A team from UTHSC and St. Jude Children’s Research Hospital recently traveled to Guatemala to educate and equip physicians battling one of childhood’s most vicious sight-robbing diseases, retinoblastoma.
A team from the University of Tennessee Health Science Center and St. Jude Children’s Research Hospital recently traveled to Guatemala to educate and equip physicians in the small, Central American country battling one of childhood’s most vicious “sight-robbing” diseases –retinoblastoma.
This was the first of several trips planned in a collaborative effort to establish clinics in Central America, which has a high rate of the disease. The most common eye cancer in children, retinoblastoma is 100 percent fatal if not treated.
Memphis volunteer team members included Barrett Haik, MD, Hamilton Professor in Ophthalmology, UT ophthalmology department chair, and St. Jude Ophthalmology Division chief; Judy Wilimas, MD, medical director of the St. Jude Central American International Outreach Program; Matthew W. Wilson, MD, UT assistant professor in ophthalmology; Blanca Phillips, UT Eye Tumor Center Coordinator; and Raul C. Ribeiro, MD, Director of the St. Jude International Outreach Program. The project is coordinated through ORBIS International, Inc., a not-for-profit organization aimed at preserving and restoring sight.
According to Dr. Haik, this new program is unique because “it represents a seamless integration of several institutions working toward one common goal — the prevention of blindness and death in these unfortunate and afflicted children.”
He commented, “The cost of bringing a single infant afflicted with eye cancer and one family member to the United States for six to 18 months of complex therapy can easily cost $150,000 to $200,000. For the same investment, Central American physicians can be flown to Memphis and undergo intensive training at UT and St. Jude. Once we’re sure they’re comfortable with what they’re doing, we go to their country for site visits. At that point, Orbis International donates lasers, cryotherapy (freezing) units and a specialized camera for producing high-quality digital images of the cancers.
“By fully preparing these physicians with training and equipment, we are laying the foundation for working with them by using ‘real time internet viewing.’ Thanks to a specialized electronic medical record developed by ORBIS, they will be able to send images to UT and St Jude where we can continue to mentor the physicians, as well as share in the patients’ progress.” The St. Jude retinoblastoma clinic is one of the largest in the nation, and Dr. Haik currently sees10 to 15 children with the disease a week.
In regard to working with the Guatemalan doctors, Dr. Haik commented, “I was amazed by their skills and enthusiasm, although I was saddened by the lack of equipment at their disposal,” he said. “Thankfully, organizations like ORBIS are able to provide equipment so we can establish an entire program in these countries. This allows us to help hundreds of children for a minimal cost, while also improving that country’s level of medical care.”
According to Dr. Haik, researchers believe a high prevalence of retinoblastoma exists in Central and South America because of environmental and epidemiological factors. Genetic disposition can also play a key role in children being at risk for the disease.
If properly treated, 90 percent of the children can be cured of retinoblastoma through early detection and treatment of the affected eye. Historically, the disease was cured by removing the eye; today chemotherapy has proven to be an effective treatment.
As a result of the commitment and support of a number of organizations, the surgical team is planning to visit Honduras in March to work with physicians there. Supporting organizations and individuals include FedEx, ORBIS International, A.L. Ueltschi (ORBIS board chairman), and Gene Helveston, MD (Indiana University Medical School professor emeritus and ORBIS International Program Advisory Council member), as well as the Ministers of Health in Guatemala, Honduras and Panama. Guatemalan physicians working with the Memphis team were Margarita Engel-Barnoya, MD, Lissette Aguilar MD and Eugenia Sanchez, MD.