Northerner
Admin (Retired)
- Relationship to Diabetes
- Type 1
It is a year on from the delivery of more than 1,000 letters to Downing Street, many of them from children, pleading for access to a cystic fibrosis drug, called Orkambi. But there is still no decision on whether it will be made available on the NHS.
At the time, in May 2018, Prime Minister Theresa May said there was an ongoing dialogue with the drug company Vertex and she hoped for a "speedy resolution to the negotiations".
Yet, despite months of talks, no agreement has yet been reached.
More than 10,000 people in the UK have the debilitating genetic lung condition cystic fibrosis.
For about half of them, a drug called Orkambi could make a big difference - but the NHS says it is too expensive to fund.
https://www.bbc.co.uk/news/health-48231909
At the time, in May 2018, Prime Minister Theresa May said there was an ongoing dialogue with the drug company Vertex and she hoped for a "speedy resolution to the negotiations".
Yet, despite months of talks, no agreement has yet been reached.
More than 10,000 people in the UK have the debilitating genetic lung condition cystic fibrosis.
For about half of them, a drug called Orkambi could make a big difference - but the NHS says it is too expensive to fund.
https://www.bbc.co.uk/news/health-48231909
