Portsmouth mum calls for ministers to step in and end Orkambi deadlock

MINISTERS need to step in and help end the '˜negotiation deadlock' over Orkambi.

Tuesday, 24th July 2018, 6:42 pm
Updated Tuesday, 24th July 2018, 6:52 pm

That is the message from campaigning parents who are looking to make the cystic fibrosis drug free on the NHS.

Vertex Pharmaceuticals, which produces the life-changing drug, and NHS England have held several meetings over the past few months but are yet to come to an agreement on the cost of the treatment.

Now, those in the cystic fibrosis community are urging MPs and health ministers to get involved and help resolve the negotiations.

Sign up to our daily newsletter

The i newsletter cut through the noise

Gemma Weir, from Paulsgrove in Portsmouth, met with Vertex last Friday. She and close friend Michelle Frank have been at the forefront of the campaign to get Orkambi free on the NHS. 

Both have daughters, aged four and six, with the condition which causes a thick, sticky mucus to form on the lungs and digestive system.

They organised a petition to get the matter discussed in parliament and have organised protests in London.

Gemma said: '˜The meeting with Vertex was positive and we were pleased to hear that Vertex don't want these negotiations to be over.

'˜They are very keen to get back in a room with NHS England and to get their chief executive involved in the talks.

'˜We are concerned that negotiations are at deadlock. It is a long time we have been trying to get access to Orkambi.

'˜We are now lobbying our MPs to get ministers involved to mediate the situation.'

As previously reported in The News, Vertex has written a letter to prime minister Theresa May calling for her to get involved.

It comes after the company and NHS England are yet to agree on a cost for the drug. At the moment, it is £104,000 per patient per year and is recommended by the National Institute for Health and Care Excellence (Nice) as being too expensive to be free on the NHS.

Following its recent meeting, Vertex branded NHS England's stance '˜outrageous' while the health organisation said the firm should reveal to the public what price it is offering.

Orkambi, for children aged six and above, helps treat the under-lying problems of cystic fibrosis and while it does not cure the condition, it does stop it from getting any worse.

Gemma added: '˜Both Vertex and NHS England won't budge on what they are offering.

'˜We really need the ministers to step in now and help us.

'˜It is a concern to us that parliament will be heading off to summer recess and it will be another six weeks before we can get them involved.'

Portsmouth South Labour MP Stephen Morgan wrote to the recently-appointed health secretary Matt Hancock calling for his intervention. In his letter he said people with cystic fibrosis and their families were being '˜reduced to bargaining chips' and '˜are suffering from the impasse'.

Gemma said: '˜Stephen has been really supportive which is great. He has been at the debates and cross-party meetings and is lobbying to try and make a change.'