Access for the Privileged? Why We’re Demanding the Competition Commission Reopen the Vertex Investigation

On 7 August 2025, the South African Cystic Fibrosis Association (SACFA) stood shoulder-to-shoulder with the Health Justice Initiative (HJI) and our allies, Just Treatment’s “Right to Breathe” action group, Doctors and others, outside the Competition Commission offices. We came with one clear message:

Access to life-saving cystic fibrosis treatment is not secured in South Africa – and we refuse to accept a system where privilege decides who lives and who suffers.

The morning was crisp and charged with purpose. Among the group were a small number of parents and patients living with cystic fibrosis – our CF warriors.

“You’ll notice we only had a handful of patients and parents at the Competition Commission on the day,” said Kim, one of SACFA’s leaders. “That’s because Thursday is clinic day at Steve Biko Academic Hospital, and those appointments are essential. Missing them isn’t an option for many families.”

There was another reason the group was small. “Because of the critical risk of cross-infection, CF warriors cannot be close to one another. Masks are essential, and we must keep at least six feet apart. That means we can never gather in large numbers – not even for something this important,” Kim added.

Even so, the small crowd carried the voices of an entire community.

The Reality Behind the “Access” Claim

In December 2024, the Competition Commission announced it was closing its investigation into Vertex Pharmaceuticals, the sole supplier of the breakthrough cystic fibrosis drug Trikafta, claiming “access has been secured.”

Our lived reality tells a very different story.

SACFA’s 2025 outreach found:

  • Around half of all eligible patients – including children – still cannot access Trikafta.

  • Only families with top-tier medical aid, or significant financial support, can afford the hundreds of thousands of rands per year required.

  • Public sector patients are effectively excluded, asked to pay R33,333 per month for access.

  • Many medical schemes are not part of the Vertex programme.

  • Waiting periods of up to 24 months still exist for some families – a delay that could cost lives.

Why Trikafta Matters

Cystic fibrosis is a life-shortening genetic condition affecting the lungs and digestive system. Thick, sticky mucus builds up, leading to infections, organ damage, and severe complications.
While there is no cure, Trikafta targets the root cause of the disease for most patients, improving lung function, reducing infections, and transforming quality of life. Without it, CF patients face progressive lung damage, frequent hospital stays, and a reduced lifespan.

The Problems with the Vertex Programme

The current Vertex “access” programme:

  • Operates in secrecy – with no price transparency and gag clauses preventing patients from speaking openly.

  • Excludes many medical schemes and lower-tier plans.

  • Offers no legal guarantees for lifelong access.

  • Can be withdrawn at any time – as has happened in other countries.

  • Refuses to allow dose reduction strategies that could expand access.

Vertex has still not registered Trikafta with the South African Health Products Regulatory Authority (SAHPRA), meaning the State cannot procure it, and the official private-sector price remains hidden from public scrutiny.

What We’re Calling For

SACFA, HJI, and our allies are demanding that the Competition Commission:

  • Reopen the investigation into Vertex for abuse of dominance, excessive pricing, and anti-competitive conduct.

  • Stop hiding behind confidentiality – make undertakings and scheme eligibility lists public.

  • Ensure price transparency and the inclusion of all eligible patients, not just the privileged few.

  • Work with patients, families, and clinicians to develop an equitable and sustainable access plan.

  • Push for compulsory licensing to allow generic competition and affordable access.

We also call on:

  • Medical schemes to lift unfair waiting periods and broaden coverage.

  • SAHPRA to ensure registration of Trikafta without further delay.

  • The National Department of Health to add Trikafta to the Essential Medicines List and list cystic fibrosis as a Prescribed Minimum Benefit.

Because Every Breath Matters

We have been here before – South Africa has stood up to pharmaceutical giants and won. We can do it again.
Cystic fibrosis patients do not have time for secrecy, bureaucracy, and profit-driven gatekeeping. Every delay costs health, dignity, and lives.

“I want to extend my heartfelt thanks to the patients and parents who bravely shared their stories and their daily struggles with us. Your courage is the reason we are here.” Kim said.

We will not be silenced.
We will not accept that wealth should decide who gets to breathe.
We demand #AccessForAll – now.

For more information, download these Frequently Asked Questions here

See featured media articles in response to our action on Thursday, 7 August 2025. You can view the articles here