Cystic fibrosis families '˜tired' after talks on Orkambi continue to stall -1,000 days since it was made available in UK

TODAY marks 1,000 days since a life-changing drug for cystic fibrosis has been available in the UK but inaccessible to many who need it.

Wednesday, 15th August 2018, 9:31 am
Updated Sunday, 2nd September 2018, 10:06 pm
Gemma Weir and her four-year-old daughter Ivy at 10 Downing Street last month

Orkambi, produced by Vertex Pharmaceuticals, is not yet available on the NHS due to its price of £104,000 per patient per year.

Families of people with the condition, which causes a thick mucus to form on the lungs and digestive system, have been calling on NHS England and the company to come to an agreement to get it free.

At the moment, no decisions have been made despite several meetings between the two organisations.

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The Cystic Fibrosis Trust has today revealed 200 people who may have benefited from Orkambi have died since it was licensed for use in the UK.

Gemma Weir, from Paulsgrove, has been among the nationwide campaigns which saw protests in London and hundreds of letters sent to prime minister Theresa May calling for the drug to be free.

Along with fellow Paulsgrove mum Michelle Frank, their petition gathered more than 110,000 signatures to get the issue debated in parliament.

Gemma said: '˜It is daunting to think it has been 1,000 days since Orkambi was allowed over here.

'˜It is horrible to look back and think 200 people have died who were eligible for trying it.

'˜The past few months have been really difficult. We are all getting tired while waiting for Vertex and NHS England to come to a decision.

'˜We just want decisions to be made. In the middle of their stand-off around price there are the 200 people who have already died and the 10,000 people wanting Orkambi.'

As previously reported in The News, the idea for children to send heartfelt letters to Mrs May explaining why Orkambi was so important came from young cystic fibrosis sufferer Luis Walker.

Now his mum Christine is calling for children to write letters again, this time to Rebecca Hunt who is Vertex's vice president of corporate affairs.

MP Ian Austin, for Dudley North, has backed the Orkambi campaign and hosted the debate in parliament.

He said: '˜It is extremely disappointing that medicines such as Orkambi are still not available on the NHS, even though they have been available to patients the USA and several European nations for over two years.

'˜I've met people who have their lives changed by this drug and I've met many more who are desperate to be given it.

'˜It's crucial now the government and pharmaceutical companies come to a speedy and positive resolution.'