Assembly urged to fund NHS drugs
Tuesday 3rd September 2013, 5:30PM BST.
More than a dozen charities and organisations are challenging the Welsh Assembly to back breakthrough drugs with NHS cash.
Thirteen charities and organisations have signed an open letter pressing for vital medical funding in Wales for drugs which improve quality of life.
The Cystic Fibrosis Trust (CFT) is leading an alliance of the like-minded to argue funding should not be restricted only to drugs that prolong people’s lives.
It has the backing of organisations such as the Royal College of Nursing and the British Lung Foundation Wales.
The letter has been sent to Mark Drakeford AM, the Wales minister of health and social services, urging him to ensure new drugs that improve quality of life for Welsh patients get NHS funding.
It comes as a review in Wales of the process for appraising medicines which are only beneficial for a very small number of people is at a key stage.
The review was launched in May by the health minister following a campaign to get the cystic fibrosis medicine Kalydeco to Welsh sufferers of the condition.
Medicine which benefits only a small number of people is described as orphan or ultra orphan. In Wales up to 19 people beneift from Kalydeco.
The CFT is taking an active part in the on-going review in the run up to a decision being made in October.
In the letter Ed Owen, chief executive of CFT said: “We believe that there should be a distinct appraisal process for orphan and ultra orphan medications so that those with rare illnesses can access medications fairly.
“The Kalydeco issue, which was resolved satisfactorily by the Welsh Government, showed the inadequacy of the current process.
“Ultra orphan medications benefit a small cohort of patients, but the quality of life improvement as well as the potential increase in length of life experienced by patients must be taken into account by the appraisal process.
“The NHS in Wales should support drugs that improve quality of life and not just those that are proven to prolong life.”
The alliance of charities and organisations also recommend that the appraisal process takes account of evidence from patient experiences with new medicines.
A Welsh Government spokesman said: “The Health Minister recently established a group to review the appraisal of orphan and ultra-orphan medicines in Wales.
“This group is examining a range of issues including the current appraisal process, methods for calculating cost-effectiveness, and equity of access to orphan and ultra-orphan medicines. It is expected the review group will report back to the minister in October.”