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Killeen survivor reflects on newly approved sickle cell treatment

The FDA approved a powerful treatment for sickle cell disease, a devastating illness that affects more than 100,000 Americans, majority of whom are Black.

KILLEEN, Texas — The long awaited day of reliving pain for people suffering from sickle cell disease has finally come. 

On Friday, Dec. 8, the Food and Drug Administration approved two milestone treatments, Casgevy and Lyfgenia, representing the first cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older.

Sickle cell disease is a group of inherited blood disorders affecting approximately 100,000 people in the U.S. It is most common in African Americans and, while less prevalent, also affects Hispanic Americans. 

Founder of the Sickle Cell Foundation of Killeen/Fort Cavos Kimberly Jenkins told 6 News this day has been long awaited as living with sickle cell can be quite painful every day.

"People living with sickle cell are in pain so often and many don't even know it," Jenkins explained. "Living with sickle cell will make you aware of just how many joints are in your body because they're always in pain."

Jenkin's parents learned she had sickle cell when she was two months old. Since then, Jenkins says she's served as a poster child for living with the disease in the Killeen area.

In her adulthood, Jenkins says she witnessed a lack of organizations focused on people living with sickle cell in the Killeen, Temple, and Waco area. This is one of the many reasons why she decided to launch her organization in February 2023.

"I want to make people more aware of this disease while also being a voice to those who are living with it in the community," Jenkins added. "It's not funded heavily like other diseases like cancer or leukemia. Having that little light at the end of the tunnel with this cure is very great."

Experts argue the cost of this treatment puts it out of reach for many families.

The price tag is expected to be $2.2 million dollars, but it's likely insurance will cover at least some of it.

Technically it is one procedure, but the entire process is arduous, lasting several months.

Jenkins is working on putting together community events to spread awareness of the disease in 2024.

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