"It is appalling that people with cystic fibrosis in Wales are being denied a potentially life-changing treatment freely available to those in England, Scotland and Northern Ireland. The Trust is now urging people in Wales to write to their Assembly Member to ask them to make a plea to the Health Minister not to accept this recommendation.
"This situation is causing considerable heartache and agony for families affected in Wales. We cannot have a situation where patients in Wales are treated as second class citizens. Many patients in Wales attend specialist clinics in Liverpool, and Manchester, to see people living in England accessing this medicine and not be able to have it themselves is completely unacceptable."
More top news
No more tolls will be charged from 17 December on the M4 and M48 Severn bridges.
We've seen the worst of the wet and windy weather, with sunshine and some showers on the way tomorrow.
Yellow weather warnings remain in place across Wales, expect a wet and windy day.