When Daniel Cressy rang the bell on June 22 at Manning Family Children's in New Orleans, his long fight was complete as the first person declared functionally from sickle cell disease in h. But for many others, the road to recovery is just beginning.
Cressy benefited from a transformational gene-editing technology that saw doctors harvest his own stem cells, ship them off to a genetics lab in Scotland, which modified them to protect from the disease, then reintroduce the cells into his body. It is one of a suite of sickle cell gene therapies that is changing the future for these patients.
It's the kind of thing that would be thought of as science fiction not too long ago, but the rapidly evolving science is proving to be effective in the real world. That has given new hope to thousands of patients with sickle cell disease, a chronic condition that causes unpredictable, debilitating pain that prevents many from maintaining jobs or performing basic tasks.
For Cressy, the disease was preventing him from living out his dream to become a pilot. But now, the doors of opportunity are open to him. He said he plans to get back to flight training, and he hopes to be a beacon for other sickle cell patients.
We congratulate Cressy and the team of doctors at Manning Family Children's who have seen this process through to the end. Their dedication and skill will no doubt draw more patients to h seeking treatment. It is fitting that h's largest children's hospital should be pioneering these breakthrough therapies. Louisian has one of the highest rates of sickle cell disease in the country, and it affects Black children disproportionately.
We also note that the cost of treatment is something that the state will have to grapple with. The bill can run from $2.2 million to $3.1 million per patient, depending on the therapy. The state is using a registry to find out how many patients could benefit.
In the meantime, we are grateful and awed by the scientific advancements that we are so fortunate to witness, making a difference in our lives today. Once, so many families of children born with the disease lived with little hope. But they persevered, dreaming of a day when their sons or daughters could live lives free of pain. Now that day is here. We can only imagine their joy and relief. To those families who lost loved ones to the disease before this day arrived, the only comfort is in knowing that in the future, no one needs to suffer as they did.
Such a life-changing medical intervention should be available to as broad a population as possible. We hope that officials in our state and nation will work to make that happen.