AN ENNISCORTHY mother has said that she can now “finally see a future” for her little girl after it was officially announced that Minister for Health Simon Harris had reached an agreement with drugs company Vertex for the provision of the potentially life-changing drug Orkambi for cystic fibrosis sufferers.

Julie Forster has been involved in the bitter fight to allow CF sufferer’s access to the life-enhancing drug for the past 11 months. Her daughter Ruth, who is 3 years-old, is a potential candidate for Orkambi and Julie believes that access to the drug can drastically change the course of her life.

Minister Harris announced last week that CF sufferers would be given access to Orkambi and Kalydeco from next month, leaving Julie and thousands of other families dealing with CF over the moon.

“This is massive,” she said. “My little girl is in the bracket to benefit from this treatment. I can now see a future for her. I’m so hopeful for her now. I’m hopeful that she can have as good a future as my other two kids.”

While, initially, the drugs will only be made available to CF sufferers over the age of 12, they have recently been FDA approved for 6 – 12 year olds, so Julie is confident that by the time Ruth turns six, she will be able to go straight on the drugs.

“These drugs are prevention rather than cure,” she explained. “They can have a huge impact on young people who take them. As well as that, adults who take them tend to spend far less time in hospital than they would have. There are around 1,200 CF sufferers in Ireland and around half of those are eligible for this treatment, so it has the potential to have a massive impact on a lot of people.”

While Julie is delighted with the final outcome, she feels that there is something inherently wrong within the department of health in how they have dealt with the whole issue.

“I’m not sure if it’s Simon Harris, or if it’s the system itself,” she said. “But eleven months was much too long to wait for this. Then leaking statements to the press and refusing to talk to us for months on end was ridiculous. They did the right thing in the end though, and I’m thrilled they did.”

Ruth and Julie Forster. Pic: John Walsh