An Enniscorthy mother will join with parents from across Ireland in the AV room in the Dáil on December 1 to push for the funding of Orkambi – a costly life-improving drug for people with Cystic Fibrosis.
Julie Forster from Ballindaggin will join with representatives from 14 other families to highlight their need for the drug Orkambi following an invitation by Sinn Féin to Leinster House. She will attend the presentation on behalf of her three-year-old daughter Ruth, who suffers from Cystic Fibrosis and could benefit from the drug.
‘Often when people with CF get older, they get a lot of lung infections and complications and have to go to hospital every six weeks. I know of some people who have been on the trials for Orkambi and their hospital visits have been brought down from every six weeks to once or twice a year,’ said Julie. ‘It is certainly not a cure but it improves their quality of life. It will allow kids to miss less school and in future, they may even to be able to hold down jobs which otherwise, wouldn’t have been a possibility.’
At present, Ruth’s condition isn’t too severe and Julie said that she has had no issues with her lungs as of yet. However, her illness has led to problems with her bowel and pancreas which inhibits her body from breaking down fats. This means that she must take enzymes daily, while she also does physio for twenty minutes twice a day to keep mucus off her lungs.
Julie and her husband Karl must bring Ruth to Tallaght Children’s Hospital once every three months, with a full health check once a year.
Though Julie said that Ruth is ‘lucky’ so far, she knows many others whose symptoms are much more severe and said she fears what the future could hold for her own daughter.
‘It’s so unpredictable. She could stay like this until she is 18 or she could get an infection next year. Some people don’t have problems until they are adults,’ she said. ‘It’s very scary. I’m in conversation with other parents whose kids are really well one week and the next, they are in intensive care.’
‘Even though I try not to think about it, it is always in the back of your mind.’
Orkambi, which has been developed by American drug company Vertex, is currently available in the US, France and Germany. The possibility of bringing it in to Ireland has given parents hope that their children could have a better quality of life. However, a ruling on the initial review by National Centre for Pharma Economics recommended that the drug is not funded due to the high cost. According to Cystic Fibrosis Ireland, the HSE and Vertex are currently in negotiations concerning on the price of Orkambi but whether this will result in a deal remains unclear.
‘It will cost about €150,000 per patient per year. I agree that the price has to be negotiated. But we need an update. It is almost six months and we still have no update on it,’ said Julie.
Following a recent meeting in the Dáil, Sinn Féin invited the committee for the Parents of Children with Cystic Fibrosis to give a presentation in the AV room in the Dail on Thursday December 1 at 9.30 a.m. Through their presentation, Julie said they hope to gain cross-party support for their plight and subsequently, get the push they need to get funding for the drug.
TDs James Browne, Paul Kehoe, Mick Wallace, Brendan Howlin and Michael D’arcy have been invited by the Wexford parents to attend. Julie said that so far, she has received a definite confirmation of attendance from James Browne, saying that the others haven’t guaranteed anything just yet.
‘We hope that when they hear the speakers and what they are going through, they will support it. Cystic Fibrosis is a very invisible disease. I knew nothing about it until Ruth came along if I am honest,’ she said. ‘We hope to gain support and push on the negotiations on the drug.’
‘Ireland has the highest incidence of Cystic Fibrosis in the world so this is more important for us than some of the larger countries.’
‘We are fighting to give everyone the opportunity to try Orkambi if they wish to. At present, we are being told that it isn’t showing enough improvement in lung function. They have to look at the bigger picture, not just at the figures. If they do, it is clear that it improves the quality of life.’
The group has pointed out how the lives of 600 people with Cystic Fibrosis could be prolonged for years if public money was better spent. For example, they have said that Wexford VEC pays €420,000 rent on an unused building, which could save 2.6 lives.
(First published in the Enniscorthy Guardian newspaper: print edition. Also available online at: http://www.independent.ie/regionals/enniscorthyguardian/news/parents-bring-cystic-fibrosis-fight-to-dil-35215465.html)