NHS Board Reviews Girl’s Therapy

Health board officials have begun a review to decide whether to fund treatment for an eight-year-old girl with a rare degenerative condition. The parents of Hayleigh Reynolds had been told NHS Greater Glasgow and Clyde would not pay for enzyme replacement therapy at a cost of £100,000 a year. Health officials said they sympathised, but the treatment had not been approved for use by the NHS in Scotland. They are reviewing the situation, with a final decision expected in December.

Hayleigh has a form of Mucopolysaccharidosis known as Hurler syndrome, which is caused by an enzyme deficiency. Her parents said she was the only patient in the UK to be refused therapy with the drug Laronidase, and that she may have to go to England for treatment. Her family had raised a judicial review of the decision at the Court of Session. However, the application for the therapy is now to be looked at by the health board.