Sickle Cell Awareness Month: Experts AvailableAs Sickle Cell Awareness Month approaches, St. Jude Children’s Research Hospital has experts available to discuss the sickle cell disease in children and adolescents, trait testing as well as transition programs that guide teen patients to the world of adult care. St. Jude faculty and staff are some of the most respected, credible and highly regarded sources in the world.
About St. Jude Sickle Cell Research and TreatmentWhile St. Jude is largely known for its work in pediatric cancer, the research and treatment of sickle cell disease has been entwined in the institution’s mission since its opening. Today, St. Jude treats more than 800 children a year with sickle cell disease. The disease can trigger episodes of extreme pain and cause life-threatening complications that range from organ damage and stroke to a pneumonia-like illness known as acute chest syndrome.
The only cure for sickle cell disease is bone marrow transplant; in 1983, St. Jude doctors were the first to make that discovery. Bone marrow transplant is not an easy remedy, and it has complications and limitations. That is why work continues at St. Jude to develop alternate approaches for treatment of children with sickle cell disease. Ongoing work by St. Jude seeks to understand how treatment with a drug called hydroxyurea can help children with the blood disorder. Hydroxyurea is an inexpensive and easy-to-administer drug routinely used to treat adults with sickle cell anemia. St. Jude led the recently concluded six-year study, called Baby HUG, that showed the drug is safe and effective for use in infants and toddlers with the disease. The multicenter trial was the largest trial of hydroxyurea in such young patients. A follow-up to the Baby HUG trial is now underway.
A new program at St. Jude is helping teens with sickle cell disease transition to adult care. Using a curriculum developed by the St. Jude Hematology department, social workers, physician assistants, academic coordinators, psychologists and nurses make up a patients’ transition team, gradually helping shift medical responsibility from the parents to the patient. These lessons are critically important because while sickle cell rarely kills children — among whom the survival rate is 95-98 percent—the mortality rate alarmingly rises during early adulthood. Since implementing the program, the percentage of patients moving from St. Jude to adult care facilities have increased from less than 15 percent to more than 75 percent.
Experts AvailableWinfred Wang, M.D., a member of the Department of Hematology at St. Jude, has devoted much of his career to finding better treatments for sickle cell disease. Principal investigator of the Baby HUG trial, he is leading a follow-up study to better understand hydroxyurea’s effects. Wang earned a medical degree from the University of Chicago and joined St. Jude in 1979.
Jane Hankins, M.D., is the medical director of the St. Jude-Methodist Sickle Cell Disease Transition Clinic, a program that helps adolescents understand and be responsible for their care as they age. She is also an associate member of the Department of Hematology at St. Jude. Hankins’ research focus includes decision-making in sickle cell disease; new therapeutic approaches in sickle cell disease; long-term effects of hydroxyurea in sickle cell patients and iron overload. Hankins earned a medical degree from Federal University of Rio de Janeiro, Brazil. She joined St. Jude in 2001.