Victory in the campaign for selexipag

Patient voices have helped secure the approval of a new drug designed to improve the lives of people affected by PH in Scotland.

Following months of campaigning and high-level talks with policy makers, it has been confirmed today, Monday 7 May 2018, that selexipag has been approved for use by the NHS in Scotland.

The Scottish Medicines Consortium (SMC) have made the announcement after rejecting the drug in July last year because evidence of the clinical and economic benefits was ‘not robust enough’.

Selexipag, also known as uptravi, helps to relax and widen the pulmonary arteries, relieving symptoms of pulmonary hypertension and slowing down progression of the disease. It is taken as a tablet, providing an alternative for the first time to drugs usually only available intravenously or by inhalation.

The PHA UK campaigned hard and in collaboration for the decision to be overturned, meeting with agencies and stakeholders and submitting key evidence in the form of the Living with PH survey.

The open letter we wrote expressing our dismay at the decision to reject the drug last July secured a national audience when it was printed in the influential Scottish newspaper the Sunday Herald.

Iain Armstrong, chair of the PHA UK, said: “This is a victory for everyone who shared their experiences in the Living with PH survey, as their voices provided undisputable proof that the symptom burden of PH has a major impact on quality of life. 

“The depth and insight that this evidence brought to the decision-making process was crucial in securing this turnaround. We’ve been told by decision-makers that it was enlightening and refreshing to see compelling, relevant evidence that harnessed the patient voice.

“This is a great example of how, when patients engage with our surveys, they are doing more than simply sharing their experiences. They are making a significant difference and contributing to tangible outcomes – and it’s vital that this continues.”

England and Wales have already reviewed selexipag once and said no, so the PHA UK is also working in collaboration with the National Institute of Clinical Excellence (NICE) and All Wales Medicines Strategy Group (AWMSG) to help them understand why funding the drug is so vital.

Iain added: “The approval of selexipag in Scotland is a step in the right direction but we want to see equality across the UK. Any decision to deny PH patients a drug that will improve their quality of life is grossly unfair and we won’t give up until we have the same equality and access to treatment as other disease areas like cancer.”

Keep an eye out for updates on the fight for access to selexipag in England and Wales.