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 a new treatment for sickle cell disease in more than two decades.
The new treatment, crizanlizumab, is expected to 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 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.
This is the truth about Sickle Cell. One week into our wonderful holiday and I had to go the local clinic who knew exactly what to do. Sickle cell crisis is unpredictable any place any time. No matter who you. I have put this picture so people understand the severity of the pain. pic.twitter.com/MIeXO6h2wS
— Loury Mooruth (@LouryMooruth) December 8, 2018
“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.
The hereditary condition is much more prevalent among people with an African or African-Caribbean family background. 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.
Dr Bola Owolabi, NHS Director of Health Inequalities, who also works as a GP in the Midlands, 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.
“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.”
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 new treatment. We encourage others that are eligible to do similar.
“Sickle cell is an underserved and underrecognised 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.”