My battle for drug: It’s like living on death row Cystic fibrosis sufferer’s ordeal
A Stonehouse woman battling cystic fibrosis has made a desperate plea for a drug that may prolong her life.
Laura Ewing (26) was diagnosed with the condition at just two-days-old, and says living with it “is like being on death row”.
The former Larkhall Academy student is calling for the Scottish Government to fund Orkambi, a drug that may give her extra precious years of life.
Cystic fibrosis is a genetic condition affecting around 1000 people in Scotland. People with CF experience a build-up of thick, sticky mucus in the lungs, digestive system and other organs causing a wide range of debilitating conditions affecting the entire body.
There is no cure for the disease and the average life expectancy is currently 31.
The Scottish Government says talks between Orkambi manufacturer Vertex and NHS National Procurement are “ongoing”.
At present, a prescription for Orkambi costs approximately £104,000 per patient each year.
Laura said: “Having cystic fibrosis is like being on death row, it’s like a ticking timebomb and this is why we need the government to remove the red tape and give us the drug so we can fulfil our lives, make more memories and be ‘normal’ adults.
“No 26-year-old should be planning their funeral. The amount of friends I have lost to this horrible illness has affected me extremely badly. I suffer depression and anxiety and I do get scared, not so much for myself but for my parents, brother, boyfriend and everyone who I would leave behind.”
Laura, who lives with her parents and is cared for by her mum, said she requires daily treatment and has been in and out of hospital most of her life.
She continued: “I was diagnosed with cystic fibrosis when I was two-days-old. I was born with a bowel obstruction and had to get emergency surgery to get most of my small bowel removed. They did tests and it came back I was positive for cystic fibrosis.
“I have to do physiotherapy two to three times daily to try and shift the mucus so it doesn’t cause chest infections or more damage to the lungs.
“I have severe problems with my gut, stomach and bowel. I have had two major operations on the bowel because of bowel obstruction.
“I got diagnosed with diabetes when I was 14 due to having cystic fibrosis and being on steroids.
“I went to Newfield Primary in Stonehouse, then went to Larkhall Academy, but I missed a lot of school because of hospital admissions. I am in hospital roughly every six to eight weeks for a two-week course of IV antibiotics.”
Laura is hopeful the government will soon strike a deal to offer Orkambi to cystic fibrosis suffers.
She added: “It would help a great deal as it would slow the decline in lung function and could possibly give us more years to live. I also wouldn’t need as much IV antibiotics and wouldn’t have so many exacerbations.
“Only five per cent of cystic fibrosis patients are over 40-years-old.
“Since 2013, there have been over 15 patients who have sadly passed away and not long ago, a patient passed away waiting to see if they could get Orkambi and the drug was only a couple of doors away.”
A Scottish Government spokesman said: “The Health Secretary has strongly encouraged Vertex Pharmaceuticals to enter into discussions with NHS National Procurement. Those talks are ongoing and we hope that Vertex will re-submit an application for Orkambi to the SMC at a price that is fair.”
A spokesman for Vertex added: “We share the CF community’s sense of urgency for access to Vertex medicines and are committed to working with the relevant Scottish health authorities to find a sustainable funding solution.”
No 26-year-old should be planning their funeral Laura Ewing