How Breakthrough Treatment Has Changed The Lives of Sickle Cell Patients

Gloria Ademolu would wake every morning in pain. The 26-year-old would need five prescription painkillers a day to cope with the agony caused by sickle cell disease. The engineering student is one of about 15,000 people in England with the genetic, lifelong condition, in which red blood cells are shaped like a crescent (or sickle) rather than a disc.

As well as episodes of extreme pain, Gloria, from Manchester, would need to receive eight bags of blood every six weeks during red blood cell exchange procedures that left her exhausted. The disease, which mainly affects people of Black, Asian and ethnic minority heritage, can damage organs and cause intense pain, as well as anaemia because the blood cells cannot carry oxygen effectively around the body, leaving sufferers with tiredness and shortness of breath.

But six months ago, Gloria’s life changed. She began taking Crizanlizumab, a treatment the NHS has given to 180 patients and counting after a deal to make it the first new drug for sickle cell in 20 years. A study suggests it can reduce A&E visits by 40 per cent.

“I hated getting exchanges because it was so painful,” Gloria says. “The last time I was like, ‘Enough, I’m done now.’ I told my doctor, ‘The treatment you said is approved: let’s just start.’ That’s what pushed me, I didn’t want to be in pain.”

There were times when Gloria said treatment options and awareness of sickle cell were so low, that she had to tell doctors in A&E how to treat her and share pain-relieving gas and air with other sickle cell patients.

Now she says she feels “excited” about life because of Crizanlizumab, which binds to a protein in the blood cells to prevent the restriction of blood and oxygen supply that lead to a sickle cell crisis – sharp stinging and throbbing sensations, sometimes suffered multiple times a year.

“I can see the difference in my energy levels and behaviour too,” Gloria told The Independent. “It’s making me want to go out more, go out there, get things done and meet new people.

“Usually I’d stay home and avoid going out because I’m scared of catching an infection but now I feel like I’ve gained a bit of my freedom back.”

Gloria described not just the physical pain, but the emotional and social burden of sickle cell, explaining that her health restricted her learning through days absent from school, missing out on events with friends and in some years spending more time in hospital than at home.

Living with this condition can make it difficult for many patients to continue in their jobs or other everyday activities.

Sanah Shaikh, 32, inquired about Crizanlizumab following the NHS announcement last year, saying at that point she “would do anything to increase her chances of being cured or improving her health”.

The drug is administered every four weeks, and costs £1,000 per vial, though the NHS says it has secured a confidential deal with manufacturers “at a price that is fair for taxpayers”.