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The word “energetic” takes on new meaning when it’s applied to 4-year-old David Cooper. If he had his way, he’d spend every day playing outside—running around the backyard, hanging upside down from his swing set like a lemur and defending his fort from invisible bad guys. In September 2002 when he complained of being too tired and sore to play, Collette Mathis, his mother, knew something was not right.
“He would tell us that his legs were broken,” Collette says. “It was like he was having a seizure. Suddenly, he would turn horribly pale, his lips white. He would spike a fever and cry that his legs and ankles hurt. Then, about 20 minutes later, the fever would be gone and he’d be back to normal.” The episodes intensified for about two weeks. At one point, David collapsed when his mother tried to stand him up.
“I kept taking him to the doctor and they’d tell me he had a virus or that he should see an orthopedic specialist for his joint pain,” Collette explains. “Finally, I sat down with him in the waiting room and said: ‘We’re not moving …We’re going to camp out here till you figure out what is wrong with him!’”
St. Jude Children’s Research Hospital has an affiliate in Baton Rouge, Louisiana. This affiliate is in the same building as the medical clinic David visited. When David’s blood work was complete, an oncologist from the affiliate came to talk to them. “I finally got an answer,” Collette laughs sardonically, recalling the moment she was told her son had acute lymphoblastic leukemia (ALL). The oncologist told Collette to book a flight to Memphis.
Within hours of arriving at St. Jude, Collette and her family knew that David would be taken care of, that all stops would be pulled to make sure he received the best treatment. And at St. Jude, there would be no question that he would fare as well as a white child with a similar diagnosis.
Although treatment results for children of all races with ALL have improved since the 1980s, African-American children have not fared as well as white children in large national trials. “These results were always attributed to the fact that black children often present with high-risk leukemia, but the fact is that with access to modern effective therapies delivered by an experienced and dedicated team of caregivers, black and white children should have equally excellent treatment outcome,” explains Ching-Hon Pui, MD, director of the St. Jude Leukemia/Lymphoma division and lead author of a study documented in the October 2003 Journal of the American Medical Association.
A team of 15 doctors and researchers compared therapy outcomes for ALL patients treated at St. Jude. The team found that with equal access to effective therapy, both African-American and white patients could expect high cure rates.
“This study shows that equal access to the most effective therapy abolishes the racial differences that continue to exist at other treatment centers,” says William Evans, PharmD, the hospital’s scientific director, and an author of the study. “This is what St. Jude is all about: developing the best therapy and making it available to everyone; going the extra mile to ensure equal access to all patients. At St. Jude, we are dedicated to developing therapy that cures every child, and this is another step in the quest.”
The study included 406 children with newly diagnosed ALL. The patients received the same treatment until the leukemia was in remission; then the children received 120 weeks of a personally tailored approach to treatment. Patients deemed to be at low risk for cancer recurrence received less aggressive therapy than those considered to be at high risk.
At the end of 10 years, the survival rates were 86.2 percent for African-American children and 80.3 percent for white children. In addition, 74.8 percent of African-American children and 73.6 percent of white children did not develop a recurrence or a secondary cancer.
One of the main reasons St. Jude is able to offer superior care to all patients is because the institution is the only pediatric cancer research center where families never pay for treatments not covered by insurance, and families without insurance are never asked to pay.
“We are color blind at St. Jude,” says Pui. “Because of the resources provided by ALSAC, our dedicated fund-raising organization, we do not need to be concerned about the cost of certain tests or drugs. If we think a patient needs a certain test or drug, we never second-guess the way other institutions worried about insurance coverage do. We do not have to wonder: ‘Does this patient really need this?’”
Another reason St. Jude produces such good results is because the hospital has vast experience in treating children with leukemia. “We are super-specialized here,” explains Pui. “We have doctors, nurse practitioners, nurses, pharmacists and social workers who just take care of patients with leukemia, nothing else. Because of this, we have more experience and see many more cases of children with a large variety of leukemia than people elsewhere.”
Scott Howard, MD, an assistant member of Hematology-Oncology and an author of the study, says St. Jude clinicians are able to save so many lives because of the generosity of donors. “It’s gratifying to be able to offer the same cure rates for black children that white children have enjoyed for years. And even more so since a higher proportion of black children have higher-risk leukemia,” says Howard. “We are lucky to be able to offer social services and support services to children of all races and economic levels. These results are a tribute to the generosity of the donors who make it possible to run St. Jude.”
Reprinted from Promise magazine, winter 2004.