South African CF families call on the Competition Commission to re-open Vertex investigation

On Thursday 7th August, dozens of cystic fibrosis patients, family members and advocates gathered in Pretoria to hand in a 100-page dossier to the Competition Commission of South Africa, demanding that it immediately re-open its investigation into Vertex Pharmaceuticals for abuse of dominance, excessive pricing, and anti-competitive conduct. This action was led by the South African Cystic Fibrosis Association (SACFA) and supported by the Right to Breathe campaign and Health Justice Initiative.

The dossier presented damning evidence and testimonies from families, including children living with cystic fibrosis, and reveals that about half of all eligible CF patients in South Africa still cannot access Trikafta, the life-saving treatment for CF, despite the Commission's December 2024 announcement that "access had been secured". Read the memorandum submitted to the Competition Commission here.

This disparity in access is mainly the result of the anti-competitive conduct of Vertex. Where more privileged patients are accessing Trikafta, it is a game-changer for their health - and they are doing so through a handful of high-end medical schemes or self-funding.

Yet the dossier, alongside powerful testimonials presented directly to representatives from the Commission, highlighted that many patients:

• Cannot access treatment via their medical schemes (treatment is excluded).

• Do not belong to medical schemes.

• Cannot self-fund due to the astronomical costs involved every month.

• Use the public sector for high-quality CF care, but the state cannot afford to buy the excessively priced treatment and is not providing it.

After the meeting, campaigners held a minute of silence and a wreath-laying ceremony to remember all South African CF patients who have died without access to life-saving medicine.

“We have a gross and unconstitutional situation where privilege, not medical need, has become the proxy for access” said Kimberly Keyzer, SACFA Chairperson. “The Competition Commission was misled into believing access was secured when the reality is that only the very wealthy can afford this life-saving treatment”.

This action is part of our global fight against Vertex’s deadly patent monopoly abuse that has created a huge global inequality into lifesaving treatment. The Right to Breathe campaign has been supporting efforts to break the monopoly in South Africa and countries all across the world.

“We’ve seen this pattern from Vertex across the globe: protecting monopoly profits at the 

expense of patients’ lives. What’s happening in South Africa is not an exception - it’s part of a deliberate global strategy. A programme that leaves out half the patients is not a humanitarian or altruistic act; it’s a calculated move designed as an anti-competitive, monopoly-protecting manoeuvre to block legitimate challenges to Vertex’s patent abuse and protect their profits” said Gayle Pledger, Right to Breathe Senior Organiser.

Since the meeting took place, the Competition Commission spokesperson Siyabulela Makunga has stated that in light of the new information it had received it would “reassess the issue of price transparency and further explore cost-effective access to cystic fibrosis treatment”.

We will not stop calling out Vertex’s lies and deception. They only open access when forced, and they try to pit patients against each other to protect their profits. But we are united, we are relentless, and we will not let them get away with it - and we won't leave any CF patient behind.

We will keep campaigning in South Africa and across the world until every patient, everywhere has the treatment they need!