Cystic fibrosis drugs to help Scots patients

Hundreds of cystic fibrosis sufferers in Scotland will be able to get drugs which can help extend their life, after a deal on costs was reached.

Pharmaceutical firm Vertex International has reached a pricing agreement with the Scottish Government – and said as a result approximately 400 patients would be able to benefit from Orkambi and Symkevi.

The drugs will be made available for five years with a “confidential discount”.

It comes just a month after the Scottish Medicines Consortium (SMC) – the body which approves drugs for use by the NHS in Scotland – rejected the treatments, saying that the “cost in relation to its health benefits was not sufficient”.

The cost of Orkambi – reported as being £100,000 a year per patient – means in England the National Institute for Health and Care Excellence (Nice) has already deemed it not cost effective.

David Ramsden, chief executive of the Cystic Fibrosis Trust, hailed the access agreement in Scotland as a “landmark moment for the hundreds of people with cystic fibrosis and their families across Scotland who have tirelessly campaigned for years to access these drugs”.

He said: “This breakthrough is a victory for their perseverance. It means 350 eligible people living in Scotland will have access to drugs that stabilise their lung health.

“We celebrate the news in Scotland today, but our campaign must continue to focus on Vertex and all parties in England, Wales and Northern Ireland.

“Those in need of the drugs have already waited too long and we must ensure that thousands more people are not subjected to a postcode lottery.”

Orkambi is used to treat patients aged two and older while Symkevi treats those aged 12 and up and, while the drugs are not a cure for the disease, they can slow the decline in lung function, which is the main cause of death.