South Yorkshire patients denied 'life-changing' cystic fibrosis drug
Orkambi was made available in Scotland last month
Last updated 8th Oct 2019
It's claimed there's a 'postcode lottery' that's denying cystic fibrosis patients in South Yorkshire a 'lifeline' drug.
Last month the NHS in Scotland started offering Orkambi but it's still not available in England because NICE, who buy drugs for our health service, say it's so expensive that it's not cost effective.
Sufferers and their families argue it's had success elsewhere and can extend lives of those with the disorder by up to twenty years.
They're urging our government to come to a deal with the company who make it.
Sheffield parents Phil and Rachel Turner's 5 year old daughter Eliza has cystic fibrosis. They're seriously considering moving to Scotland to get access to the drug.
Rachel says it has a big impact on Eliza's life:
"I've had to give up work to care for Eliza full time. People overlook what a big deal it would be for her to have any more normality in her life, to have to do less treatments, to not have to take medication every time she eats, to not be on twenty tablets a day.
"We were really happy for everyone with cystic fibrosis in Scotland obviously because it's massive but it just highlighted how disappointing it is that a deal can be done but hasn't been here.
"On hearing that news you'd just do anything that you can to do the best for your child. And if that's where it's available we would seriously consider moving there."
Cystic fibrosis is a genetic disorder which mainly affects the lungs and makes lung infections more likely - it means catching even a cold could make Eliza seriously ill.
She's settled in a Sheffield school now with a care plan and her parents are worried about the upheaval on her life, as well as theirs, that moving to Scotland would cause.
Phil is urging the authorities here to come up with a deal like Scotland have:
"You would be giving a lifeline to adults and children who have basically got a life sentence on their back. It's 10,000 people here. That's 10,000 people who you're going to give 20 or 30 years extra life. Why are we not doing this?
"We're literally on the same island yet North of the border those patients are really going to see those significant benefits. Whereas just because of where we live, we're not going to find that."
Phil and Rachel have brought their problem to their MP Gill Furniss who pressed the government on it in the House of Commons last week.
She's told us she can't believe the drug isn't available here yet:
"They need to take a leaf out of Scotland's books. Because I just can't see why my constituents should have to go to the lengths of relocating hundreds of miles up the road just to get what Scotland can get. It's just not fair."
The government say they feel for families such as Phil and Rachel's and they too are frustrated a deal hasn't been reached to bring Orkambi to England.
NICE say the cost of the drug is 'much higher' than the level they usually consider cost-effective.
The body is still in negotiations with the company who make it, Vertex, to try and reach a deal but so far the negotiations have been unsuccessful.