The family of a young girl living with cystic fibrosis say they remain hopeful there will be a positive outcome around making a new drug available on the NHS.
Four-year-old Harriet Corr relies on a daily cocktail of medication and intense physiotherapy to keep her alive.
This is a revolutionary drug which can help so many people with CF which is being denied to themEmma Corr
However, that could change if Orkambi - a drug which corrects faults in the lungs on a cellular level rather than just treating the symptoms of cystic fibrosis - is made available on the NHS.
Following a recent meeting between Secretary for State Matt Hancock, Vertex chief executive officer Jeff Leiden, NICE and the NHS, with another scheduled for next week, her parents Chris and Emma hope their daughter could be one step closer to being given access to the drug she desperately needs.
Emma said: “We do feel a bit more positive. But how many meetings are they going to have?
“We are hoping the meeting will be sooner rather than later and a decision is made, as time is something CF patients don’t have on their side.
“Even if the meeting gets us interim access to the drug, then they can go on and continue their talks behind closed doors.
“This is a revolutionary drug which can help so many people with CF which is being denied to them.”
Jarrow MP Stephen Hepburn, who is supporting the family, said: “I welcome the Health and Social Care Committee inquiry around the availability of Orkambi and other cystic fibrosis medicines on the NHS.
“The government must do all that it can to ensure that NICE, NHS England and Vertex can move talks forward and agree a deal that will enable access to these vital new medicines as soon as possible.”
Rebecca Hunt, corporate affairs international from Vertex Pharmaceuticals said: “We are committed to working with all parties to make our potentially life-changing medicines available to people living with cystic fibrosis in England as quickly as possible.
“To this end, Vertex, NHS England and NICE have agreed to meet again next week to continue discussions.”
Anyone who would like to sign a petition calling for the drug to be made available on the NHS can do so by visiting petition.parliament.uk/petitions/231602