25th WHO Expert Committee on the Selection and Use of Essential Medicines

Geneva, 5th May 2025

This week, Vertex Save Us / Right to Breathe representatives and CF mums Ajsela Kushova and Gayle Pledger were at the World Health Organization (WHO) in Geneva to make a statement at the  25th WHO Expert Committee on the Selection and Use of Essential Medicines on why cystic fibrosis modulator drug, elexacaftor + tezacaftor + Ivacaftor (ETI) - also known to many as Kaftrio/Trikafta - should be included on their global ‘Essential Medicines List’ (EML). 

This follows a detailed 98-page EML application which was submitted to the WHO in October and includes supportive statements signed by 50+ human rights organisations/advocates & 35 national & international CF associations. 

In the case of CF drugs, inclusion on the EML would help create leverage for fairer pricing, unlock generic production and guide policy decisions in countries currently left behind. This could help thousands of patients that are denied access to these lifesaving drugs because of the extortionate price tag. 

Ajsela's son.

At the Expert Committee meeting, our statement  highlighted the transformative effects of ETI and Ajsela, from Albania, talked about how her family has moved to Italy to save her son (there are no CF modulators in Albania) but how she is only too aware of the families that are still suffering & she’s desperate to go home.  No family should have to move to another country to save their child. 

The Chair of the Expert Committee closed the meeting by acknowledging the importance of the EML and its role with regard to access to medicines, especially for rare diseases like CF. According to people that have attended this meeting before, this shows a positive shift in attitude. 

Medicines for rare diseases, like cystic fibrosis, are often overlooked so it will be a fantastic achievement if we are successful.  Two of the Expert Committee have already given positive opinions which is encouraging, but we won’t know the final outcome until the summer. We are all hoping for good news then! 

We want to recognise the whole EML Application working group whose contributions made this application possible. Thanks go to: Dr Cassandra Fairhead, Grace Hennessy, Ollie James, Ambar Noor Qavi, Lizzie O’Brien, Dr Andrea Perez Navarro, Gayle Pledger, Ben Young, Dr Jonathan Guo and Dr Andrew Hill. Watch & share our video from the event!