Orkambi has been hailed as a ‘wonder drug’ that could extend the lives of people suffering from cystic fibrosis.
However, patients across the United Kingdom still do not have access to the drug one year after Theresa May made a promise to take action.
Orkambi received its European license more than three years ago, in which time more than 200 people have passed away from cystic fibrosis.
But the National Institute of Health and Care Excellence could not reach an agreement with the drug’s manufacturer.
The NHS England and Government-run body were in a deadlock with the United States company Vertex over Orkambi, which costs around £104,000 per patient per year.
One year after the Prime Minister’s promise, frantic campaigners rallied to 10 Downing Street and shared their resentments.
Theresa May replied yesterday by telling the companies to do “everything they can” to break the deadlock.
MailOnline has talked with three children with cystic fibrosis: 2-year-old Lorcan Maguire, 9-year-old Shiloh Howells, and 23-year-old Hannah Lindley.
Mrs. May said she also wanted a “speedy resolution” in the current negotiations so sufferers could get their hands on Orkambi and Symkevi, another drug that treats the underlying cause of CF but it’s not yet available on the NHS.
In December, Vertex had an agreement with Scotland for access to Symkevi and Orkambi. However, the fight for the drug is still occurring in Northern Ireland, England and Wales.
Chief executive of the Cystic Fibrosis Trust, David Ramsden, said: “This tragic situation cannot continue. Every day the health of thousands of people in this country is deteriorating – and this is damage to their lungs that can’t be undone.
“We’re asking for Prime Minister, Theresa May to attend the Westminster Hall debate on Monday 10 June and update the house on what the next steps are.”
23-year-old Hannah Lindley said cystic fibrosis has stolen her childhood and her best friend as she had to watch her sister die from the same condition.
“A lot of people mask it over which annoys me because it needs to take it seriously.
“It’s stolen my joy, health and mobility. It stole my childhood and my best friend – my sister. I had to watch her die.
“There are some days you feel better and there are others you question why you are on this planet.”
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