NHS England announces breakthrough treatment for sickle cell disease
On 5 October 2021, the head of the NHS announced, that the first treatment for sickle cell disease in over 20 years will be rolled out to thousands of patients in England with life-saving benefits. The new drug, known as crizanlizumab, will be delivered by a transfusion drip and works by binding to a protein in the blood cells to prevent the restriction of blood and oxygen supply. People aged over 16 who suffer from multiple sickle cell crises every year will be eligible for the treatment.
Sickle-cell disease is incurable and affects 15,000 people in the UK. Sickle cell anemia is an inherited red blood cell disorder that is particularly common in people with an African or Caribbean background. Sickle cell disease causes severe pain and organ failure, often requiring hospital admissions.
Sickle Cell Society chair Kye Gbangbola said: “A new treatment brings new hope for people living with sickle cell disorder, the world’s most common genetic blood condition. SCD is a medical emergency, it causes excruciating pain. This new treatment will reduce the number of agonising pain episodes we have to endure. The hope is improved quality of life for many living with the condition and their families.”
And the National Institute for Health and Care Excellence said the hope of reducing health inequalities for black people, who are predominantly affected and often have poorer health to start with, made the drug worth recommending.
Diagnosed at birth, Sarah-Jane Nkrumah, 27, (pictured above) had her first crisis aged six months and has chronic pain in her joints. Every six weeks, she has a blood transfusion to boost her energy levels.
“Every day is pain,” she says.”I don’t remember the last time I had zero pain.” Sarah-Jane prefers to take breaks from taking painkillers – but some days cannot get out of bed. “You just have to try and manage it,” she says. “I don’t have a choice. “It’s all about having a lot of mental strength and support.”
Local Support Available
One of Birmingham Carers Hub partners, Oscar Birmingham, offers help to those living with the condition and also provides support to their carers. One Carer who has a child with Sickle Cell Disease contacted Oscar Birmingham because she was finding it difficult to manage her caring role, feeling low and had been struggling with depression. After encouraging her to connect with other carers and providing her with practical and emotional support, she said:
“You guys have been amazing to me. I have really been struggling over the past few months. Caring has been tough, but I have hope now and appreciate the support. Great that I can share my own experiences with other parents too.”
For more information about how Oscar Birmingham can support you in your caring role contact Sumera on 0121 212 9209 or email sumera.naaz@oscarbirmingham.org.uk
