Scotland approves Orkambi!
Campaigner Emily, whose son Jack has cystic fibrosis, reacts to the Scottish announcement.
Fantastic news for Scottish patients as we learned today that Orkambi and Symkevi will be funded and made routinely available by NHS Scotland, as they are in Ireland and indeed 17 countries around the world. This is overdue news and sadly comes too late for many, but is reward for all those who have been campaigning extremely hard to obtain access to these life changing drugs, and we are grateful to all parties who have made it happen.
The rest of the UK must now find a way to treat patients; as the current situation represents one of the starkest examples we have ever seen of health inequality between the Home Nations.
We know that negotiations with Vertex have been difficult, and with ten times the number of patients in England as there are in Scotland - and therefore potentially ten times the budget impact - it may not be the case that the Scottish deal can be replicated elsewhere, particularly when Vertex have not submitted their data to the other nations.
However, we cannot accept that the Westminster government do nothing, and today we demand that they act. With details of the Scottish deal soon to be shared with counterparts in NHS England, Wales and Northern Ireland, it will be abundantly clear whether or not a deal with Vertex is achievable for the other nations.
If it is not, this must not mean that patients go untreated. There is another way. High quality, regulated generic drugs exist in Argentina and patients there have been treated successfully for two years. If a deal with Vertex is impossible the government must step in, and step in now, to extend access to these generics to all patients in need. The government’s previous statement that they have a “moral obligation” to explore all options must now be carried through. Whether through a large scale clinical trial, Crown Use Licensing, or personal budget payments, access must be made available to all, because no access is not an option.