There’s good news ahead for those who live with sickle cell disease. For the first time in 20 years, there’s a new sickle cell treatment that will keep thousands of people out of hospital over the next three years, NHS England has said.
Sickle cell disease, an incurable disease that affects 15,000 people in the UK, is caused by a gene that affects how red blood cells develop. Symptoms begin showing from early childhood and while the disease is lifelong and requires medication, many patients lead relatively normal lives.
However, they can suffer regular and painful episodes, caused by sickle-shaped red blood cells blocking the small blood vessels. This new drug, which is called crizanlizumab, is designed to reduce those episodes.
The drug is injected into a vein and can be taken by itself or alongside standard sickle cell treatment and regular blood transfusions. During the medical trial, patients taking crizanlizumab had a sickle-cell crisis 1.6 times a year on average, where normally they might experience one three times a year.
The National Institute for Health and Care Excellence (NICE) said the hope of reducing health inequalities for Black people, who are predominantly affected by sickle cell and often have poorer health to start with, made the drug worth recommending.
Nice called it “an innovative treatment”, while NHS chief executive Amanda Pritchard hailed it as an “historic moment” for those with sickle cell disease.
The trial was small and only lasted for a year so the long-term benefits of the drug are unknown, making it difficult to judge how cost effective it would be. NICE has recommended its use for over-16s, but under a special arrangement rather than routinely on the NHS.
“This revolutionary treatment will help to save lives, allow patients to have a better quality of life and reduce trips to A&E by almost half,” said Pritchard.
“The NHS has agreed a deal for this drug, so we are able to provide the latest and best possible treatments for patients at a price that is affordable for taxpayers.”
How sickle cell impacts Black lives and families
The charity Sickle Cell Society said that the treatment brought “new hope” for people living with the world’s most common genetic blood condition.
Sickle cell has a huge impact on the Black community in particular.
Vauxhall MP Florence Eshalomi, 39, found out she carried the sickle cell trait while pregnant with her son. The mother of two inherited it from her mother who lived with the disease and who eventually succumbed to it. Though Eshalomi’s son doesn’t have the trait, her daughter does.
“It was a shock to me,” she previously tells HuffPost UK. “My mum was one of 12 kids, same mum and dad, and the only child with the disease. Some of my aunts have the trait; the disease doesn’t discriminate. It doesn’t pick who it affects.”
Both Charlene Taylor, 27, and her partner, also have the sickle cell trait. But while she had always known she was a carrier, her partner only found out he was too when she became pregnant with their first child, who was born in 2017. She previously told HuffPost: “In the Black community, it is common for people not to enquire about their family health history as they should.
“So it’s difficult to pick up whether this gene runs in your family or not. People just go about their lives until they meet someone with it or you get tested – and you’ve got it. Then it just hits you.”
For more information and support, visit the Sickle Cell Society website or call its helpline numbers, open Monday to Friday from 10am to 5pm.
