Wallingford parents have received a small boost in their bid to have a life-saving drug approved on the NHS.
Campaigners have been fighting to get a medicine called Orkambi available on the NHS which could slow the decline in lung function by half in cystic fibrosis patients.
Four-year-old Grace Bagley, who has CF, recently spent 16 consecutive days in hospital receiving IV treatment that might not have been necessary if Orkambi had been made available after NHS England’s review in March.
But manufacturers, Vertex, were encouraged by what they heard from secretary of state for public health and primary care, Steve Brine MP, and Lord O’Shaughnessy, secretary of state for health (Lords).
Grace’s mother, Zoe Bagley said: “It feels like we’re heading in the right direction but very slowly.
“I really do feel confident that it will happen, but it needs to happen quicker for the people that are waiting for it.”
During Grace’s stay in hospital, she had a long line inserted into a vein under sedation and had several blood tests, some waking her up through the night.
“She was terrified by some of the things being done and if she had Orkambi we could be sparing her those experiences.”
Grace was eventually discharged from hospital on April 24, the day before her fourth birthday.
A Vertex spokesperson said the company is “pleased that the government is in agreement that we urgently need to find a solution”.
Vertex met NHS England on Wednesday last week to start a “meaningful dialogue”, later adding that the company “had a very constructive meeting”.
“Both parties recognise there is still some way to go to reach an agreement and Vertex is committed to working together to achieve this.”
“We share the cystic fibrosis community’s sense of urgency and have agreed to meet again in the coming weeks. There’s lots of work to do on both sides ahead of this to progress discussions as quickly as possible.”
A spokesperson for NHS England said: “We are not yet in a position to comment or update further on the discussions.”