Daniel Cressy hopes to use a breakthrough treatment to cure his sickle cell disease, which will make him the first person in the state of Louisiana to do so. Should his wish come true, he might be able to pursue his dream of becoming a pilot.
He recently had the first of two six-hour procedures at Manning Family Children’s Hospital to collect his stem cells in order to prepare for a treatment in which the cells will be sent abroad for editing and then reintroduced into him, directing his body to produce red blood cells with the proper shape instead of sickle-shaped ones.
“It’s uncomfortable at first, but then you kind of get used to it,” he told the Louisiana Illuminator.
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Cressy’s genes will be changed over the course of the following year and a half in order to eliminate what makes his red blood cells to sickle or harden and bend in a way that obstructs blood flow and causes excruciating pain.
The stem cells of the 22-year-old will be transported to a laboratory in Scotland, where they will be treated with an enzyme that can target a particular area of the cells and edit the gene to prevent the shape-changing of his blood cells. Cressy’s modified stem cells will be returned to Louisiana and reintroduced into his body.
More than 90% of patients in a clinical trial who received this treatment, known as Casgevy, survived at least a year without sickled cells impeding blood flow.
“Honestly, it’s a relief because it feels like it’s been a long time coming. Well, not only does it feel like it, but it has been a long time coming. And this is a huge step in the process, the collection part, hoping that we can collect enough cells so this can go as quickly as possible,” Cressy told WWLTV.
The procedure is long and costly. Cressy had to wait about a year to get inside this room due to insurance approvals, paperwork, and preliminary doctor appointments.
Three years ago, he discovered his love of flying, but after hours of lessons, working toward his certification, he was told his dream might be impossible.
The Federal Aviation Administration examines sickle cell disease patients’ medical histories when they apply for a pilot’s license. This is because cells may sickle faster at high altitudes, increasing the possibility of experiencing excruciating pain while in the air if oxygen levels are low.
Cressy filed for medical certification in 2022, but was denied despite multiple appeals. Cressy believed the condition was manageable. He hasn’t needed repeated hospital stays or blood transfusions to prevent pain, compared with other patients with severe sickle cell disease.
“One thing that people don’t understand is that sickle cell affects everybody differently,” he said. “I believed that I could fly without getting cured.”
However, the FAA was of a different opinion. When Cressy first requested the treatment, his hematologist, Dr. Zach LeBlanc, declined. A profession in aviation didn’t seem like a major medical priority to LeBlanc. But Cressy’s enthusiasm, along with an official rejection from the FAA, swayed LeBlanc’s decision.
“The more I got to know him, I understood that it wasn’t as superficial as it appeared the first time,” said LeBlanc, a pediatric hematologist with the hospital who was part of clinical trials to develop another long-term sickle cell cure. “He was really serious about this, and he understood the risk.”
The condition is particularly common in Black individuals, including Cressy. It is caused by a genetic mutation that arose and spread over Africa in response to malaria. People who only have one sickle cell gene are at least 90% more resistant to malaria, but those who inherit two sickle cell genes get the painful condition.
Traditionally, bone marrow transplants have been the most common approach for providing long-term treatment, but patients must meet particular requirements and find an unrelated donor with a close genetic match.
Finding the correct bone marrow donor is difficult, and Cressy did not have many alternatives for a treatment until the Food and Drug Administration approved two gene therapies in 2023. Children’s Hospital is the first in the state to receive approval to provide the treatments.
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The Louisiana Department of Health recently reported that at least 3,000 persons in the state had sickle cell anemia. Many patients require insurance in order to finance curative treatments such as Cressy’s.
The drug alone costs between $2 and $3 million. Stem cell harvest and injection, as well as further doctor visits, also cost several hundred thousand dollars.
Cressy hopes this is only the beginning. He is eager to eventually become one of the first commercial pilots with the condition and intends to advocate for additional sickle cell patients while he undergoes treatment. Cressy will be continuing the journey of a sickle cell friend who took part in a clinical study for gene therapy in Atlanta two years before.
They became friends after meeting on Reddit and sharing a similar flying challenge. Since then, that friend has obtained a pilot’s license, Cressy said.
“Becoming aviators with sickle cell was once something that people thought was impossible,” he told the Louisiana Illuminator from his hospital bed, wearing a Mr. Impossible t-shirt that he created. “My buddy has already proved to the world that it’s not. Nothing is impossible.”
