KSHB 41 reporter Elyse Schoenig covers issues surrounding the cost of health care, saving for retirement and personal debt. Share your story idea with Elyse.
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On Wednesday, the Missouri Advisory Council on Rare Diseases and Personalized Medicine will convene on whether gene therapies will be covered for patients with sickle cell disease.
"I was told by my providers that I was not expected to live past the age of 25," Kevin Wake, a sickle cell patient and president of the Sickle Cell Disease Association of the Midwest, said. "And here I've exceeded my expiration date by more than double."
He lost his two brothers and a 20-plus year career in pharmaceutical sales to the disease.
Sickle cell is a deadly blood disorder that disproportionately affects Black people.
“I had [four] strokes, I had some kidney disease, which kind of forced me out of my career," Wake said. "And so that's a huge financial impact for me personally."
Gene therapy is a life-saving treatment for people with sickle cell.
With travel, hospitalizations, missing work, and treatment itself, the cost quickly adds up.
Data shows 50 to 60% of sickle cell patients are on Medicaid.
In the short-term, gene therapy is expensive, with a price tag up to $3 million.
But in the long term, experts say it can actually help patients save money.
"This is a complete game changer in their lives," Dr. Joseph McGuirk, professor of medicine and division director of hematologic malignancies and cellular therapeutics with the University of Kansas Health System, said.
Sickle cell affects about 100,000 Americans every year.
"Half of the people with sickle cell disease die before 42 years of age, and it can be absolutely terrible devastating, of course, to that point," McGuirk said.
He said the numbers prove that gene therapy can save lives and money.
“It is costly upfront but pays off in the long term,” he said.
And Wake is living proof of defying the disease’s odds.
“Not only to have to manage this disease, but not being able to work full time and hold down a career that I love," he said. "There's so many other patients that are in the same boat," Wake said.
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