For sufferers of sickle cell disease, agonising pain and fear are a cruel part of everyday life. But a major breakthrough has brought much-needed hope for the UK’s 17,500 patients, with a £1.6million gene-editing treatment to be offered to the worst affected in the hope of providing a ‘functional cure’.
Sickle cell is the fastest growing genetic condition in the UK where red blood cells are sickle shaped rather than circular. This leads to agonising blockages that damage organs and can lead to blindness or a fatal stroke.
On January 31, 2025, the NHS approved the use of Exagamglogene autotemcel for those who are eligible for a stem cell transplant but don’t have a matched donor.
The one-time treatment will be given to about 50 people in the UK per year and involves modifying the patient’s blood stem cells in a lab and reprogramming them to make red blood cells produce high amounts of foetal haemoglobin. The recipient undergoes high-dose chemotherapy to remove faulty cells from the bone marrow before the cells are transplanted back.
However, London-based NHS worker Calvin Campbell has lived with sickle cell disease for 60 years fears the limited numbers mean this isn’t the cure people had hoped for, “People start to believe I’m not going to have to go through this anymore and they’re told sorry, you’re not even going to be considered,” he told The Mirror.
“People need to stop using the word cure. The vast majority of people with sickle cell won’t be affected by it, you have to be unwell but not too unwell. But for the people who are eligible, it will most definitely help.”
Symptoms start from just six months old, which was the case for Calvin, 60, who has lived in agony ever since.
“It is akin to someone taking a baseball bat, smashing and breaking every single bone in my body then forcing me to run a marathon as they continue to beat me, and after all that I still have to get on with life while they carry on beating me,” he says of attacks, which are medically referred to as a ‘crisis’.
Triggered by everything from weather, stress and dehydration, the pain can last for days to weeks and usually requires hospital treatment with opioids.
For a chest crisis, Clavin says, “It is similar but more extreme and feels like a hot jagged knife has been jammed through the centre of my chest out of my back.
Calvin is a Senior Community Engagement Officer for NHSBT whose role is to specifically get Black and Brown communities to donate blood and organs.
He also sings in B Positive, a choir made up of people whose lives are affected by Sickle cell, created by the NHS to spread awareness and bring people together.
As a child, he temporarily lost his sight to retinopathy and later suffered severe sickle cell leg ulcers, a complication that left him in pain for over 10 years. It was so severe he lost all his skin and most of the flesh from below his knees down to the soles of his feet.
“You could have put your arm through the space in my leg, the doctor described my pain as akin to being set on fire,” he recalls. “And that wasn’t the worst, I ended up paralysed for a couple of years. No one has ever explained why.”
When his brother died tragically young, Calvin was met with wreaths at the door but when he looked closer, he froze – his name was on them. “People thought it was me that died, because I was the one that was always sick,” he said.
Calvin now has blood exchanges every four weeks, and was recently able to go on holiday for the first time. “It takes roughly 128 to 132 people a year to keep me alive and I’m only one person, so you can imagine how big the need is.”
His Consultant Haematologist, Dr Emma Draser, told how the exchanges have changed her patient’s life. “What stands out about Calvin is his persistence and determination to succeed despite his severe sickle cell disorder and its acute and long term impacts on his health.
“Calvin is always on the go. He is able to travel now, has an active family life with his grandchildren and extended family, not to mention the work he does for the NHSBT, our local patient support group and our network patient public voice group. I am always telling him to slow down.”
Of the new therapy, she adds: “I think the new gene therapy gives hope – it isn’t appropriate for all people with sickle cell disorder but it increases choice. Hopefully new trial medications will continue to be licensed and give people options for improved outcomes in sickle cell disorder.”
For now, most patients like Calvin rely on regular transfusions but finding the right match isn’t easy and can result in longer exchange intervals or fewer units of blood being given.
One of the donors making a difference is Amino Ali, a renal nurse who has the RO blood type – the closest match for sickle cell patients which reduces the risk of adverse reactions.
Amino, 29, from Oxford, found out she had the rare blood type after her first donation. “I felt really special when I was told, especially knowing that one donation could save up to three lives,” she says. “It’s just a small gesture to do something greater.”
“I’ve been encouraging my family and my friends and two of my friends have started donating blood and my siblings. I know that there are misconceptions that exist around donating blood, especially in the Black community, I do want to try and break the misconceptions because you are essentially helping out your own community and you’re not losing anything by donating.”
The Mirror visited the newly opened Brixton Donation Centre, which marks a significant step in increasing Black donations, with Lambeth having one of the largest Black populations in London.
In fact, 55 percent of Black people in London have the RO bloodtype, in comparison to 2 percent of other ethnicities.
As soon as you enter the waiting area of the centre, you are met with the moving hero wall of donors. The centre was made to feel like an experience, from the comfy donation chairs to the locally-sourced snacks that reflect the flavours of the neighbourhood, such as rum cake.
In January 2025, around 33 percent of all RO Blood donations in England and Wales came directly from South London blood donor centres, emphasising why this location is key for increasing the number of Black donors.
Marikany Keita, 20 was at the centre donating for the first time after seeing his friends affected by the disease.
“I want to help, I see it everywhere and know by donating my blood it will help people,” he says. Marikany knew he wanted to donate, but didn’t have any centres around him, until now. “I saw this last week and I said hold on, I booked it the exact same day. If I didn’t see this I wouldn’t have been here today. No way.”
WHAT IS SICKLE CELL DISEASE?
Sickle cell disease is a condition which affects the blood, causing red blood cells to take on a sickle or crescent shape.
This shape means that cells get stuck in blood vessels and block them, causing extreme pain or fatal long-term complications, including organ damage and strokes.
The inherited condition is particularly common in African or Caribbean communities and has become one of the fastest growing genetic conditions in the UK, with many needing frequent blood transfusions just to stay alive.
Symptoms can strike from six months old. According to the NHS, the main symptoms of sickle cell disease include episodes of pain, frequent infections and anaemia.
Treatment options include gene therapy, blood exchanges and transfusions, hydroxycarbamide (hydroxyurea) and stem cell or bone marrow transplants.
HOW TO DONATE
With demand for blood donations to treat sickle cell rising by 67 percent over the past five years, the NHS is urging more Black blood donors to come forward.
In the UK cases are rapidly increasing and demand for blood donations to treat the condition have risen by 52% in the last five years. The condition predominantly affects African and Caribbean communities however it can affect anyone.
For details about your closest centre and how you can help, visit www.blood.co.uk .
