In September, as part of our global campaign for equitable access to life-saving cystic fibrosis (CF) medicines, we travelled to Boston in the US with cystic fibrosis (CF) family representatives from around the world in a powerful show of solidarity and to highlight the thousands of patients that are suffering without access to lifesaving CFTR modulators, including Trikafta. Our aim was to take our fight to the doorstep of Vertex’s offices and raise awareness at the North American Cystic Fibrosis Conference (NACFC) of the unacceptable global inequity that exists. Here are some of the highlights….
Taking the fight to Vertex's doorstep
Gathering outside the conference centre, we were joined by more than 80 supportive clinicians and advocates from around the world including from South Africa, Turkey, Egypt, Jordan, Russia and the US. Together, we marched to Vertex's headquarters to deliver a petition signed by over 142,000 people worldwide, demanding fair access to CF medicines for every kid in every country. You can watch a video of this here.
In a show of unity, we stood shoulder-to-shoulder on the doorstep of Vertex Pharmaceuticals - the company that charges up to $326,000 per patient per year for CF treatments that could be produced for less than $6,000. Despite their prior indication that they would engage with us, Vertex representatives did not come to meet or even acknowledge us, demonstrating their blatant disregard for CF patients, their families, and the clinicians who tirelessly advocate for them.
A global coalition demanding change
On the steps, clinicians and parents of children with CF from India, Lithuania, Turkey, the UK, and the US raised their voices together, calling out Vertex's unconscionable behaviour. It's staggering to consider that Vertex could provide access to these crucial medicines to everyone in need without significantly affecting their profits, yet they continue to prioritise profit over lives, leaving thousands to suffer and die.
After the protest, Lynn, a retired Paediatric Pulmonary Clinical Nurse Specialist told us:
"I've been a CF clinician for 40 years, and what I did today was probably one of the most important things I can do for patients. Thank you!"
Her words underscore the significance of our collective action. Clinicians like Lynn have dedicated their lives to improving patient care, and their support amplifies our message that equitable access to CF treatment is an absolute necessity.
Changing the narrative at NACFC
This year, US multi-billion dollar charity the Cystic Fibrosis Foundation, welcomed us to their conference - a significant shift signalling growing recognition of our cause. Sessions called "Financial Toxicity in CF Care" and "Is The Price Really Right?: Keeping Innovations in CF Care Accessible" brought essential conversations to the forefront, and Right to Breathe representatives were invited to speak directly to attendees.
One CF doctor, a long-time conference participant, expressed disbelief and satisfaction that such candid and revealing discussions were finally taking place on this stage. The largest CF conference in the world is no longer just a platform for wealthy countries to celebrate medical breakthroughs, and drug companies to crank up their PR and spin operations; it's now a forum that highlights the stark disparities faced by patients in less affluent nations and the profiteering that’s threatening their lives.
While we've achieved significant victories - our fight goes on. We continue to demand that Vertex lowers their prices or drops their patents to ensure that every patient, regardless of their location or economic status, can access the treatment they need.
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