A CAMPAIGNING mother has claimed the NHS is “playing with her children’s lives” after refusing to fund a lifesaving drug.

Catherine Sheahan, from Hartley Wintney, is among hundreds of parents putting pressure on the government and the NHS to make the drug Orkambi readily available to people who suffer from cystic fibrosis (CF).

Pharmaceutical firm Vertex, which makes the drug, presented a deal to NHS England on July 4, which was refused.

Mrs Sheahan’s 15-year-old twins, Elizabeth and William, both have CF and the 46-year-old has called the decision made by the NHS “short sighted.”

Mrs Sheahan told the Gazette: “It feels like a smack in the face.

“Just when it seemed to be going in the right direction the NHS has gone back on what was presented to us as a good deal.

“They [the NHS] can’t seem to look beyond the figure of pricing put in front of them rather than looking at the long-term benefits this drug would have on people with CF rather than people dying waiting on transplant lists.”

As previously reported in the Gazette, 15-year-old Elizabeth gave an emotional speech outside Vertex’s office in London ahead of the meeting.

However, the NHS stated the deal was “unsupportable”.

A statement from the NHS read: “This country has a long established, internationally respected independent body NICE which recommends whether or not a drug company is proposing a fair price.

“NICE has been clear that Vertex’s pricing is unsupportable.

“If Vertex really believe they are offering a reasonable deal they should waive their confidentiality clause and let patients and taxpayers judge whether it is fair.”

Since the decision on Thursday last week, Vertex has written to Theresa May in a bid to get the government to back the proposal to make the Orkambi drug available to those who need it.