The Scottish Government has again promised to double the amount of money to fund treatments for rare or end-of-life conditions, increasing that available through its New Medicines Fund from £40 million to £80 million in 2015/16.

The Fund was initially set up with a £20 million cash pot for 2013/14 to replace Rare Conditions Medicines Fund and better support health boards in funding the cost of orphan, ultra-orphan and end-of-life drugs for patients.

Scotland’s Health Secretary Shona Robison said the NMF - which comes from the nation’s health budget but is essentially financed by the rebate made to the Scottish government by the pharmaceutical industry under the Pharmaceutical Price Regulation Scheme (PPRs) - has helped give patients access to some of the most-advanced treatments and therapies.

“This Government, working with the Scottish Parliament’s Health and Sport Committee, has radically overhauled access to treatments for people with rare and end-of-life conditions, and the New Medicines Fund has been key to removing a potential barrier to accessing expensive new drugs,” she said.

Reassuring for patients

Welcoming the additional funding, Yvonne Hughes, Public Affairs Officer for the Cystic Fibrosis Trust, said it “will put at rest the minds of patients who were unsure of the future of the fund and, not only that, take comfort that the Scottish Government have paid attention and continue to support small patient populations, and those at end of life to receive drugs that really do make life-changing or life-extending improvements.”

Vertex’ Kalydeco (Ivacaftor), that treats one in 20 patients with cystic fibrosis, is one such drug already available through the NMF. The announcement should not only provide reassurance for those who already gain access to the “transformative treatment”, but it also bodes well for access to future genetic medicines, such as Orkambi (ivacaftor/lumacaftor), which is expected to receive European approval later this year to treat up to half of the CF population, the charity noted.