Since early 2023 we have been publicly campaigning in support of a legal fight to overcome Vertex’s deadly monopoly on cystic fibrosis (CF) treatment in South Africa. On 6th August 2024 we released a brief statement in response to the news that the legal case, demanding a compulsory licence that could facilitate affordable generic access, had been withdrawn from the South African High Court.
This decision was taken without consultation with the Right to Breathe campaign, and follows an agreement - the terms of which remain confidential and opaque - that means families with high-end medical insurance will be able to access Vertex’s CFTR modulator drugs including Trikafta. Firstly, it should be noted that this move by Vertex to provide some access in South Africa only came about as a result of the pressure they were put under by the high court case and the campaigning undertaken by the CF community to threaten their monopoly. Everyone who cares about equitable access should heed this lesson.
Tragically, however, it is estimated that only between 25-33% of South African cystic fibrosis patients stand to benefit from access under this deal. The majority of South Africans in need of these lifesaving medicines will be left behind.
Our commitment has, and always will be, to winning access for every CF patient, everywhere. We share the CF community’s sense of frustration and deep despair at this news.
Heinchen from Johannesburg, the mother of 12 year old Nika who was a co-applicant in the legal case, told us:
“I have kept my daughter alive with limited resources for 12 years. When I heard about Trikafta, I was so happy, but then came the price tag and I felt utter defeat. Then came the hope of someone taking on a company like Vertex, and when the call came to join the compulsory licence case I signed Nika up. I hoped that if enough pressure was placed on this company they could bend and make it possible for Nika to have access.
“Then came the bitter disappointment when I heard of the deal Vertex made with the top-end medical aids in South Africa, knowing that again this is so far out of my reach. Out of my child’s reach. Then I felt demolished by the news that the case against Vertex was withdrawn.
“I fear that Vertex’s greed is going to kill my child, but also so many others that have to fully depend on state health care. We visit the clinic and hear another child that has lost their fight because they live on the edge. I also hear how those that have access are seeing improvements. Though my hope has been shattered, I will not give up. I have a responsibility to fight for my daughter and all that are in the same position. To give them a chance at a better life.”
We are deeply disappointed that the case for a compulsory licence has been withdrawn when the grounds for court intervention to overcome this life threatening monopoly are still strong, with the majority of South Africa CF patients still unable to access Trikafta on reasonable or affordable terms, but the financial costs of trying to hold a multi-billion dollar pharmaceutical company to account for their deadly patent abuse in the courts ultimately proved prohibitive.
This is another example of Vertex wielding its life or death power and financial might to divide CF communities, undermine public health, and weaken the health system of a country - whilst doing the bare minimum to address the threat its business practices hold to CF patients' right to health, in order to protect its excessive monopoly profits.
Gayle Pledger from the Right to Breathe campaign argued:
“It would cost Vertex just 0.028% of their annual revenue to save the lives of every South African CF patient by providing access at the estimated cost of manufacturing these medicines. Instead they have chosen to replicate the divisive and deadly tactics which we have seen them apply in country after country, focused not on saving lives but saving them money, allowing them to continue their patent abuse, and maximise their monopoly profits.”
Blame for this outcome - which leaves hundreds of CF patients in SA without access to the medicines their lives depend on - rests firmly with Vertex. Those involved in the case had made huge personal and financial sacrifices to pursue this case, and the pressures on them were ones no patient should have to face. Vertex has the power and resources to save every life in South Africa. They are choosing not to do so.
It further points to the weakness of a system designed to regulate intellectual property monopolies, and prevent patent abuse that relies upon individual affected patients finding the resources and capacity to stand up to a multinational corporation with tens of billions in cash in the bank. It is not fit for purpose. We need urgent reforms to stop the intellectual property rights claims of pharmaceutical corporations devastating millions of patients’ right to health.
Since this development we have been exploring a number of other options and we are aware that other players are also looking at different routes to overcome the barriers that are leaving many families behind. We will keep searching for ways to ensure that all South African CF patients can access the lifesaving drugs that they desperately need.
For those families living in South Africa who are affected by the recent legal case withdrawal and who have been left without hope of accessing Trikafta, please join us and other advocates on Wednesday 4th September at 6:30pm (SA time) to share information on the efforts being made to address this inequitable and tragic situation.
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