Why we changed our name
We don't need Vertex to save us.
When a group of UK parents set up Vertex Save Us in 2020, the name said exactly what we wanted. At the time, Vertex Pharmaceuticals controlled access to the only medicines that could transform the lives of cystic fibrosis patients, and we wanted those medicines to be available to everyone.
Six years on, the picture is different. We have helped to deliver a generic version of the same treatment at a fraction of Vertex's price, and the first patients collected it in June 2026. Patients are importing it legally with advice from the CF Buyers Club. And governments are being pressed to act by campaigners in countries around the world who came together under our banner.
We are no longer asking one company to rescue us. We are building the alternatives ourselves, with people all over the world. A name that puts a pharmaceutical company front and centre no longer describes who we are. CF Global does.
Everything else stays the same, including our aim: cystic fibrosis modulators for every patient, everywhere.
The problem
Most people with cystic fibrosis are still waiting.
CFTR modulators such as Trikafta treat the underlying cause of cystic fibrosis rather than the symptoms. For people who can access them, they can dramatically improve lung function, reduce exacerbations and improve quality of life, with the potential to prevent or delay long-term complications and premature death. Yet access remains profoundly unequal. In wealthy countries these treatments are standard care, whilst in many low- and middle-income countries there is no access and life expectancy is still under 20 years.
Vertex Pharmaceuticals holds key patents on these medicines, sets their list prices, and has not registered them in many countries, including those with significant CF populations such as India and South Africa.
It doesn't have to be this way. A generic version, Triko, produced in Bangladesh, now costs $6,375 a year for a child and $12,750 for an adult, 96% less than Vertex's list price. Fifty-eight children can be treated for the cost of treating one child with the branded version.
The existence of a generic does more than provide an alternative for the people who can access it. It creates a credible alternative to Vertex's monopoly. When governments have another source of the medicine, they have leverage to demand lower prices and better access. An affordable generic can change the balance of power.
In 2025, the World Health Organization listed CFTR modulators as essential medicines, and governments have the legal tools, including compulsory licensing, to buy or make generics when a patent holder's price or conduct blocks access.
We are asking governments to use those tools, and to make sure that everyone with CF can access the medicines they need.