‘Lifesaving’ cystic fibrosis drugs to be free on NHS

© Microgen

Scotland first UK nation to offer Orkambi & Symkevi as deal between Scottish Government & manufacturer reached

Thursday 12th September 2019

Scots with cystic fibrosis are to get access to two potentially life-changing drugs on the NHS as a result of a deal between the Scottish Government and a pharmaceutical company.

Campaigners have described the move as a “landmark moment” that makes Scotland the first part of the UK to offer Orkambi and Symkevi to all NHS patients.

Around 400 of the 900 Scots living with the genetic disorder will be eligible for the drugs, which improve lung function, reduce the need for hospital visits and boost life expectancy. 

Earlier this month cystic fibrosis sufferer Shane Magill, who had been given advance access to the treatment, told BBC Radio Scotland it had led to an “amazing turnaround”.

He said: “I’ve been able to do things I would have never thought possible, this time last year.”

The deal announced today between the Scottish Government and manufacturer Vertex comes after drug approval body the Scottish Medicine Consortium (SMC) said last month it could not approve either medicine.

At the time the authority said there was “significant uncertainty around [the drugs’] overall health benefits in the long term in relation to their costs.”

But health secretary Jeane Freeman and Vertex have since hammered out an agreement that will see the drugs available for a five-year period while more evidence about their effectiveness is gathered for another submission to the SMC.

In a statement Ms Freeman said Vertex had offered a “confidential discount”.

The Carrick, Cumnock and Doon Valley MSP said: “This is fantastic news for those living in Scotland with cystic fibrosis and their families. This new pricing agreement with medicines manufacturer Vertex Pharmaceuticals, secured by the Scottish Government, will allow more people with cystic fibrosis to benefit from medicines Orkambi® and Symkevi® and live fuller lives for longer.

“The agreement has been reached after extensive discussions between the Scottish Government and Vertex Pharmaceuticals and means the medicines will now be made available to patients on the NHS in Scotland, subject to a confidential discount.”

David Ramsden of the Cystic Fibrosis Trust said: “This is 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.

“This breakthrough is a victory for their perseverance and enduring hope. It means 350 eligible people living in Scotland will have access to drugs that stabilise their lung health and reduce the need for hospital admissions.

“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. Scotland’s success must now be replicated across the UK without further damaging delay.”

Labour’s Jackie Bailie MSP, who has campaigned for access to the drugs, added: “Today’s decision wouldn’t be possible without the grit and determination of campaigners like Kelli Gallacher who have made the case for these drugs to be made available freely so powerfully.

“I also thank the health secretary for the interest and support she has given in this campaign since she took office.”