WASHINGTON, D.C. – Rep. Earl L. “Buddy” Carter (R-GA) will attend Thursday’s State of the Union (SOTU) address with guest Jennelle Stephenson, a sickle cell disease (SCD) patient who received one of the first successful curative sickle cell treatments approved by FDA in December 2023.
Jennelle’s story highlights the life-saving miracle that is American medical innovation and underscores the need to improve quality of life for chronic disease patients, especially those with SCD, which is the most commonly inherited, blood disorder that affects more than 100,000 people in the United States.
“As a pharmacist for over four decades, I know how important it is for patients to have access to life-saving treatments and cures for chronic diseases. American innovation cures the world, and SCD patients are one step closer to living pain-free lives because of it. Jennelle Stephenson is living proof. We must ensure that our policies incentivize medical research and development – not hamstring it,” said Rep. Carter.
Diagnosed at birth, Jennelle battled daily challenges associated with SCD prior to receiving treatment. These included painful episodes that caused temporary mobility loss. While she notes that SCD made it difficult to keep up with her peers, she did not let it stop her, having received a master’s in health care administration, among other accomplishments. She says that her biggest motivator has been seeing, experiencing, and benefitting from the advancements in gene therapy that allow for the potential of a pain-free life.
“I am honored to attend the State of the Union alongside Rep. Buddy Carter, who is a long-time advocate for chronic disease patients, myself included. As someone who has spent the majority of my life experiencing the agonizing pains of this chronic illness, I have a unique understanding of the hope, freedom, and health that cures bring to patients. I was fortunate to be among the first patients who have received what was then an experimental curative treatment for Sickle cell disease. I’m excited that the thought of a sickle cell free life is no longer a dream but a living reality. I’m excited to advocate on behalf of people living with sickle cell disease during this significant moment for my community. I am grateful for the opportunity to speak to the needs and experience of people living with sickle cell disease,” said Jennelle Stephenson.
Recipient of the MTS Sickle Cell Champion Award, Rep. Carter leads several bills with the goal of improving quality of life for SCD patients. Recently, he introduced H.R. 7432, the Sickle Cell Disease Comprehensive Care Act, with Reps. Michael C. Burgess (R-TX) and Danny K. Davis (D-IL), which is a bipartisan bill that will improve access to high-quality outpatient care for individuals living with SCD.
Read more of Jennelle’s story here.
Read H.R. 7432 text here.
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