New £1.65m sickle cell treatment to be offered on NHS in Birmingham

The National Institute for Health and Care Excellence (Nice) has approved Casgevy for certain patients with the genetic condition

Sickle cell disease (SCD) is a genetic blood disease that damages red blood cells
Author: By Kellie Maddox, Bauer Media and Ella Pickover, PA Published 30th Jan 2025
Last updated 31st Jan 2025

A £1.65 million treatment for severe sickle cell disorder will be offered at a specialist NHS centre in Birmingham after it was approved for use.

The gene-editing therapy will be offered to certain children and adults with the inherited blood condition after the National Institute for Health and Care Excellence (Nice) approved Casgevy as a treatment.

It is thought that 1,700 people could be eligible, with NHS officials estimating that around 50 people a year will receive treatment.

Casgevy works by editing the faulty gene in a patient's own stem cells.

Cells are taken from a patient to a laboratory where the Crispr technology is used. The edited cells are then infused back into the patient, which prompts the body to produce healthy red blood cells.

The only curative treatment currently available for people with sickle cell in the UK is a donor stem cell transplant.

Casgevy is an option for patients when a stem cell transplant is suitable but no donor can be found.

There are around 17,500 people with sickle cell disease in the UK. It is particularly common in people with an African or Caribbean family background.

Mehmet Tunc Onur Sanli, 42, from London, who was diagnosed with sickle cell disease aged 11, said: "Because of my illness, I often experience pain in my chest, bones, and muscles.

"I had surgery on my spleen when I was six and a hip replacement at 22 - I will probably need another hip replacement in the next few months or years.

"I also suffer from regular sickle cell crises - last year, I had to go to the hospital at midnight after waking up in severe pain, and overall, I had to visit the hospital five or six times due to crises.

"The pain is the worst I have ever felt in my life - it's hard to put into words."

NHS England chief executive Amanda Pritchard said: "This is a leap in the right direction for people with sickle cell disease - which can be an extremely debilitating and painful condition.

"This innovative, gene-editing therapy offers hope of a cure for people facing a severe form of the disease and could be absolutely transformative - it could enable patients to live free from the fear of sickle cell crises hanging over them.

"We are funding this new treatment option straight away so patients can benefit from the enhanced quality of life it offers."

John James, chief executive of the Sickle Cell Society, said: "We are absolutely thrilled to see this groundbreaking gene therapy treatment available on the NHS from today.

"The significance of this milestone for the sickle cell community cannot be understated - today's result will give hope to many and is the result of determined campaigning."

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