Parents from the South have joined others from across the country and lain down outside the Houses of Parliament to campaign for a life-changing drug for their children.
They've been battling for nearly three years for the drug that treats the causes of Cystic Fibrosis to be available on the NHS. So far, the Government has not been able to reach a deal on pricing with the manufacturers.
Some patients have been given Orkambi - on what's known as a 'compassionate' programme - with life-changing results. Kevin Ashford reports.
The Department of Health says "NHS England and NICE are doing everything they can to encourage Vertex to price their medicines responsibly".
The drug company, Vertex, say they are committed to working with the NHS to find a sustainable funding solution.