AN ENNISCORTHY family is among those affected by Cystic Fibrosis across the country speaking out against the government as a result of their refusal to fund a new ground-breaking drug which has the potential to help up to 600 sufferers in Ireland.
Three year-old Ruth Forster is a CF sufferer and her parents Julie and Karl are among concerned parents across the county and country calling on the government to fund a new drug, Orkambi, which can increase lung function and weight in sufferers, as well as slowing the disease’s progression.
The disease is an inherited chronic disease which primarily affects the lungs and digestive system.
“Cystic Fibrosis is in general diagnosed from the heelprick that every newborn baby has done now,” said mum Julie. “However, Ruth was unwell from birth, the main issues being a bowel blockage and a failure to thrive. She was moved from Wexford General to Crumlin Children’s Hospital where she was diagnosed with CF at three weeks old.”
Somewhat unusually, Julie was also diagnosed with a very mild case of CF after she and Karl underwent genetic testing a year after Ruth’s birth.
“My results came back showing two CF mutations, meaning I also have CF,” said Julie. “My symptoms are very mild though. It’s incredibly rare to be diagnosed with any form of CF at my age. I had had a digestive problem earlier a number of years ago and as it turns out, that was down to the CF.”
However, while Julie’s CF is a very mild form, she and her husband Karl potentially face a long and difficult and unknown road with their daughter Ruth.
“My daughter’s issues are in the main gastric at present, pretty manageable with medication,” she said. “But CF by nature is an unpredictable illness, you have no idea what tomorrow or next week will bring, let alone a few years.”
Julie has been left devastated by the fact that the Irish government are refusing to fund a new drug which has the potential to vastly improve her daughter’s life. Orkambi works specifically for sufferers with the DDF508 genes, of which Ruth is one. The drug has been approved in places like the US and Germany and in some cases has dramatically reduced the number of hospital admissions a person with CF has.
The drug was rejected in Ireland as being too expensive at a cost of €160,000 per patient per annum.
“Tony O’Brien of the HSE said in a statement that the price to Ireland would fund a year of budget of Temple Street Hospital,” said Julie. “This is putting a price or monetary value on my child’s life and almost 600 others.”
Julie says that at least seven other children in County Wexford are suitable for the drug and is calling on the government to take action and fund the drug.
“People with CF need this medication available to them, some need it right now, others it should be available to when they come of age or their condition worsens,” she said. “It’s not just about how much better they may feel physically but it could be the difference in a child being able to attend school or an adult being able to take a job and being able to have a somewhat normal life.”
For more from our Spotlight on Cystic Fibrosis, see this week’s Echo
Ruth and Julie Forster. Pic: John Walsh