South African cystic fibrosis patients to fight for access to lifesaving medication

Categories: In The Media.

Cystic fibrosis (CF) is a life-shortening genetic disease that affects over 100,000 people across the world. Without good treatment and care, life expectancy is less than 15 years. Vertex Pharmaceuticals in the US has developed medicines that can transform the length and quality of life of CF patients. However, only 25% have access to these medications because Vertex holds a monopoly and charges $326,000 (R6 820 846) per patient per year for the medications. 

This means the vast majority of CF patients globally cannot afford access. 

The Right to Breathe campaign is a coalition of CF patients, families and advocates fighting to challenge this injustice and secure global access to lifesaving CF treatment. They recently reported that something truly historic is happening in South Africa in the fight for access to medicines. 

Cheri Nel is a 39-year-old Johannesburg-based Investment Banker who has cystic fibrosis. 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 extremely expensive medicine she needs to survive. Trikafta could dramatically extend the life expectancy of CF patients. If Cheri wins, she will be granted a “compulsory license”, 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.”

You can donate to the Crowdfunder to support Cheri Nel and listen to her describe her mission and ask for the help of all CF patients to be co-applicants in the case on the Cystic Fibrosis Association Facebook Page

Source: Right to Breathe

Read more about this story from the following sources: Daily Maverick,  Canary media website and The New York Times.

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