From a hotel room in in Tuscany, Italy, Victoria Gray joined the NPF Rare Diseases Reporting Fellowship on Nov. 17 to breathe life into the miraculous potential that scientific innovation holds for rare disease patients.

Until about six years ago, Gray’s story was shadowed by the excruciating pain of sickle cell disease.

“My life consisted of me going from the bed to the couch to doctor’s appointment at the hospital. If I had enough strength to go to church, and that was it. And this was an everyday routine where I even needed a personal care assistant in my home to help with a bath because my body would be so fatigued and wracked with pain that something as simple as a bath would cause heart palpitations and sweats.”

But Gray made history in July of 2019 by becoming the first person in history to receive a CRISPR-based genetic therapy for sickle cell disease. Over the past few years, Gray has spoken at sickle cell associations, biotech conferences and genomic medicine societies (she was in Italy to speak at the Act for Hope summit). In September of 2025, she also participated in the Summits for Sickle Cell hike in Colorado, something that would have been impossible before her treatment. Gray was joined on that hike by veteran science journalist Bijal Trivedi, a 2023 NPF Rare Diseases Reporting fellow.

Trivedi authored an award-winning book about cystic fibrosis, “Breath for Salt: A Deadly Genetic Disease, a New Era in Science, and the Patients and Families Who Changed Medicine Forever.” Her next book, “A Ghost in the Bloodline,” focuses on sickle cell disease in India, Nigeria and the U.S. She joined Gray during this year’s Rare Diseases Fellowship session, and the following are highlights from that conversation:

Medical racism and neglect are real

Besides the constant bouts of pain, another thing Gray confronted was blatantly unequal treatment in health care facilities in Mississippi, where she was born and raised.

“They would leave me in the ER waiting area anywhere from six, sometimes 12 hours in severe pain and it hurt. One particular visit, I had been there 12 hours. A white woman walked in, she has pink eye and she immediately gets called to the back while I’m there on the floor, can barely breathe. “

Gray also recalled an incident where a nurse purposefully administered a nausea drug instead of pain medication.

“I wake up and it’s like day one of having a crisis. It’s so severe.” When she found out what happened, she “made complaints to hospital administration, they dismissed it.”

A hospital stay in Nashville changed Gray’s life

Before making gene therapy history, Gray was scheduled to undergo a bone marrow transplant through a donation from her brother at the Sarah Cannon Cancer Institute in Nashville. She was worried about the possibility of graft versus host disease, in which a complication following transplants where the donor’s new immune cells attack the recipient’s body.

But when Dr. Haydar Frangoul came to Gray’s bedside and asked if she had heard the term CRISPR, a new horizon opened. “He goes on to explain that it would be like going into a textbook with thousands and thousands of words, finding that one word that’s misspelled, correcting that word without disrupting the story. So in theory, CRISPR would go in, edit my DNA to start back producing hemoglobin F, which is a healthier hemoglobin that babies produce that don’t allow them to sickle while they’re in their mother’s womb.”

When Frangoul assured Gray that she could pivot to the bone marrow transplant a year later if the CRISPR treatment failed, Gray made the prayerful choice to proceed. “I knew then that that was the treatment that God had waiting for me in Nashville.” The process was arduous, involving stem cell collection, high-dose chemotherapy that caused significant side effects, and a month-long hospital stay, but the result was no more pain crises.

CRISPR made Victoria Gray fearless

Trivedi traveled to Mississippi to interview Gray for “A Ghost in the Bloodline.” During that conversation, she learned about the Summits for Sickle Cell hike. For a veteran science reporter, it was an intriguing opportunity. “Basically, it was a real gamble for Victoria and the other warriors to do this because for their whole lives they’d been told to avoid cold, to avoid too much exercise because that could cause fatigue and fatigue drops the oxygen, which can cause a crisis. And then at high altitudes there’s very little oxygen as well, and that can trigger a crisis.”

Though Gray appeared to be living a normal life, it seemed like a scary proposition. But both women leaned into the adventure. “I suppose once you’ve taken that gamble, you’re fearless about everything else. I mean, we were both scared. I was scared because I was unfit. Victoria was scared because [of] … altitude, cold fatigue,” Trivedi said. “The opportunity to see what her resurrected body was capable of doing with gene therapy – it was not only a testament to her strength and the strength of the other warriors, but it was a test of the science.”

Elevating sickle cell treatment is significant

Sickle cell is “a very interesting disease from a scientific perspective because it was also one of the first disease genes discovered, and yet it was neglected,” Trivedi said. The disease disproportionately affects people of color worldwide: 66% of people with sickle cell live on the African continent, and the next highest percentages live in India and the Democratic Republic of Congo.

“Because it affected people of color, the disease was just neglected and pushed to a back burner,” Trivedi said. That makes the biotech innovation going into treating sickle cell disease an important change. “The science together with the social issues together with the different populations worldwide made a very compelling narrative.”

Access the full transcript here.

This fellowship is funded by Fondation Ipsen. NPF is solely responsible for the content.