Video report by ITV News Health Correspondent Emily Morgan
Calls for NHS access to potentially life-saving drugs are growing, one year to the day after Theresa May said she wants a “speedy resolution” for cystic fibrosis sufferers.
A young mum handed in a letter and roses to Downing Street on Thursday morning, to remind the prime minister of her commitment “for that to happen” a year ago.
Despite Theresa May’s support, NHS England, the National Institute for Health and Care Excellence (NICE) and pharmaceutical company Vertex still remain deadlocked in negotiations.
The Cystic Fibrosis Trust and Zoey Jones, mum of 12-month-old Eve, want to see the rollout of two new so-called “precision medicine” drugs, which treat the root cause of the condition.
Ms Jones, 37, delivered 65 roses – which is how some children pronounce cystic fibrosis – along with a letter from the charity inviting Theresa May to attend a Parliamentary Debate on June 10.
She said: “The distress caused to the community is incomprehensible, this cannot go on. We are begging the Government to secure a deal.”
Orkambi is one of the drugs which targets the root cause of the disease and would benefit around half of people with Cystic Fibrosis, according to the charity.
It has been licensed for use for more than three years, but a deal to make it available on the NHS for patients in England, Wales and Northern Ireland has still not been reached.
During that time, another drug to treat the root cause of the condition, Symkevi, has been approved for use but is also not available on the NHS.
David Ramsden, chief executive of the Cystic Fibrosis Trust, said: “Today marks a year since Theresa May said she was keen to see a ‘speedy resolution’ in the ongoing dialogue between NHS England and Vertex.
“Yet, the wait goes on. 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.
“Talks between the three parties – Vertex, NHS England and NICE – must result in action.
“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.
“The promise of words and ongoing talks is no longer enough, we need to see the drugs made available now.”
Why are negotiations still ongoing?
A disagreement between NHS England and US firm Vertex Pharmaceuticals over the price of the drug still shows no signs of being resolved more than two years after negotiations started.
The NHS has offered £500 million, over five years, for access to Orkambi and other cystic fibrosis drugs made by Vertex, with the promise of renewals in the future.
But this has been rejected by Boston-based Vertex, which has secured deals with other countries for access to Orkambi and has criticised the way new drugs are appraised in the UK.
Orkambi has a list price of £104,000 per patient, per year and the drug must be taken for life.
Vertex is understood to have offered to reduce this list price, though NICE has said the US company would need to drop the list price by 90% in order for it to be approved on the NHS.