Treatment for sickle cell brings hope, a cure

Two brothers were cured of their sickle cell disease at UI Health using a relatively uncommon type of stem cell transplant performed without chemotherapy.

Their transplants were possible thanks to a third brother who, against long odds, was a match for both.

Julius and Desmond Means never imagined life without sickle cell. The brothers, ages 25 and 19, have spent their lives in and out of hospitals, suffering from complications of the disease.

Growing up, they tired easily and couldn’t keep up with their friends. As they grew older, the disease caused bone damage and affected Julius’ lungs. Desmond’s organs were damaged and he was jaundiced.

A transplant requires a healthy sibling who is a compatible donor. For an acceptable match, at least eight of 10 known human leukocyte antigen genes must be identical between donor and recipient.

Julius and Desmond’s healthy older brother Clifford, 27, matched 10 of 10 HLA genes with both of them — an occurrence of “extremely low” likelihood, said Damiano Rondelli, director of stem-cell transplantation at UI Health.

“I had won the lottery of health,” said Beverly Means, their mother.

In preparation for the transplant, Clifford was given medication to increase the number of stems cells released from the bone marrow into the bloodstream.

His blood was then processed through a machine that collects white cells, including stem cells. The stem cells were frozen until the transplants.

Last May, Julius received his transplant at UI Hospital. He was given medication to suppress his immune system, with one small dose of total body radiation right before the transplant. Then the frozen bags of stem cells were thawed and given by IV.

In September, Desmond received his stem cell transplant.

Now, months after the transplants, both Julius and Desmond no longer have sickle cell disease. Their bone marrow is producing healthy red blood cells.

“Being cured, I feel like we can do anything,” Julius said.

The brothers are pursuing their interests in rap music and dance and plan to attend college.

The chemotherapy-free stem cell transplant is a new procedure that is much better tolerated by patients with aggressive sickle cell disease, who often have underlying organ damage and other complications.

UI Health is the first center in the Chicago area to offer this treatment; one other patient has been successfully transplanted here. UI Health physicians are studying the effectiveness and safety of the pre-transplant medication procedure.

About 30 adults have received chemotherapy-free stem cell transplants for sickle cell disease at the National Institutes of Health in Bethesda, Md., with a cure rate of about 85 percent.

Sickle cell affects as many as 100,000 people in the U.S., predominantly of African ancestry.

The disease, an inherited defect that causes the red blood cells to become crescent-shaped, can cause extreme pain and damage to the lungs, heart, kidneys and liver, with life-threatening complications like stroke.