It’s been an extremely busy couple of months for the Right to Breathe campaign - we’ve confronted Vertex online and in person, and we’ve taken the fight for global access to the largest gathering of CF experts in the world. Here’s more on what we’ve been up to…
CF parents protest at Vertex’s Boston HQ & North American CF Conference
Right to Breathe campaigners took the
North American Cystic Fibrosis Conference by storm last month, as parents of children with CF from India, Lithuania, the US and UK joined together with researchers, clinicians, and other allies, in talks, protests and outreach efforts at the Vertex-sponsored event in Phoenix Arizona. They spoke about the deep injustice and pain Vertex’s excessive prices are causing all around the world.
CF mum and Right to Breathe campaigner, Gayle Pledger, said their impact was clearly visible: “We had overwhelming support from everyone there, with people also voicing their anger at Vertex’s greed-fueled behaviour, and asking how they could help. By the end, hundreds of attendees were wearing our stickers to demonstrate their support.”
Encouragement also came from many of the conference attendees during the sessions. In one event Associate Professor Meghan McGarry, Pediatric Pulmonologist at the University of California in San Francisco, called out Vertex and their unacceptable behaviour: “This is not normal behaviour for a pharmaceutical company…Vertex are making record breaking profits…
They are using the CF community, they are not caring for the CF community. The drugs don’t need to be this expensive. They can give access so we can have generic drugs and they are refusing. This is a moral issue.”
The parents kicked off their US trip in Boston, where they joined with US allies to stage a
die-in protest at the global headquarters of Vertex Pharmaceuticals. Early on the morning of the 31 October a group of Right to Breathe protesters entered the shiny atrium of Vertex’s huge Boston HQ. Carrying a banner asking, “Vertex: How many billions is enough?”, the parents and access to medicines activists released balloons inside carrying messages from CF patients all around the world who desperately need affordable access to CF drugs. Baffled security guards revealed how little Vertex is used to this kind of pressure - something we know we need to change.
Vertex execs unable or unwilling to answer basic questions on global access
The protest came a few weeks after Vertex Save Us and Right to Breathe representatives from across the world held a deeply frustrating Zoom meeting with senior Vertex executives to discuss their responsibility for the deep divide in global access to CF treatment, and a supporter action which saw over 9000 messages sent to Vertex CEO Reshma Kewalramani demanding that they act.
On the call the executives, including Amit Sachdev and Fosca De lorio, refused to concede to any of the demands made to facilitate affordable access to CFTR modulators made by the parents and doctors on the call. Indeed they doubled down - acknowledging they are fighting to protect the patent monopolies they hold even in countries where there is no prospect of widespread access to Vertex’s unaffordable but lifesaving medicines.
Vertex instead argued that they would solve access issues in low and lower-middle income countries through a donation programme. They argued that upper middle income and high income countries are all seen as commercially viable - meaning the corporation will hold out for deals with health systems in those countries that secure them the highest possible price, even if patients die as negotiations play out.
Executives were unable to answer a series of basic questions about the specifics of the programme, like which countries are currently receiving treatment, how many patients are benefiting, and what the time scale is for expansion to cover every patient currently dying without access. Despite promising to respond with answers to these questions after the call, an email seeking clarity went unanswered for almost six weeks. The response that came failed to answer any of these and other substantive questions, deeply angering those involved, including Gayle:
“We have no faith that a donation programme controlled by Vertex, with no transparency, and no accountability mechanisms will solve the deep injustice created by their immoral pricing. But even if this is all they are willing to commit to, the insulting failure to answer even our most basic questions about the programme shows a callous disregard for the lives and wellbeing of CF patients and their families that feels insulting, even for a company with the track record of Vertex.”
On the call South African, Belinda Nell, spoke about the deaths of two of her sisters from CF. She recounted being on a call with these same Vertex execs two years ago, when similar promises were made to address global inequality. They promised to engage with Belinda about a request for compassionate use access for one of her sisters, but these requests went unanswered. Her sister subsequently died. In a powerful exchange, Vertex representatives started to offer their condolences, before Belinda interjected “Please don’t. Just don’t.”
Anger at the complete inadequacy of Vertex’s response was covered in this Stat News piece, and US Senator Bernie Sanders also slammed Vertex's behaviour in a recent Guardian article! If you share this anger, please take this Twitter action and tell Vertex that ignoring patients and failing to answer our questions is insulting and unacceptable.
treatment was what the donations are to fund
I may not have CF, but as a chronicall ill patient with a lung disease, I know all about not being able to breath. I support this campaign to win universal access to CF treatment for ALL around the world who need it.