Scottish siblings in post code lottery “of life and death”


A SCOTTISH brother and sister fear a post code lottery could stop one of them receiving life-saving drugs.

Emma Mitchell and Nick Talbot both suffer from cystic fibrosis, a disease caused by a faulty gene that control movements of salt and water in and out of cells in the body.

Health authorities have already given Nick the go-ahead for home to receive a live-saving drug, Kalydeco, as he lives in London.

However, Emma has to wait until January next year to find out whether or not she can get the drug because she lives in Sanquhar in Dumfries and Galloway.

Kalydeco is claimed to be the nearest thing to a cure for the disease which shortens the lives of sufferers and costs £182,625 a year per patient.

Nick, 36, was diagnosed with cystic fibrosis when he was 12-years-old and Emma when she was just eight months old.

However, 35-year-old Emma suffers more attacks and infections than Nick but still might not receive the same treatment because of where she lives.

The siblings both suffer from the Celtic form of Cystic Fibrosis which can be treated by Kalydeco.

Nick said: “It’s heartbreaking that Emma is still waiting to know if she will get the drug.

“We both live in the UK and I always thought that the Scottish health system was the best in the UK.

“Yet Emma and other like her may not get access to something recognised as a life-saver across the border.

“What makes it even more poignant is that we suffer from the Celtic variation of CF, which will surely be more common among Scots.”

He added: “We worry about her being overwhelmed by an infection or her lungs failing under a serious one.”

Emma says she wants the same opportunity of life that her brother is going to get from the drug.

She said: “All I ask is that I get an equal opportunity to live and not have my life shortened by being denied access to the drug my brother Nick is getting.”

She added: “My main priority is persuading the Scottish Government to give me and others the chance to live by giving this amazing drug the go-ahead.

“If it is denied then I will have to consider moving to England where I know I will get it.”

Emma and her husband Fraser,37, have had to put much of their lives on hold because of the infections she gets.

Holidays have had to be cancelled at the last minute and Emma cannot have children because of the high risks involved.

She said: “We dared to go to Egypt and I left it ill a fortnight before to book.

“Even with preventative antibiotics I was floored by a sudden lung infection and we had to call off with just a couple days notice.”

Doctors believe that Kalydeco would give Emma and others a better chance of leading a normal life.

The drugs is one of the most expensive in the world and was developed by the US drug company Vertex with £75 million from US charity, The Cystic Fibrosis Foundation.

Without taking the drug, the average lifespan of a cystic fibrosis patient is 37-years-old.

A spokesman for the Scottish Medicines Consortium, said: “We will be making our announcement about the drug on January 14.

“Decisions are made on a balance of the cost and the benefit of patients.”