Hundreds of young lives are at stake
Scots with cystic fibrosis have only limited access to much-needed drugs through an appeal system which considers patients case-by-case.
However, many people are still falling through the net and being denied these drugs.
Limited access is not enough and is leading to hundreds of Scots becoming unnecessarily and irreversibly sicker.
Cystic fibrosis is a devastating and progressive genetic condition. The impact on people’s lives, and indeed their families, is considerable and worrying.
The Cystic
Fibrosis Trust remains fully committed to securing these vital drugs for everyone who can benefit.
We are told that the Scottish Health Minister Jeane Freeman has renewed her commitment to finding an urgent solution.
This comes after the Scottish Medicines Consortium decided that the price set by Vertex cannot be justified.
Who could fail to see how desperate families are as they see their loved ones go without essential drugs?
Families joined the Cystic Fibrosis Trust on Tuesday to hold a campaign rally at the company’s international headquarters in London.
Their patience is running out and feelings are strong after nearly four years of failing to secure the drugs for their loved ones.
The Scottish Government and Vertex Pharmaceuticals have suggested new discussions are at an advanced stage.
We can only hope for a breakthrough in talks.
With the lives of hundreds people in Scotland, and other parts of the UK, at stake, it cannot come soon enough.
We are talking about mostly young people who just want to live a normal, healthy life.
Nick Medhurst is policy and public affairs manager at the Cystic Fibrosis Trust