagues there face, but often helps bring providers together to collaborate on solutions.
When Spunt visited the St. Jude collaborating site in Singapore, she learned the depth of the challenges physicians face.
“Their questions did not lend themselves to easy answers but required problem solving, since often the recommended treatment is not immediately available,” she says.
St. Jude officials are now looking for new ways to advance the hospital’s mission. Through its alliance with Rady Children’s Hospital in San Diego, St. Jude helped create a new five-bed childhood cancer treatment unit at Tijuana’s General Hospital in Mexico. Ribeiro says such multi-institutional efforts may help expand health care in some of the world’s poorest countries.
“We are starting to see more patients being diagnosed with cancer in urban African cities. These children have curable cancers, but no access to care or even proper pain control,” he says.
Meanwhile, work continues to nurture and expand expertise at current partner institutions. Steady improvement in each one will foster not only greater access to care, but improved access to the kind of treatment that has pushed long-term survival for St. Jude ALL patients to 94 percent. The vision is for a new, expanded network of national and regional centers of excellence staffed by local experts searching for answers to local problems.
“It is like lighting a candle from one flame. The partnership program allows us to spread that light all over the world,” Jeha says.
Promise Spring 2011