On Worldwide Cystic Fibrosis Day, let's commit to winning global access to lifesaving drugs
This blog is written by Just Treatment’s Senior Pharma Organiser Gayle.
Today, on Worldwide Cystic Fibrosis day, I wanted to take a moment to introduce myself and talk about the critical work Just Treatment is doing to win global access to lifesaving cystic fibrosis medicine over the coming months.
Cystic fibrosis (CF) is a life-threatening inherited condition that causes lung damage and makes it difficult to breathe properly. CF affects around 100,000 people across the world - and my child is one of those people.
Her life was held to ransom by a drug company which tried to abuse our NHS in order to maximise their profits. But along with other patients and parents we got organised - we took on the company and we won. So I know first-hand the power of the work Just Treatment does, which is why I’m delighted to be joining the staff team as the new Senior Pharma Organiser - taking over from Wiz whilst she is away on maternity leave.
Just like the tens of thousands of Just Treatment supporters across the country and beyond, I believe passionately that everyone deserves access to the healthcare they need. And I am fed up of greedy corporations and the politicians that protect them, denying this right to patients.
Here in the UK, for years the life-changing CF drug my daughter needed was unavailable on the NHS, all because US pharma company Vertex was charging such an unaffordably high price. Then everything changed when myself and a small group of CF families joined forces with Just Treatment to run a campaign that helped to force Vertex to back down. This victory transformed the life of my child and thousands of other NHS patients across the country.
However, outrageously these lifesaving drugs are still not available in the vast majority of countries. Vertex is charging up to a staggering $326,000 per person per year for the treatment. As a result, children like Janco in South Africa, Vihaan in India, and Sofyia in Ukraine are getting sicker by the day with no help in sight.
So it’s time to take the fight against pharma greed global. I’m thrilled to join the Just Treatment team to lead on this work, and bring together CF patients and their families from all over the world to challenge Vertex’s deadly profiteering and win access for everyone, everywhere. We are marking Worldwide Cystic Fibrosis Day today by hosting a global meeting of advocates, patients, clinicians and access to medicines experts to share information and discuss worldwide access for all. But beyond that, over the coming weeks and months we’ll be sharing more updates on this campaign and various ways you can get involved. If you haven’t yet signed our petition, click here to take action!
I’m very proud to be joining an organisation that does not shy away from taking on the rich and powerful. Vertex rakes in billions of dollars in profit every year whilst refusing tens of thousands of young people access to treatments that could save their lives. It is criminal - and we can't let them get away with it.
Vertex might have a huge bank account, but I have seen first hand how patient-led organising can succeed. Following the campaign victory in the UK, I helped to support a mother of a cystic fibrosis patient to lead a similar campaign in Poland - which also ended up winning. Now we’ll be working to repeat this success in many other countries across the world.
When enough of us come together to fight for our right to healthcare, we can achieve amazing things. I’m so excited and honoured to campaign alongside patients across Britain and beyond for fair and equal access to treatment as well as a stronger NHS. Because corporate profits should never come before people’s lives.