Portsmouth mums welcome fresh talks in Orkambi drugs battle, but say urgent deal is needed

Leaders from NHS England met with Vertex Pharmaceuticals to thrash out a deal to provide drug Orkambi to thousands of people who have cystic fibrosis.

It comes after a six-month campaign spearheaded by Portsmouth mums Gemma Weir and Michelle Frank, which was backed by 114,000 people, to provide the drug on the NHS.

It is used to treat one of the root causes of cystic fibrosis, an illness both Gemma and Michelle’s daughters have battled with since birth.

Gemma said the latest development was ‘huge’ but said there was now the ‘utmost urgency’ needed to agree a deal.

The 34-year-old, of Portchester, said: ‘This is our children’s health, it’s their life expectancy and the time that we have got with them. You can’t put a price on that.’

Okambi is available as a drug in other countries but is only prescribed to patients in the UK on ‘compassionate’ grounds – where lung function has dropped below 30 per cent.

Recently, Ireland managed to agree a deal to provide the drug through its health system, but that took more than two years to thrash out.

Gemma wants NHS England and Vertex to agree something in six months. She added: ‘We have already waited two years – some people can’t wait any longer.’

Michelle said her daughter, Emma’s health had deteriorated significantly in the past few months, with more hospital treatments being needed.

She added NHS England and Vertex needed to agree a price sooner rather than later.

‘Every week we wait another person with CF dies,’ she said. ‘They need to think about the faces of these people, faces like my six-year-old daughter who has already got lung damage.

‘I’m fighting to make sure my daughter can reach her 30s and can have a better life. We will never back down.’