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Cystic fibrosis mums confront Vertex at ECFC 2024

Last week the Right to Breathe campaign headed to Glasgow to amplify the call for global access to lifesaving treatment at the annual European Cystic Fibrosis Conference, which is attended by hundreds of clinicians from all around the world.

The event’s main sponsor is Vertex Pharmaceuticals - the drug company which is directly responsible for the sky high prices that are shutting patients out of access to their lifesaving CF drug Trikafta/Kaftrio. Despite their financial ties to the event, we did not let them leave Glasgow without hearing from CF families who are urging them to take action to save lives. 

Firstly, we occupied Vertex’s shiny exhibition space to publicly call out their immoral profiteering. Passers by stopped to hear from three CF mums - Gayle from the UK (one of the world’s richest countries where access has been secured) alongside Urtė from Lithuania and Jolene from South Africa, who both live in countries where access is being denied. They spoke about what it is like to see their young children get sicker by the day, knowing that there are drugs that could save their lives which Vertex has priced out of reach. You can watch more from this action on Facebook, Twitter/X and Instagram.

But we didn’t stop there. We also directly confronted Fredrick Van Goor, a Vertex scientist and executive with the power to save lives through pushing for global access. We challenged him over his lack of action and urged him to do more for CF families around the world.

On top of this, we also met with Vertex's Vice President of Patient and Community Engagement to express our frustration and anger that so many families are still waiting for access to Trikafta. We will of course be following up from this meeting to ensure that patients’ voices are not ignored.

As well as challenging Vertex, we engaged with hundreds of attendees and received widespread support for the campaign, with many wearing our stickers throughout the event. We finished with a presentation on the closing plenary from Dr Marco Zampoli - a Right to Breathe campaign advocate from South Africa - who boldly spoke out about pricing and access. Never before has such a platform been provided to raise the issue of lack of access to medicines at the European CF Conference. In response, the conference organisers (the European Cystic Fibrosis Society) acknowledged the need to look at the obstacles around access to modulators, including issues around pricing.

For years and years, Vertex Pharmaceuticals have gotten away with letting CF patients across the world die whilst raking in billions and covering themselves through sponsorship of events like the European CF Conference. Enough is enough. We know - and they know - that the tide is turning, and that they are facing increasing pressure to ensure access to every patient, everywhere. In solidarity with CF families around the world, we will not stop campaigning until this demand is secured.


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