"There is a moral vacuum at the heart of your company": cystic fibrosis patients call out Vertex

A year ago cystic fibrosis patients met with executives at Vertex Pharmaceuticals to to discuss the gross inequality of access to lifesaving cystic fibrosis (CF) modulator drugs, and to ask that the company lives up to its human rights responsibilities by putting in place a comprehensive and effective global access plan. Since then, almost nothing has changed.

As the North American Cystic Fibrosis Conference takes place this week - the biggest CF-related event in the world - Vertex Save Us and Just Treatment have written once again to Vertex demanding urgent action to ensure that CF patients in every single country get access to the critical treatment they need.

Gayle Pledger - Vertex Save Us & Just Treatment Organiser said:

“We spent years fighting Vertex to win access to CF meds on the UK’s national health service. But their profit at all costs attitude is costing lives on a daily basis as they delay reaching agreements in order to extract the highest possible price; or simply ignore the countries they think are too poor to strike a deal. It is clear CF patients only matter to them if they can help make them richer. But I know the global CF community has a very different attitude and I hope they will join us in putting pressure on Vertex to facilitate access to generic Trikafta - and back our campaign until we win treatment and care for everyone with CF, everywhere.”

Belinda Nell - Vertex Save Us member, South Africa, said:

“Every time I think about the injustice and cruelty of Vertex’s leadership I am moved to tears. Sadly, any changes to Vertex’s behaviour or the appalling inequalities in global access to cystic fibrosis medications will come too late for us. Just last month I lost my second sister to CF - her desperate appeals for compassionate access going ignored by Vertex for years. I am very, very angry. But I will not stop fighting. I will channel that anger into fighting to secure access to CF medications for everyone - in memory of my sisters. I hope Dr Kewalramani and the other Vertex execs live to regret ignoring the lives of Loz and Jen and thousands more like them.”

For media enquiries contact Diarmaid McDonald on diarmaid@justtreatment.org