Making patient voices heard in the debate around Selexipag

PHocus2021 has been working hard to make patient voices heard in the drive for a newly licensed treatment to be made available to people with pulmonary hypertension (PH).

Selexipag helps to relax and widen the pulmonary arteries, relieving symptoms of PH 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. Selexipag, also known as uptravi, has been licensed for use. However, the health agencies in England, Scotland and Wales – who are tasked by the devolved governments to recommend whether to fund newly-licensed drugs through the NHS – are yet to decide whether it will be made available. England and Wales have already reviewed this drug once and said no. This is being very strongly challenged and new processes have been restarted.

Part of the decision-making process involves the agencies consulting with clinicians and patient representatives, so PHocus2021 is working in collaboration to ensure the patient voice is heard loud and clear. It is essential that in making their decisions about whether to fund access to a treatment, these agencies understand what it is like to live with PH, and what impact a new treatment may have on patients’ lives.

We’ve been submitting evidence, including the results of the recent Living with PH survey, responding to questionnaires and fighting to represent the PH community at agency meetings. We’ve had to be assertive, and it’s not been easy at times, but we will continue until we get the outcome that patients and their kinship want and need.

In July, our open letter criticising the decision not to fund the drug in Scotland was published in influential newspaper The Sunday Herald. The Scottish Medicines Consortium are now reconsidering, and we are 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 Selexipag is so vital.

Iain Armstrong, chair of the Pulmonary Hypertension Association (PHA UK) and co-chair of PHocus2021 said: “As a PH community we don’t ask for much; we just want the same equality and access to treatment as other disease areas like cancer. Selexipag is an important new drug and we know it is no more expensive than other alternatives. PH patients need access to the right treatment, at the right time. But despite the rhetoric of ‘public engagement’, even as a large patient organisation we have had to battle hard at times to even be invited to negotiations about its future. Making patient voices heard in this debate is as much of an issue as access to the drug itself.

“PH patients may be breathless but they’re not voiceless, and we’re working tirelessly to make them heard. The bigger our voice, and the more collaboratively we work, the better the outcome will be – for access to treatments, and much more besides.”

Watch this space!

Find out more about the aims of PHocus2021, including our drive to ensure equity of access to evidence-based treatments, here.