Manchester teenager becomes the first in the North West to trial 'life changing' sickle cell drug
Video Report By Granada Reports journalist Tasha Kacheri
A teenager in who's sickle cell disease causes him severe pain has become one of the first people to be given new drug dubbed 'life changing' by the NHS.
19 year-old Shiloh Stephens from Burnage in Manchester is one of 5,000 people who will be treated with crizanlizumab over the next three years.
It's the first new treatment for the condition in more than two decades.
Shilioh is actually the first person in the North West to receive it, it could half the amount of time he spends in hospital. "It hurts a lot and it's frustrating," the teenager said.
His dad Ray hopes that this drug can go some way to giving Shiloh a normal life.
"It's really hard to see him in so much pain and it hasn't gotten better as he's gotten older", he said.
He's also calling for more Black people to donate blood. "Sickle cell sufferers need a lot of blood, and every time you donate you could save up to three lives."
NHS chief executive Amanda Pritchard said: “This is a historic moment for people with sickle cell disease who will be given their first new treatment in over two decades.
“This revolutionary treatment will help to save lives, allow patients to have a better quality of life and reduce trips to A&E by almost half."
Many Sickle Cell sufferers and advocates welcome the new drug but are realistic in thinking that it wont work for everyone.
Anthony Mason from Sickle Cell Care Manchester says a wider piece of work needs to be done around supporting organisations, educating people about sickle-cell and helping people at home.
"It's long over due, but 5,000 people over the next three years, bit of a postcode lottery aspect," he said, but he acknowledged the breakthrough is "still as marked improvement."
He thinks improving education and increasing support could save the NHS money and limit the time that people with sickle cell spend in hospital.
What is Sickle Cell?
Sickle Cell Disease is an inherited blood disorder that causes red blood cells in the body to be an unusual shape.
The blood cells have shorter lifespans compared to normal red blood cells and they don't move as smoothly through blood vessels, blocking them, causing major problems.
The condition mainly affects people of African and Caribbean descent.
What does Crizanlizumab do?
Crizanlizumab binds to a molecule in the blood called P-selectin on the surface of platelets and endothelium in the blood vessels making it harder for blockages in the blood vessels to occur.
It's is the first new drug to tackle Sickle Cell in nearly 30 years.
It's is given in as a drip in hospital once every four weeks to prevent episodes of pain and some other complications in people with sickle cell.