Last year, Jessica Sims learned that she was a viable candidate for gene therapy, which could cure her sickle cell disease (SCD). But the treatment doesn’t happen overnight; it is a months-long commitment, not only for the patient but also for their loved ones. The treatment will involve collecting her own blood stem cells (which produce red blood cells), modifying them, and reintroducing anti-sickling hemoglobin back into her body. As we celebrate World Sickle Cell Day on June 19th, Jessica shares her gene therapy journey with us.
Jessica Had a High Level of Fetal Hemoglobin as a Child
Jessica didn’t know that she had sickle cell disease at birth. Born in 1984, it would be three more years before states began following the recommendation to test newborns, and a couple of decades more before all states mandated it.
The Gary, Indiana native didn’t have a crisis until a few years later. “I was a toddler in a baby gown, and in a crib in a hospital, with an IV in my little hand, and I’m sure that was my first crisis,” she explained.
“My hematologist told me I had a high level of fetal hemoglobin that protected me from always being in crises, and so I would experience them, maybe once a year, and sometimes I would skip a year.”
Her history of experiencing a sickle cell crisis about once a year continued, even through college, when she attended Butler University in Central Indiana. But being a Black student with SCD at a predominantly white institution meant that she wasn’t around a lot of people familiar with her condition. So, Jessica built a support system with her mother and aunt, a nurse on speed dial, and friends by her side who could advocate on her behalf during any crisis.
The Challenge of Finding Adult Care
For SCD warriors, like Jessica, the transition from pediatric to adult care was challenging. Her decision to move to the Washington, DC area to pursue career opportunities made finding care even trickier.
“Google and our iPhones weren’t a thing yet, and everyone’s like, ‘Go to Howard!’ Once I landed a position with health insurance, I got my care at Howard,” she said.
When her hematologist moved to the NIH, she was referred to the sickle cell program at Inova Health, where she has been getting care for more than a decade. “In the last five years of my battling sickle cell disease, it has been more aggressive than it probably ever has been in my life,” she noted.
Her Doctor Recommends Gene Therapy
Jessica was aware of breakthroughs in gene therapy, but she hadn’t thought much about it before last year. That’s when her physician, Sheinei S. Alan, MD, PhD, Director of the Sickle Cell Program and Clinical Research at Inova Health, had a lengthy discussion with her about it.
“I think it was my February appointment last year; Dr. Alan sat me down. I did not know that that was even a thought in her mind at the time,” Jessica explained.
“But she had an hour-long conversation with me and said, ‘I really want you to consider gene therapy, and these are the reasons why I think you’d be a great candidate’.”
According to Dr. Alan, “Gene therapy is extremely transformative, and it’s really exciting. It’s a step in the right direction to provide help for patients, but two things can be true: it is exciting, it is hopeful, but at the same time it highlights the barriers to access, the gaps in knowledge, gaps in care, the advocacy we still need to do, and the awareness,” she said.
Dr. Alan points out that deciding about gene therapy isn’t a simple task. “You need specialists who can really sit down with patients and understand the implications of gene therapy and what it takes to undergo gene therapy. It really highlights to me how much every single patient needs to have that dedicated specialist, that dedicated care, that comprehensive evaluation and monitoring for their disease, and shared decision making for that decision.”
She Did Her Research
While gene therapy has a hefty price tag of $3.2 million, that is far from the only consideration. “In my very first conversation with her, Dr. Alan emphasized that this is going to take a lot of you, all of you, really, and a lot of your community,” Jessica recalled. “So, start to have conversations with the people that you love, your village, and just see which ways they’ll be able to support you throughout this journey.”
Jessica also did her research. Because Inova has a support group for its SCD patients, she learned about several conferences where sickle cell warriors were convening across the country. She found one that focused on gene therapy and pain management.
“At almost 40 years old, that there were sickle cell conventions, or that warriors were in community with one another, and I think that was a life-changing realization,” she said.
“I think I had done the research, met with some hematologists at my first treatment center, but there was that human aspect of it. People who know the things that we think about as warriors, and the things that we’re worried about.”
Getting the Answers She Needed
At that conference, she met a representative from Bluebird Bio (now known as Genetix), who makes the treatment she is undergoing called Lyfgenia. Jessica was able to get answers to her specific questions about the treatment, its risks, and potential side effects. (The procedure does come with a Black box warning.) Not long afterward, she met with a Patient Navigator who helped walk her through their process.
But the cost was still a huge consideration, and Jessica had some concerns. “I was still worried. I was like, I don’t know if my insurance will pay for $3.2 million treatment,” she recalled.
“Within that same week, I knew that my health care insurance paid for it, that they offer fertility preservation stipends, and that they would offer travel assistance for some of the treatments, and for that long hospital stay.”
She Was Covered By Insurance, But That Was Just the Beginning
As a candidate for gene therapy, Jessica needed to undergo a lengthy battery of tests, including several MRIs, EKGs, pulmonary function tests, and a bone marrow biopsy. Her village was critical in getting her through this process. The tests lasted from September 2025 through January 2026. It was only after testing was complete that Jessica learned she had been approved to move forward with the treatment.
“There’s a high bar that you’re well enough to be able to complete the gene therapy journey,” she noted.
The Stem Cell Collection Process
In May 2026, Jessica completed the process of collecting her stem cells for modification. To prepare for this, she had to undergo a series of blood transfusions. “In March, April, and May, I had to do monthly transfusions to have my sickle cells that are performing at their best in my body extracted,” she explained.
This can be a challenging point for many patients; for the gene therapy to work, doctors must be able to extract millions of stem cells. Not everyone has a successful collection their first time, but Jessica was fortunate.
“You don’t know if you’ll collect in one time, three times. Sometimes it takes people a whole year to collect, and some people aren’t able to collect stem cells at all,” she said.
She stayed in the hospital overnight and then recovered at home over the next week. Again, she relied on her village for support.
Her Next Steps
Jessica’s cells are now being modified with gene therapy. It can take about three months. In the meantime, this summer Jessica is getting herself ready for the next steps in the fall. “I’m just really preparing myself and my community for the care that I’ll need through that long hospital stay, which is about 30 to 45 days,” she said.
“Once you undergo the red cell exchanges, that’s to allow you to collect the stem cells, then. The stem cells are then sent off, and the patient, once the cells are ready to be put back into the patient, is then admitted into the hospital,” Dr. Alan explained.
“Chemotherapy is administered to essentially clear the way for the new cells to come and repopulate the body. And the patient is monitored closely to make sure that their body is making the cells—so hemoglobin, platelets, white blood cell count— and once a threshold has been met, where the patient can be safely discharged with close monitoring, then they’re discharged from the hospital.”
Dr. Alan stresses that this is not an easy process and that access remains an issue. “One of the things we really need to be aware of is that while it’s available, not everybody has access. The more of these we do, the more we learn of what we, you know, where we are and where we need to be heading and changing.”
Imagining a Life After Treatment
For Jessica, the idea of having a life beyond sickle cell is new. “I’m always so cognizant of my disease that I think that has been a limit or a barrier to me in things that I want to do, she said.
“And to think about a life where that isn’t the case, and the possibilities, it’s overwhelming, it’s a great feeling, and it’s like, okay, Jess, this is happening, and this, that can be your reality sooner rather than later.”
To learn more about the Lyfgenia process, including its risks and side effects, please visit lyfgenia.com.
