Speaking up for Scottish patients

24th July 2017

Our open letter criticising the decision not to fund a new treatment for Scottish PAH patients has been published in an influential Sunday newspaper.

The letter, which refers to the Scottish Medicine Consortium’s (SMC) decision not to fund the drug selexipag, was written by members of the PHocus2021 steering group and signed by Dr Iain Armstrong, Chair of the Pulmonary Hypertension Association, and two consultants from the Scottish Pulmonary Vascular Unit at Glasgow’s Golden Jubilee National Hospital.

It was published in the Sunday Herald on 23rd July, shortly after the SMC announced that selexipag would not be made available to patients with PAH (pulmonary arterial hypertension) in Scotland.

The decision was made in relation to patients with functional class III PAH (moderate-severe) who are insufficiently controlled with dual oral combination therapy and who would otherwise be considered for treatment with inhaled iloprost.

The letter, in full below, calls on the Scottish Government to revisit the decision in order to help patients enjoy a better quality of life.

You can read the letter on the Sunday Herald website here

 


 

Dear Sir

We are a collaboration of patient representatives and doctors who are deeply disheartened by the Scottish Medicine Consortium’s (SMC) decision this week (10th July) 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 focussed 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.

Yours faithfully,

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