Valley Stream boy is first to receive Zynteglo treatment in New York State

Valley Stream boy is first to receive Zynteglo treatment in New York State
Eight-year-old Yusef Ahmed received Zynteglo at Cohen Children's Medical Center, making him the first patient in New York State to receive the treatment. (Courtesy of Northwell Health)

Cohen Children’s Medical Center doctors administered Zynteglo, a treatment for a rare genetic blood disease, to an 8-year-old boy from Valley Stream, making him the first patient in New York State to receive the therapy.

Yusef Ahmed made history just one month after his eighth birthday when he received Zynteglo Jan. 9, just one of a handful of patients in the United States to have the treatment.

Dr. Charles L. Schleien is chair of the Department of Pediatrics at Cohen.

“It’s not often that we have the opportunity to participate in a moment of medical history,” Dr. Schleien said in a statement. “This is a wonderful achievement and a milestone in our ongoing mission to provide the best care possible. I am very proud of our team of clinicians and researchers who spent years bringing this effort to fruition.”

Ahmed was born with thalassemia, a rare condition often seen in people of Asian descent, according to Cohen. The young boy followed in the footsteps of his aunt, who also suffered from thalassemia and received crucial treatment at Cohen.

His aunt was just a child when she received bone marrow transplant surgery in 2008 at Cohen. She is now a 20-year-old college student.

But Zynteglo affords patients the opportunity to forego bone marrow transplant surgery and the draining search for a donor, according to Cohen.

Zynteglo therapy was a three-step process for Ahmed. First, doctors collected stem cells from his blood and sent them to a manufacturing site to be made into Zynteglo in 2023.

Then Ahmed underwent four days of chemotherapy starting Jan. 3. The purpose of the chemotherapy is to eliminate existing cells in the patient’s bone marrow to make room for the new Zynteglo cells.

After a two-day rest, Ahmed received Zynteglo through IV transfusion Jan. 9.

Since the transfusion, Ahmed started to produce normal red blood cells. He is now cured of the disease that was genetically transmitted to him upon birth, a sign that Zynteglo might be a viable option for more patients suffering from thalassemia in the future, according to Cohen.

Zynteglo is a one-time treatment for patients with beta-thalassemia, which is a blood disease caused by genetic mutations. These genetic mutations cause hemoglobin production to be reduced or wholly absent.

Hemoglobin is a protein in red blood cells that contains iron and transports oxygen, according to Mount Sinai Hospital. Low hemoglobin levels can indicate health conditions like anemia, leukemia and other cancers, kidney disease, chronic illness and so on, according to Mount Sinai Hospital.

Patients with the rare condition live with severe anemia and a lifelong dependence on weekly blood cell transfusions, according to Cohen. Only about 200,000 patients around the world with thalassemia are registered as receiving regular treatment, according to Thalassemia International Foundation.

But blood transfusions are not a permanent solution and can lead to other complications, including an increased risk of long-term illness and death due to an overload of iron in the blood, according to Dr. Jon Fish, head of stem cell transplants, cell therapy and pediatric hematology at Cohen.

“Patients living with beta-thalassemia who would traditionally require regular transfusion faced an increased risk of long-term illness and death,” Dr. Fish said in a statement. “That’s why the ability to treat our patients with Zynteglo represents a milestone in the care and treatment of our patients.”

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