All your fundraising news from the last few months

Standing up for the PH community At the PHA UK we’re committed to fighting your corner, and we’re not afraid to hold organisations to account if we have reason to believe they are not acting in your best interests.

When we discovered that the Stayveer® brand of bosentan will be withdrawn from the UK clinical market, we challenged the decision on your behalf.

We wrote to manufacturers Actelion (part of the Janssen Pharmaceutical Companies of Johnson & Johnson) who cited ‘commercial reasons’ for discontinuing supply of the pulmonary hypertension drug from December 2019.

We made clear our disappointment that, as a patient organisation, we were not consulted on the matter. If we had been made aware, we would have told them that the continuity of supply of Stayveer® has been of great value to patients transitioning from Tracleer® bosentan, and that there are a significant number of patients still very stable and doing well on the drug.

We have also learnt that the decision to withdraw was not discussed with specialist centres.

Following an unsatisfactory reply to our letter, we requested a telephone conference with senior representatives from Actelion, where we expressed our view that they are putting profits ahead of patients.

Iain Armstrong, Chair of the PHA UK said: “It would appear from our communications with Actelion that the decision has been made because the drug does not carry enough profit, so efforts are being concentrated on different therapies. This is disappointing and contradictory coming from an organisation that has historically demonstrated commitment to patients. For many years, we have worked in collaboration with this organisation; most recently to help secure access to a new treatment for patients in the UK. I’m therefore also extremely disappointed they chose not to consult with ourselves, or the specialist centres, about the decision to withdraw Stayveer®.” Although we were unable to reverse Actelion’s decision to withdraw Stayveer®, we have succeeded in helping them understand the potential consequences to patients – and the benefits of consulting with us over future decisions.

We gave Actelion the opportunity to talk directly to patients via this magazine.

Jennifer Lee, Director of Access and Advocacy, said: “The well-being of patients is our first priority at Actelion. We recognise that for some patients the decision to withdraw Stayveer®(bosentan) will be distressing and we do not take such decisions lightly. Patients and clinicians should be assured that there are currently several alternative treatment options available. Actelion remains committed to continuing our work with the UK pulmonary hypertension community and to improving the lives of people affected by PAH.”

Please be assured that if you are currently taking Stayveer®, your specialist centre will work with you to safely transition you onto a different brand before supplies of Stayveer® come to an end. We have been reassured by Actelion that there is a ‘significant’ remaining stock of Stayveer® so we urge you not to panic. . If you have any concerns about switching between different bosentan brands, please contact your specialist centre.