A group of health charities and organisations has called on Health Secretary Alex Neil to ensure the quality of life that treatments can give is taken into consideration.
• Charities warn of risk that only life-saving drugs will be approved for NHS use
• 13 groups call for treatments which improve quality of life is taken into consideration
Ed Owen, the chief executive of the Cystic Fibrosis Trust, said in a letter to Mr Neil that future new treatments could emerge that would “substantially improve peoples’ lives”.
But he added: “The real risk is that these new and future treatments may be put beyond reach by decisions that the Scottish Government will make in the coming weeks.”
The letter demanded that “NHS Scotland should allow access to treatments for people that both prolong life and improve its quality” as it urged ministers to “seize this opportunity now”.
The alliance of 13 health organisations made the plea after two independent expert reports examining the controversial issue of access to new drugs were published earlier this month.
Mr Neil had commissioned Professor Philip Routledge to consider the way decisions are made by the Scottish Medicines Consortium (SMC) - the body which approves treatments for the NHS in Scotland.
The Health Secretary also tasked Professor Charles Swainson with looking at the Individual Patient Treatment Request (IPTR) system which patients can use to try to get drugs not yet approved by the SMC.
In their letter to Mr Neil, the health campaigners called on the Scottish Government to “consider innovative approaches of how the views of Scottish society can be taken into account” when making decisions about which treatments should be available on the NHS, adding that “greater emphasis needs to be placed on ensuring priority setting is in line with public opinion”.
Their letter also raised concerns that the reviews “note the deficiencies” of the methodology currently used to assess if treatments are a good use of public money, but that their “recommendation is to maintain the use of this measure when appraising new drugs without explicitly calling for more research into alternative systems to assess cost effectiveness”.
The letter has been signed by Alistair Kent, the director of Genetic Alliance UK, John Eden, the chief executive of the Scottish Huntington’s Association, Patricia Osborne, the chief executive of the Brittle Bone Society, Marion Ferguson, the chair of the Ivacaftor Patient Interest Group, and others.
In January, the SMC decided not to recommend cystic fibrosis drug Kalydeco for use on the NHS, although the drug, which is also known as ivacaftor, was made available on the NHS in England.
At the same time, Mr Neil announced a £21 million fund to help improve access to treatment for people with rare medical conditions - an interim recommendation from the reviews.
It was also recommended that the SMC meets in public so patients and others can see how the system operates, and that it should set up a ‘’citizen’s jury’’ to hear public opinion on the availability of new medicines.