Campaigning mum says Orkambi drug firm and NHS England should stop ‘using families’ emotions for their own causes’ 

Gemma Weir and Michelle Frank. Picture: Habibur Rahman
Gemma Weir and Michelle Frank. Picture: Habibur Rahman

THE company behind a life-changing drug for people with cystic fibrosis has called for the prime minister to step in and resolve its cost issue. 

Vertex has met NHS England several times about the drug Orkambi but no agreement has been reached.

The National Institute for Health and Care Excellence (Nice) says the drug is too expensive for the NHS as it costs £104,000 a year per person.

Following their recent meeting, Vertex branded NHS England’s stance ‘outrageous’ while the health organisation said the firm should reveal what price it is offering.

Gemma Weir and Michelle Frank, from Paulsgrove, set up a petition calling for the issue of the drug’s availability to be debated in parliament.

Both have daughters with cystic fibrosis and have been leading the protests.

Gemma said: ‘I am disappointed by NHS England’s response although both they and Vertex are using families’ emotions for their own causes. We are meeting Vertex next week and it would be good to sit down with NHS England too for them to give proper answers. We are not letting up on our campaign.’

In their open letter to Theresa May, Vertex wrote: ‘I am writing to request your urgent intervention to ensure patient access to Vertex medicines. At PMQs on May 16, you made clear you wanted to see a swift resolution to these negotiations… we have made no progress.’

Vertex added in a statement: ‘We find it outrageous NHS England does not see a path forward.’

An NHS England statement said: ‘Nice have been clear that Vertex’s pricing is unsupportive. If Vertex believe they’re offering a reasonable deal they should waive their confidentiality clause and let patients and taxpayers judge if it is fair.’