In a pivotal case for access to affordable medicines in South Africa, the Treatment Action Campaign (TAC) and Doctors Without Borders (MSF) Southern Africa – represented by SECTION27 – came together earlier in 2023 to help champion access to a lifesaving cystic fibrosis drug known as Trikafta.

Cheri Nel, a South African woman living with cystic fibrosis, and the Cystic Fibrosis Association started legal action against Vertex Pharmaceuticals in 2023, challenging Vertex’s monopoly. The TAC and MSF approached the court to be joined as amici curiae. Vertex, an American pharmaceutical company, holds the patents for both Trikafta and Kalydeco – medicines that have the potential to significantly improve the lives of cystic fibrosis patients. However, at $311,000 per year per patient in the US (about R5.7 million), it is out of reach for many living with cystic fibrosis.

The application is for a compulsory licence, which, if granted, will mean another manufacturer of generics for Trikafta and Kalydeco would be permitted to enter the South African market. In this case, it is likely that competition between manufacturers would affect the price of this medicine, thus making it more accessible. A compulsory licence allows the holder to produce a patented product without the patent holder’s consent. 

Spotlight has reported on the case and that Nel’s lawyers argued that by failing to register or supply their CF medicines in South Africa, make them available in South Africa at reasonable prices, or license other companies to supply the medicines, Vertex is abusing its patents. They further argued that Vertex’s actions are violating the constitutional rights of people with cystic fibrosis in South Africa, including the right to healthcare.

Spotlight has reported on the issue here, here, and here.

Johannesburg-based investment banker Cheri Nel is the driving force behind a court case that may result in dramatically expanded access to life-changing new cystic fibrosis medicines. (Photo: Supplied / Spotlight)

Cystic fibrosis is a devastating multisystem illness known for causing frequent and severe lung infections, antimicrobial-resistant bacteria, liver and pancreatic damage and lung failure, and can result in the potential need for lung transplants even in children as young as two years. 

This case will set an important precedent that can influence access to medicines not only in South Africa but around the world. The involvement of SECTION27, where I work, underscores the broader issue of affordable access to medicines and the impact of intellectual property on healthcare access. 

Read more in Daily Maverick: In-depth – how cystic fibrosis is being treated in South Africa while breakthrough meds remain out of reach

At present, MSF and TAC are awaiting the court’s decision to be admitted as friends of the court, while in the main application, the respondent (Vertex) has filed answering affidavits. 

And while the clock is ticking in the courts, many families in South Africa are waiting and holding on to the glimmer of hope that access to this medicine represents. For many who live with cystic fibrosis, a successful outcome of Nel and the Cystic Fibrosis Association’s application will mean a life where they can breathe easier. 

Among those waiting is six-year-old Janco Koorts.

A journey of hope

His mother, Tanya Koorts, says living with cystic fibrosis is like fighting every day for every breath. She says Janco had been diagnosed with cystic fibrosis at the age of two. She has since been on a mission to raise awareness about this life-threatening disease. Hope, her family and support from the cystic fibrosis community have kept her going, she says.

Reflecting on the start of their journey in the Northern Cape, she says: “The knowledge about cystic fibrosis is very little. We were lucky that Dr Jooste at the Kimberly public hospital diagnosed him so early on. After that, he sent us to the Red Cross Hospital in Cape Town and so our long journey of hope started,” she says.

Later, in a new job in a new city, the family began again in Pretoria. They started Janco’s treatment at Steve Biko Academic Hospital and then moved to the Charlotte Maxeke Johannesburg Academic Hospital.

“They don’t have much, but they do everything they can there to help. They also don’t have a lot of support but the people at Charlotte Maxeke helped Janco on his journey to stay breathing,” Koorts says, applauding the public health system.

Janco now has comprehensive medical aid which covers his R48,000 monthly medication bill and Koorts says she can now “breathe easier”. That, however, is just a quarter of the cost of living with cystic fibrosis.

When the Koorts family heard about Trixacar, a generic version of Trikafta, it only strengthened their resolve to save Janco’s life. The patent rights registered by Vertex Pharmaceuticals in South Africa, however, do not allow for the import of the generic drug. Produced by Gador in Argentina, Koorts will have to travel to that country to buy the medicine. This will cost about R400,000 to cover the travel costs and six boxes of Trixacar that will last six months, she says. (You can help the family fund this by donating here.)

‘A thief of joy’

Apart from the financial burden, having a young child with cystic fibrosis has affected the Koorts family mentally and emotionally.

“Cystic fibrosis is a thief of joy. Nobody speaks about fighting to save someone’s life,” says Koorts.

She says her family had to adjust to some of the social changes in their surroundings as well. 

“At school, he has to fight for himself to stay alive. If we go to a restaurant and there are people smoking, it affects him and we have to move. So, as much as we have tried to give Janco a normal childhood, these social aspects will always hinder progress, and he is always reminded that he is sick. But I live in hope and so does he.”

In terms of her family relationships, Tanya says  her other children are healthy and for them to see their baby brother suffering every day hurts them. 

“It’s painful as parents. Janco needs all the attention. I can’t go to a parent’s evening for my other kids. It’s difficult,” Koorts says.

She says she is proud of Janco.

“My child doesn’t know that he is dying. We fight every day so that Janco can have just one more breath.”

And that is ultimately what it is all about. From one perspective the exchange of documents in the high court may seem abstract and full of legal technicalities. But let there be no doubt, for kids like Janco it is literally their futures that are being decided. DM 

Adams is a communications officer at SECTION27.

NOTE: This opinion piece was written by a staff member of SECTION27. Spotlight is published by SECTION27 and the TAC, but is editorially independent – an independence that the editors guard jealously. The views expressed in this piece are not necessarily those of Spotlight.

This article was published by Spotlight – health journalism in the public interest.