There are about 700 people registered with Cystic fibrosis in RSA. Some private and some public patients. The symptoms of CF are similar to malnutrition and so we won’t know how many poverty stricken children die of CF without infant screening (this is another story).
Vertex developed a wonder drug Trikafta for CF patients. it is life saving, it has changed CF from a death sentence and lifespan of about 30-40 years to possibly normal mortality (time will tell).
US based Vertex makes Trikafta, when they registered it, they registered the patent in all countries with patent laws, and then didn’t give a license for the patent for local companies to make it, they also didn’t register it with the medicines council because we are #tooPoor and could not afford it. They sold it to UK and European governments behind closed doors with NDAs in place.
Cheri Nel took them to the High court on Human Rights charges, as well as to the competitions commission (latest update here https://www.businesslive.co.za/bd/national/health/2025-08-13-health-activists-urge-competition-commission-to-reopen-vertex-probe/)
The High Court battle resulted in Vertex saying they would make available to applicants. So every private patient has to do the following:
- Register a request with SAHPRA S21 - to ask for the medication to be allowed into the country for a specific patient, repeat every 6 months.
- Apply to chronic medical aid funding, to get it approved. Approval comes in for 20% of the cost from medical aids. repeat every 6 months.
- The people who import the drug then assist patient to apply to a very interesting fund AICF to fund the co payment of 80%.
State patients cannot get this medication. the Government can’t afford the cost of it.
Why would you register a patent and then not allow access?
Why would you not register the medicine in RSA?
I have some theories, which have not been tested but make rational sense.
My theory is that Vertex don’t want any documents which show how much they are willing to sell Trikafta for. If they registered it in RSA and allowed a discount, it is public information. And the first world clients would have a fit at paying 4 times the price that they would let RSA have it at. So how do you supply a drug and keep the cost hidden?
Well you make people apply for it through SAHPRA, you provide an invoice for the full cost R175 000 a month, medical aids have agreed to pay 20%, and you set up a veiled big pharma fund to fund the 80%. So at least you do get the R35 000 a month from the medical aid, but you don’t have to divulge how much you are selling it for. All invoices have the same amount on it, as the first world countries.
Why not provide the state patients, because either the government won’t be able to ensure secrecy of what the final cost was, (it will leak) or it just is too little money to be worth your while, or the government have said they can’t afford R35k per month per state patient for this one drug, life saving or not (most likely).
And so the fight continues, and once again, who pays for the corrupt heart of big business, the poor, the state patients, the people without a voice or funding to demand that there is a human rights violation at play here.
Vertex have made their R&D money back and are making serious money at the moment. Their finances are public. It is pure corporate greed driving this close fisted operation.
And everyone who has access is just so happy to be part of the chosen, the privileged they are not willing to say anything, lest Vertex deny their application, or somehow quash their access.
Fear leads to silence