The day the pain stopped
How gene therapy gave Jimi Olaghere his life back.
After 35 years of living with severe sickle cell disease, Jimi Olaghere became one of the first people in the world to receive revolutionary CRISPR gene therapy.
In January 2025, NICE recommended this groundbreaking treatment for use on the NHS in England.
Jimi's story shows why NICE’s approval really matters.
PART 1:
"Life was bleak. Very, very dark, hopeless"
Living in constant pain
Jimi Olaghere never knew what it felt like to wake up without pain.
"Life was bleak pre-transplant. Very, very dark, hopeless," he says. "I was just stuck. It felt like purgatory. To have this disease that affects people of colour and you don't see any progress."
Jimi has sickle cell disease SS, the most severe form. His red blood cells, shaped like crescents instead of smooth discs, would clog his blood vessels, starving his organs of oxygen.
His life revolved around hospital admissions and pain so constant it became part of his identity. He'd had his gallbladder removed, suffered cardiac arrest and pneumonia, amongst other complications.
The mental toll was as brutal as the physical one.
"It's almost like you're handcuffed to a bed, and you just watch life pass you by. I felt like my body was my own worst enemy. Life was extremely difficult, and honestly, I would’ve been happy not being here."
Then Jimi’s partner became pregnant with their first child.
"At that point in my life, I wanted to be alive, to be present for my child. I didn't want to pass the burden of caregiving to my children. When I heard about a clinical trial for a new type of gene therapy, I was desperate to qualify."
PART 2:
A roller coaster of emotions
The long road to treatment
The clinical trial involved using CRISPR technology to edit a patient's own stem cells, teaching them to produce healthy red blood cells instead of sickled ones.
The treatment process from January to November 2020 was extended by the pandemic. It involved 4 stages.
First came preparation: blood transfusions and exchanges to ready his body. Then collection: sitting beside an apheresis machine for 8 hours at a time while it separated his blood and harvested stem cells. Jimi needed 4 collection sessions, twice the typical number.
Next came the conditioning phase: 5 to 7 days of intensive chemotherapy to wipe out his existing bone marrow and make space for the edited cells.
Finally, the infusion: Jimi's own cells, now edited in a lab using CRISPR technology, returned to his body. Throughout it all, he was preparing himself mentally for what life might look like on the other side.
PART 3:
"For the first time in my life, the pain disappeared"
New opportunities and new challenges
In just a week Jimi felt like his life was transformed.
"I noticed the pain that had always lingered, no matter what medication I took, was gone," Jimi says. "For the first time in my life, the pain disappeared."
Despite Jimi's newly found pain relief, his overall response to treatment was more complicated.
"It was emotional. I thought it would feel fantastic, but instead I was confused. For so long, I had used pain as motivation, a chip on my shoulder to push forward in life. Suddenly, it was gone, and I had to figure out what life would be like without it."
As the weeks turned to months, Jimi began to embrace his new reality. He set himself a challenge: to become the first person with sickle cell disease to climb Mount Kilimanjaro, while raising money for treatments that could keep sickle cell patients alive long enough to one day access gene therapy themselves.
He made it to the top. "Going up Kilimanjaro was so much fun. Getting to the top was fantastic."
PART 4:
"Anybody who wants gene therapy should have access"
Breaking barriers to care
Today, at 40, Jimi lives in the Atlanta area with his 3 children. He's pursuing the career in private equity he always dreamed of.
"It's something I've always wanted to do but couldn't because I had to live life in 'gear 2' to avoid exacerbating my disease," he says. "Now I can go into gear 4, gear 5, and even find gears I didn't know existed."
When NICE approved exagamglogene autotemcel (exa-cel, also known as Casgevy) for use in England in January 2025, Jimi was elated.
"Anybody who wants gene therapy should have access to it," he says. "The UK has a completely different healthcare system than the US, which will benefit the sickle cell population there. I think it should be used as a case study for how to get Casgevy across the world."
He now speaks regularly with sickle cell patients around the globe, carefully helping them consider whether gene therapy is right for them. "For me, gene therapy was essential. It was riskier to live without it than to go through it. But for other patients, gene therapy might not be the right option.
"Living with a disease is a marathon. You can't look at the end goal. You have to take it one day at a time."
PART 5:
Groundbreaking therapy approved for NHS use
A milestone for equality in healthcare
Exa-cel is now available on the NHS in England for people aged 12 and over with certain types of severe sickle cell disease.
When assessing the treatment, NICE's independent committee took into account exa-cel's potential impact on health inequalities. Sickle cell disease is more common in people from African, Caribbean, Middle Eastern, or South Asian backgrounds.
The committee allowed more uncertainty in the evidence than would normally be considered cost-effective, recognising the transformative potential of this world-first treatment.
More data will be collected while patients receive the treatment on the NHS before NICE evaluates the medicine again.
"Exa-cel could represent a potential cure for some people with severe sickle cell disease, freeing people from the burden of complications as well as addressing NICE's aim of reducing health inequalities associated with the condition and getting the best care to patients fast."
For Jimi, NICE's decision represents hope.
"Life's good now, so much better than before. Gene therapies will eventually proliferate and become affordable, but we need to keep patients alive now for when that moment comes."
Find out more
Exagamglogene autotemcel (exa-cel, brand name Casgevy) is available on the NHS in England under a managed access agreement for eligible patients aged 12 and over with severe sickle cell disease.
The treatment represents the first use of CRISPR gene editing technology approved by NICE.
- Read our guidance on exagamglogene autotemcel for treating severe sickle cell disease in people 12 years and over.
- Use the resource on NICE and health inequalities - reducing health inequalities is one of our core principles and this resource offers help to improve population health as a whole, while offering particular benefit to the most disadvantaged.
- Subscribe to NICE newsletters and alerts for the latest health and care guidance, clinical updates and evidence-based resources.
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