Access to new medicines needs to improve, say MSPs
A committee of MSPs has called for "significant improvements" to the way patients access new medicines.
Holyrood's health committee said it "remained concerned" that despite recommendations to make the system better, very little had been done.
Members said the process needed to be trusted by the public.
At present, the Scottish Medicines Consortium (SMC) provides advice to NHS boards about the clinical and cost-effectiveness of all new drugs.
The committee urged the Scottish government to review previous decisions made in relation to individual patient treatment requests (IPTR).
It said the "central difficulty" of the IPTR system was the requirement for patients to prove exceptional circumstances - particularly with "orphan and ultra-orphan conditions".
The committee report said: "It is believed that, in its current form, this approach acts as a barrier to accessing drugs clinicians believe their patients need."
It added: "The Scottish government must outline steps it plans to take that will improve the process."
Health Secretary Alex Neil said access to new medicines was a "complicated and important issue" and further improvements to the system must be taken "after very careful consideration".
The minister added that he would be meeting UK minister Earl Howe to seek greater clarification from Westminster on its new drug pricing structure.
Mr Neil said: "We will be taking the committee's recommendations, along with those from the recent independent reviews, and will be consulting over the summer."
In November last year, Mr Neil asked two experts - Prof Philip Routledge, professor of clinical pharmacology in Cardiff University, and Prof Charles Swainson, the former medical director of NHS Lothian - to look at how the new medicines system operated.
The pair made a number of recommendations including letting patients and health professionals observe the appraisal process.
Health committee convener Duncan McNeil said: "This [new medicines] has always been a contentious issue and let's be clear that there are no easy answers or quick fixes.
"However, the reviews set up by the Scottish government to come up with suggestions to improve the system have done little to address the barriers that currently exist.
"The committee believes that the recommendations outlined in this report have the potential to create a better and more transparent system for patients to access new medicines."
Scottish Labour's Neil Findlay said the system as it stood was not "fit for purpose".
He added: "It can't be right that some patients get drugs after their story appears in the press, or if Labour MSPs raise it in parliament, or that others consider moving to England to access drugs to improve the quality of their lives."
The committee made a number of recommendations including;
- The Scottish government "must" outline the steps it plans to take to improve the Individual Patient Treatment Request (IPTR) system.
- The government should review previous IPTR decisions and "improve the monitoring of applications"
- The SMC and Scottish government should review "as a matter of priority" the rules around orphan and ultra-orphan conditions.
- The government is called on to "urgently investigate" and to report back to the committee on whether there is a decline in the number of phase three clinical trials in Scotland and to consider any steps that may be needed to increase their number as well as maximising the overall number of clinical trials.