WIREDGOV

One of the first patients to access a ground-breaking treatment for sickle cell disease on the NHS says she is “over the moon” to have received the “lifechanging” new drug.

Loury Mooruth, 62, from Walsall in the West Midlands, is one of the first people to receive crizanlizumab at Birmingham NHS Trust – the first new treatment for sickle cell disease in over two decades.

The new treatment, crizanlizumab, will reduce chronic pain, trips to A&E and will dramatically improve patients’ quality of life.

Thanks to an NHS drug deal, as many as 5,000 people will be treated over the next three years – much earlier than would have otherwise been possible.

Speaking after her first treatment, Loury yesterday said:

“Sickle cell has been part of my entire life. People look at you and think you look fine, but they don’t understand the pain and the trauma along with the many trips to A&E.

“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.

“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 lifechanging for me and my family. I really want to encourage other eligible people with this disease to come forward and get this drug.”

Crizanlizumab, delivered by a transfusion drip, works by binding to a protein in the blood cells to prevent the restriction of blood and oxygen supply that leads to a sickle cell crisis.

Patients with sickle cell suffer from monthly episodes, making it difficult for people to continue in their jobs or other everyday activities.

The drug is expected to reduce the number of times a sickle cell patient needs to go to A&E by two fifths.

Sandwell and West Birmingham Hospitals NHS Trust, is one of the 10 new dedicated centres to treat sickle cell disease across the country. Patients will be able to access the new treatment through their consultant at one of these clinics regardless of where they live in the country.

The hereditary condition is much more prevalent among people with an African or African-Caribbean family background.

Dr Bola Owolabi, NHS Director of Health Inequalities, who also works as a GP in the Midlands, yesterday said:

“It’s fantastic that our first NHS patients have been given this ground-breaking and historic new treatment for sickle cell disease – the first in over two decades.

“This revolutionary treatment will allow patients to have a better quality of life, reduce trips to A&E by almost half and ultimately help to save lives.

“Thanks to the NHS’ deal for this treatment we have been able to provide the latest and best possible treatments for patients at a price that is affordable for taxpayers.”

Crizanlizumab is the latest in a line of NHS drugs deals that is seeing patients benefitting from new cutting-edge treatments, including a new life-changing cystic fibrosis treatment for children and a ground-breaking new drug that can significantly reduce the risk of cancer returning.

Chair of the Sickle Cell Society, Kye Gbangbola MBA yesterday said:

“We are delighted to see the first sickle cell patients are now getting access to this life-changing new 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 new treatment will bring a new lease of life to many living with sickle cell.

“Sickle cell is an underserved and underrecognized condition, so it is great to see new treatments being made available after over 20 years. We hope that this will be the first of many new treatments being made available to improve the lives of those living with sickle cell.”