A South Hams mother who worries that time is running out for her daughter, who suffers from cystic fibrosis, is urging people to sign an e-petition to change the law on the drugs offered to CF sufferers on the NHS.

Cathy Meredith, whose daughter, Sarah, 26, has the condition has started a petition calling on the UK government to supply lifesaving drugs for cystic fibrosis sufferers as they do in 11 other EU countries.

The petition needs to collect 100,000 signatures. So far, more than 23,000 people have signed.

Cathy, who lives in Maudlin Road Totnes, said: "Cystic fibrosis is the UK’s most common fatal, inherited condition with over 10,400 sufferers. Half of those who died from cystic fibrosis last year were under 31 years old. My daughter Sarah is 26, so time is of the essence. I would urge anyone who is willing to support us in our fight for these lifesaving drugs to sign the petition as soon as possible."

Her call comes just a few weeks after another Totnes mum, Sarah Burgeon, launched a legal battle against NHS England to try to get the cystic fibrosis drug Orkambi for her daughter, Katie Stafford, who is six.

Cathy said: "It is three years since Orkambi was licensed in the EU and the next drug in the pipeline, Symkevi, has just been licensed. In the last three years hundreds of sufferers have died.

"Many European countries as well as Australia and the US already have access to these drugs. Yet people with cystic fibrosis still do not have access to this treatment in the UK.

"These precision medicines tackle the underlying genetic mutations that cause cystic fibrosis while current treatments only address the symptoms of the condition. They have been found to slow the decline in lung function – the most common cause of death for people with cystic fibrosis – by 42 per cent and reduce hospitalisation by up to 61 per cent."

The Government has blamed the high cost of the drugs for the lack of availability on the NHS.

In response to the petition, it said: "NICE (The National Institute for Health and Care Excellence) and NHS England are leading the dialogue with Vertex Pharmaceuticals around access to their portfolio of cystic fibrosis medicines. The Government fully supports the approach that NICE and NHS England are adopting.

"NICE was established nearly two decades ago to act as the authoritative, independent, expert body for assessing the clinical and cost effectiveness of new drug treatments in this country. It is internationally respected and central to decisions about which treatments can be reimbursed on the NHS.

"Whilst the Government understands the high level of interest in Orkambi, there is no justification for treating Vertex differently from the numerous other companies that engage with NICE, and the NICE appraisal process is both suitable and appropriate for evaluating the evidence Vertex have provided for their products.

"We were disappointed by Vertex’s decision not to price Orkambi fairly following the guidance published by NICE two years ago, and by their more recent decision to unilaterally withdraw entirely from the NICE appraisal of Symkevi.

"The final offer NHS England made to Vertex in July this year provided significant commercial flexibilities designed to assist the company in obtaining positive NICE recommendations across all existing licensed treatments and future pipeline products, with the intention of making them rapidly available to patients and in advance of any NICE appraisals concluding. These flexibilities were to complement the NICE appraisal process, not act as a substitute for it.

"We understand the frustration of the cystic fibrosis community, however, it has been made clear to Vertex that its drugs need to be priced responsibly and that any re-assessment of Orkambi’s effectiveness must be carried out via NICE’s established processes. Vertex must now re-engage with the NICE appraisal process."