New treatment for sickle cell disease rolled out on NHS

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Loury Mooruth, 62, said she was “over the moon” to be among the first to receive the life-changing drug after suffering episodes of excruciating pain for all of her life. Crizanlizumab is delivered by a transfusion drip and can reduce chronic pain, cut A&E visits and dramatically improve quality of life.

Loury, from Walsall, received her first dose at Birmingham NHS Trust. She said: “People think you look fine but they don’t understand the pain and the trauma along with the many trips to A&E.

‘It’s like has a they are it through my “When I have a sickle cell crisis it’s like someone has a knife and they are ripping it through my joints – particularly my hips and legs.”

Sickle cell disease is an inherited condition in which sufferers produce unusually shaped red blood cells.

It is much more common among people from African and African- Caribbean backgrounds.

Patients suffer painful crises which can last up to a week and often require hospital admission so they can be given morphine.

Crizanlizumab works by binding to a protein in the blood cells to prevent the restriction of blood and oxygen supply that lead to a crisis.

Loury’s daughters – Katrina, 29, Bianca, 41 and Tonia, 37 – have not inherited the condition. Loury said: “Whenever I thought about having this new drug it brought tears to my eyes. I am so excited and over the moon because it is literally life-changing for me and my family.

“I want to encourage other eligible people with this disease to come forward and get this drug.”

The treatment is expected to reduce the number of times a patient ends up in A&E by two-fifths. It is being rolled out at 10 sickle cell centres across the country following an NHS deal for the drug last year.

Dr Bola Owolabi, NHS director of health inequalities, who is a GP in the Midlands, said: “It’s fantastic that our first NHS patients have been given this ground-breaking and historic treatment.

“It will allow patients to have a better quality of life, reduce trips to A&E by almost half and ultimately help to save lives.And thanks to an NHS deal we’ve been able to provide it at a price that is affordable for taxpayers.”

Chair of the Sickle Cell Society, Kye Gbangbola MBA, said: “We are delighted to see the first sickle cell patients are now getting access to this life-changing treatment.

“We encourage others that are eligible to do similar. Sickle cell crises cause extreme pain and are a huge disruption to daily life. We hope that this treatment will bring a new lease of life to many living with sickle cell.

“It is an under-served and underrecognised condition, so it is great to see a new treatment being made available after over 20 years.”

‘It’s like someone has a knife and they are ripping it through all my joints’

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