Cystic fibrosis patient fears she will have to leave her island home

Hannah McDiarmid is calling for a medicine, the drug Orkambi, to be made available on the NHS. Picture: Cystic Fibrosis Trust/PA Wire
Hannah McDiarmid is calling for a medicine, the drug Orkambi, to be made available on the NHS. Picture: Cystic Fibrosis Trust/PA Wire
0
Have your say

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, currently 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 Tuesday evening.

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 life-shortening 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 is a precision medicine that 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.

West Scotland MSP Maurice Corry said: “It’s a drug that could have such a great impact on the patients that need it and the Scottish Government need to make sure it is available for patients on the NHS.”

A Scottish Government spokesman said: “Talks between Vertex Pharmaceuticals and NHS National Procurement are ongoing and we continue to encourage Vertex to submit a fresh application for Orkambi to the Scottish Medicines Consortium (SMC) at a price that is fair.

“Decisions made by the SMC are independent of Ministers and Parliament. However, we have significantly improved access to new medicines in recent years as a result of our investment and reforms.

“These include the introduction of a new system for doctors, on behalf of individual patients, to access licensed treatments not yet generally available on the NHS in Scotland.”