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South African cystic fibrosis patients take on landmark legal fight for access to lifesaving treatment

Something truly historic is happening in South Africa in the fight for access to medicines. 

Cheri Nel is a 39-year-old cystic fibrosis (CF) patient from Johannesburg, South Africa. She is taking US pharmaceutical company Vertex Pharmaceuticals, the manufacturers of lifesaving CF medication Trikafta, to court for denying her the right to healthcare. 

This legal case seeks to overturn the monopoly Vertex Pharmaceuticals holds on the vital yet eye-wateringly expensive medicine she needs to survive. Priced at $326,000 per patient per year, Trikafta holds the promise of dramatically extending the life expectancy of CF patients.

If Cheri wins, she will be granted a “compulsory licence”, which would overturn the patent monopoly on the medicines, paving the way for generic versions of the drug to be provided which cost a fraction of the US company’s price.

Vertex have fought back - filing an 800 page response with the High Court that signals their intent to protect their monopoly despite the threat it poses to the lives of South African CF patients.

But now, the case is being taken to a historic new level. Cheri is calling on all eligible CF patients in South Africa to join her as co-applicants in this landmark legal case - meaning that if Cheri wins, every eligible CF patient wins too. 

This mass legal mobilisation is thought to be the first time anywhere in the world when patients have taken on a drug company monopoly in this way.

Cheri said:

“This huge American company has used their patent monopolies and billions in the bank to bully CF patients and governments across the world. They have held our lives to ransom as they try to maximise their profits - never caring about the human cost. My fight has always been for every South African with CF. Now we have a chance to all stand together and show Vertex - in the spirit of Ubuntu - united we are stronger than they will ever be.”

Beyond South Africa, efforts to overturn Vertex’s monopoly on Trikafta have been launched in multiple countries on four continents as patients and their families mobilise to address the threat to their lives arising from the behaviour of the company. 

Vertex has over $13bn in the bank - yet only two middle income countries have access to this lifesaving medicine, whilst no low income countries have access. Patients have had enough of this unjustifiable health profiteering! 

This legal case is about so much more than just South Africa. It’s even about more than just cystic fibrosis. A legal victory against Vertex in South Africa would have major ramifications for the ability of CF communities in other countries to pursue similar tactics to gain access. Not only this, but it would represent an unprecedented challenge to the current global big pharma model - which is costing lives every day whilst generating enormous profits. 

Tanya, the mum of a young son with CF, said: 

“I’m joining Cheri as a co-applicant in this case on behalf of my beautiful son Janco, who is 6 years old. He’s been through so much in his short life and like hundreds of other CF families in South Africa, we need access to these lifesaving drugs now. By acting together, I truly believe that we will be heard. My son deserves a life and a future and I will do everything I can to give him just that”

Every single one of us deserves the right to breathe. By joining forces in this landmark legal case, South African CF patients have the chance to not only save lives, but to make history.

In the coming weeks and months we will be sharing updates on the case and ways that you can show your support. One vital action you can take right now is chipping into the case crowdfunder. So far Cheri has funded this historic legal action out of her own pocket, so any donations will help to pay for further future costs incurred!


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