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Vertex under pressure at the European Cystic Fibrosis Conference from patients and clinicians

As part of the Right to Breathe campaign a group of patients and clinicians attended the annual European Cystic Fibrosis Conference in Vienna last week. They spoke about the urgent need for global access to lifesaving cystic fibrosis treatment and highlighted how Vertex’s exorbitant prices were a key barrier to making this a reality.

In the past Vertex have silenced criticism from some of the CF community by funding events like the European CF Conference, dividing our community and holding patients to ransom by tightly controlling access to these miracle drugs. We were there to break this silence and ensure Vertex, who were the conference’s ‘diamond sponsor’ were being challenged. This time they couldn’t avoid us.

The campaign delegation included Gayle, Rob and Urte - all parents of children with CF - who spoke passionately about the impact of Vertex Pharmaceuticals’ unaffordable pricing strategies and highlighted that more than 28,000 diagnosed patients don’t have access to life-saving CFTR modulators.

As a result, Vertex was put under enormous pressure and scrutiny. During the event thousands of leaflets, stickers and badges were distributed to participants and were visible throughout the conference centre with the words “Vertex Act Now, CF modulators for all”, accompanied by pictures of patients who don’t yet have access.

The Right to Breathe campaign held a packed meeting where parents and clinicians spoke

about the situation in their countries and Ukrainian IP lawyer, Olga Gurgula explained the legal options available to gain access to modulators, including the use of compulsory licences.

Vertex also faced increased scrutiny in the main sessions. Dr Marco Zampoli from Cape

Town, South Africa revealed new evidence from his patients. Some patients lucky enough to be able afford to individually import modulator drugs reduced to a half dose because of cost. Dr Zampoli found that those patients taking a half dose of Trikafta (Vertex’s newest

and most effective modulator treatment) in combination with a strong CYP3A inhibitor is as safe and effective as a full dose. This finding opens up the possibility of widespread patient solidarity tactics with patients who have access ‘saving’ their medication to share with those without.

Jonathan Guo, CF Researcher and final year medical student at Imperial College in London, presented on ‘International disparities in access to highly effective modulator therapies’. He was joined on stage by Urtė Gylienė who has a two year old daughter, Milda, with cystic fibrosis. She is from Lithuania where they currently have no access to CF modulators. One attendee said to us that his powerful intervention “was the best presentation at the conference, by far”.

In the same session, just before Jonathan’s presentation, Vertex gave 3 presentations which were followed by a number of critical questions from the audience and the session Chair Prof Jane Davies, who has been elected the next President of the European CF Society. The questions pushed Vertex to describe what they were doing to get their drugs to children in low and middle income countries and whether they had a global access plan.

Vertex representatives were unable to answer these questions. Prof Davies told the speakers that she expects Vertex representatives to be able to provide a response on these issues. An experienced CF clinician commented that this is “the first time in history” that a Chair of a conference has ever challenged Vertex.

Prof Bülent Karadag, Division of Paediatric Pulmonology at Marmara University in Istanbul, Turkey who attended the conference agreed that our presence at the Congress really mattered. He said:

“This congress was historically important. For the first time, the voice of patients who cannot have any access to modulators was heard in a meeting in the official programme. Most of the

physicians were so glad to hear the facts about global health inequity and supported the

ideas to correct it.”

The tide is turning against Vertex - and they know it. Patients and clinicians are united in their desire to see every patient, everywhere on these drugs. The Right to Breathe campaign will not stop until every cystic fibrosis patient has access to the lifesaving treatment they need!


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