Cystic fibrosis patient backs call for new drug on NHS
A CYSTIC fibrosis patient is calling for a medicine to be made available on the NHS as she fears she may otherwise have to leave her island home.
Hannah Mcdiarmid, 23, who lives on Skye, has to make a three-hour each way trip to Raigmore Hospital in Inverness every other month for treatment.
When she develops an infection, a frequent hazard for those with cystic fibrosis, she stays there as an inpatient for a fortnight at a time while she undergoes intensive IV antibiotic treatment. She is considering moving from the island where her family has lived for six generations as the long journeys are taking their toll.
However she believes if the drug Orkambi were available on the NHS it could benefit fellow sufferers across Scotland and save her from having to move.
She is backing Cystic Fibrosis Trust’s campaign for better access to medicines ahead of a debate in the Scottish Parliament on tonight.
Ms Mcdiarmid said: “I love Skye and one part of my family has always lived here.
“I studied Gaelic on the island and work part-time here at the archive centre and at Visit Scotland as the area is so important to me, but the journey is such a strain on us all.
“Medical research is really changing the way cystic fibrosis can now be treated and there is a medicine called Orkambi that could potentially help me.
“I just wish this was available on the NHS as it could make my life easier and could potentially mean I could remain on Skye with my family rather than have to live closer to the hospital.”
Cystic fibrosis is a debilitating lifeshortening illness that creates a build-up of thick, sticky mucus that causes chronic lung infections and progressive lung damage.
Ms Mcdiarmid, who was diagnosed with the condition when she was 17 weeks old, has previously undergone operations for polyps in her nose, suffers stomach problems, has chronic fatigue and most recently has been coughing up blood due to haemoptysis.
The Cystic Fibrosis Trust said Orkambi could benefit more than 330 people in Scotland.
The trust said while Orkambi is not a cure, it has been found to slow decline in lung function – the most common cause of death for people with cystic fibrosis.