A transformational gene therapy that reverses the bleeding disorder haemophilia B is being made available on the NHS. Elliott Collins was one of the first to get the treatment when he took part in the trials that proved it worked. He says he "feels cured" and the gene therapy has given him a "new lease of life".
The treatment is one of the world's most expensive, with an official cost of £2.6m. When you cut yourself, the body senses the injury and activates a series of clotting proteins in the bloodstream.
This makes the blood sticky at the site of the wound and then seals it with a clot. But from the day he was born, Elliott was unable to made enough clotting factor IX (nine). Without this crucial clotting component, bleeds are bigger and longer.
Bleeds also happen spontaneously inside joints - such as the knee or elbow - causing long-term damage. Elliott, who is 34 and from Colchester, rebelled against his diagnosis as a child by sneakily playing rugby or skateboarding. But any injury risked a damaging bleed, like when he was tackled playing football.
"I got studs right across the shin and that came up like a cartoon, like Tom and Jerry," he said. Elliott needed injections of factor IX twice a week - and more if he was injured - for 29 years. "I would have to think about it all the time," he said.
But he took part in trials of the gene therapy when it was still just an experimental idea in 2019. Since then, he has not needed any factor IX injections and says it has transfo.
