Earlier this year, in a landmark case for access to affordable medicines in South Africa, the Treatment Action Campaign (TAC) and Doctors Without Borders (MSF) Southern Africa – represented by SECTION27 – collaborated to help champion access to lifesaving new cystic fibrosis treatments.
Cheri Nel, a South African woman living with cystic fibrosis (CF), and the Cystic Fibrosis Association started legal action against Vertex Pharmaceuticals challenging Vertex’s monopoly on the treatments.
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 a price of US $311 000 per year per patient in the United States, it is out of reach for most people living with the disease, writes Aneesa Adams for Spotlight.
The court 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 the drug, thus making it more accessible.
A compulsory license allows the holder to produce a patented product without the patent holder’s consent.
Nel’s lawyers had argued that by failing to register or supply their CF medicines in South Africa, make them available at reasonable prices, or licence other companies to supply the medicines, Vertex was abusing its patents. They further said Vertex’s actions violated the Constitutional rights of people with cystic fibrosis in South Africa, including the right to healthcare.
Cystic fibrosis is a devastating multi-system illness causing frequent and severe lung infections, 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 old.
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 underscores the broader issue of affordable access to medicines and the impact of intellectual property on healthcare access.
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.
But meanwhile, many families in South Africa are waiting and holding on to the glimmer of hope represented by access to this medicine.
For many who live with cystic fibrosis, a successful outcome of the application from Nel and the Cystic Fibrosis Association will mean a life where they can breathe easier.
Among those waiting is six-year-old Janco Koorts, from the Northern Cape.
A journey of hope
His mother, Tanya Koorts, said her son was diagnosed at the age of two.
“There is little knowledge about cystic fibrosis. We were lucky the doctor at the Kimberly public hospital diagnosed him so early. After that, he sent us to the Red Cross Hospital in Cape Town and our long journey of hope started.”
Later in a new job in a new city, the Koorts began again in Pretoria. They started Janco’s treatment at the Steve Biko Academic Hospital and then moved to Charlotte Maxeke Academic Hospital.
“They don’t have much, but they do everything they can to help. They also don’t have a lot of support but the Charlotte Maxeke staff have helped Janco on his journey to stay breathing,” Koorts said.
Janco now has comprehensive medical aid which covers his monthly R48 000 medication bill and Koorts says she can “breathe easier”. That, however, is just a fraction 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 their son’s life.
The patent rights registered by Vertex Pharmaceuticals in South Africa, however, do not allow for the import of Trixacar.
Trixacar is produced by the pharmaceutical company Gador in Argentina.
Koorts will thus have to fly to Argentina to buy the medicine. This will cost about R400 000 for the travel costs and six boxes of Trixacar that will last six months, she said.
‘A thief of joy’
Apart from the financial burden, having a child with cystic fibrosis has affected the Koorts family mentally and emotionally.
“Cystic fibrosis is a thief of joy,” she said, “but I live in hope and so does he.”
She says she is proud of Janco. “My child doesn’t know he is dying. We fight every day so that he 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 children like Janco it is literally their futures that are being decided.
*Adams is a communications officer at SECTION27.
See more from MedicalBrief archives:
SA’s patent system denies vital drug access
Court battle looms over lifesaving cystic fibrosis drug
Emotive campaign over £105,000 per year cystic fibrosis drug