Exposing the truth about Vertex Pharma at the European Cystic Fibrosis Conference 2025

At many major cystic fibrosis conferences including in Vienna, Glasgow, Phoenix, Boston, and now Milan - Vertex Pharmaceuticals takes centre stage to promote their image. But away from the spotlight there are thousands of desperate families still locked out of accessing lifesaving medicine, Trikafta, simply because Vertex prioritises profit over lives.

From 4th-7th June, Right to Breathe representatives - Gayle (UK), Urte (Lithuania) and Ajsela (Albania) - attended the European Cystic Fibrosis Conference (ECFC) in Milan. We went to do what we always do - bring the voices that Vertex desperately wants to ignore and silence. Here are some of the key moments…. 

Vertex’s “community meeting” - but not for this community:

During the conference, Vertex invited CF community members to engage with them at a nearby hotel to ‘hear from the community about their priorities’, but when these three CF mums arrived to ask critical questions about global access to Vertex medicines, they were barred from the “community meeting”. Vertex chose who could speak, silencing the voices they fear most and the questions they refuse to answer.

Watch the interaction here!

A memorial for lost CF children What Vertex tried to prevent in their meeting, we created on the conference floor.

Inside the conference exhibition hall, alongside many clinicians and global allies, we staged a powerful memorial at Vertex’s stand - a white wreath and roses were laid in remembrance of children who have died waiting for Trikafta. Tragically, many of these families made huge efforts to get access without success. These are broken families and lives that could have been saved if they weren’t held hostage by a company that cares more about profit margins than lives.While Vertex's glossy displays promoted their latest innovations, our memorial reminded everyone present of the human cost of their greed. Clinicians and allies joined us, standing in solidarity with families who continue fighting for healthcare equity.

Watch video of memorial

Desperate actions to save their child

On 5th June, at the end of researcher Benedict Young’s presentation highlighting the huge delays in accessing Trikafta in poorer countries across Europe, Ajsela was invited to share her story. In an emotional and powerful speech, Ajsela told how she has been forced to move to Italy with her son to access treatment, leaving her devastated daughter and husband behind in Albania. Her heart-breaking story highlights the unbearable choices Vertex forces on families to save their children’s lives.

Conference stall This year, we also secured our first stall in a CF conference exhibition hall. Here, we met clinicians, advocates, and families who stand with us, united in disbelief, outrage and our demand for justice. We were moved and encouraged by so many supportive comments expressing the importance of our presence in this space. Despite Vertex’s ongoing attempts to silence us, our movement is growing stronger.

We left Milan exactly as we arrived - determined, united, and absolutely clear about our mission. We will continue standing for those who can't speak out for themselves because until every patient, everywhere has access to lifesaving treatment, our work is far from over.