We are a collaboration of patient representatives and doctors who are deeply disheartened by the Scottish Medicine Consortium’s (SMC) recent decision not to fund a new treatment – selexipag – for pulmonary arterial hypertension, otherwise known as PAH.

This rare but debilitating and terminal condition affects around 50 new patients in Scotland each year. It is a condition that impacts every aspect of a person’s life – their physical, social, emotional and psychological wellbeing. There is currently no cure for PAH and untreated patients have a poor prognosis. It is a disease that affects all ages, but is more common amongst younger women, often in the prime of their life.

Patients with PAH do not often ask for more. Indeed, it is an area where significant financial savings have been freed up for the NHS through use of drugs that are now less expensive. The SMC’s decision did not hinge on the safety, effectiveness, affordability, or price of the drug. Rather, they focused on the lack of available data for an older, unrelated medicine that the SMC was comparing it against.

This week a small number of PAH patients had asked for a little more: to have some of the burden of living with this terrible condition reduced, the chance of a life that would be a little more normal, and to be able to engage in those day-to-day activities that most of us take for granted. The SMC has denied them this and we ask that it, and the Government, urgently revisit this decision and make selexipag available so that these patients do not lose out.

Dr Iain Armstrong

Chair, Pulmonary Hypertension Association (PHA UK)

Chapeltown, Sheffield

Dr Martin Johnson

Consultant Physician, Scottish Pulmonary Vascular Unit

Golden Jubilee National Hospital, Glasgow

Dr Colin Church

Consultant, Scottish Pulmonary Vascular Unit

Golden Jubilee National Hospital, Glasgow