Brooklyn Rex
Brooklyn Rex

Brooklyn Rex had had 2,000 injections by the time she turned four. The little girl had spent two months in isolation in the Red Cross Children’s hospital while doctors tried to find out what was wrong. Her ailment: juvenile arthritis, a painful condition which causes high fever and is resistant to medication. She was then struck by Macrophage activation syndrome, a debilitating rheumatic disease. It took more than a year to diagnose her rare illnesses, despite the fact she started developing rashes at eight months, with fevers regularly over 40°C.

But the drug she needed is unavailable in SA. So her family borrowed money and flew to America for treatment to save her life. As South Africans, they are not allowed to work in the US so the Rex family survives on donations and crowdfunding.

But most South Africans needing rare, expensive or unregistered drugs can’t move abroad as they did. Instead, patients will fight medical aids or, like activist Tobeka Daki, who couldn’t afford the R500,000 breast-cancer drug Herceptin, die without knowing if she could have lived.

Most medicines in SA are off-patent and cheap. Their average cost in the private sector is R148, according to the 2016 Mediscor Medicines Review. Only 16% of medical aid spend goes to pharmaceuticals; most of it is used to pay hospitals.

But a growing number of new treatments for rare diseases or for once-deadly cancers is pushing up spending on medicines. New drugs typically cost R69,845 a year. Medical aids struggle to pay for them.

It took an announcement about a cancer drug price probe by competition commissioner Tembinkosi Bonakele to shine the spotlight on the R500,000/year cancer drug Herceptin, made by Roche. It prevents cancer returning in about 40% of patients with HER2-positive breast cancer, a deadly and aggressive form.

But a state-run pilot programme is paying R211,190/year for Herceptin — less than half the private-sector price.

Roche (charged with exclusionary conduct by the commission) and the department of health are said to be weeks away from a deal in which state patients – about 300 a year – with early-stage breast cancer get a year’s course of Herceptin. Roche confirmed negotiations were at "an advanced stage" and that the price offered to the state is similar to that offered in India — around R110,000.

It’s unclear if the competition probe will jeopardise the deal, as the commission had not contacted the health department.

At least Herceptin is registered in SA. Kelly du Plessis, founder of NGO Rare Diseases, says there are 14 treatments for pulmonary hypertension but only one is available in SA. And it works better with another treatment (not available in SA) in dual therapy. So the one available often fails.

About 300 members of Rare Diseases use section 21 permits to import rare medicines available only overseas. They need to reapply for the permits every six months, sometimes facing delays, and medical aids don’t pay for section 21 medication.

The problem is drug companies don’t always want to register rare-disease medicines here, given the long process and tiny market. "The process is so laborious. Nobody wants to do it," says Du Plessis.

Joey Gouws, registrar of the Medicines Control Council (MCC), which has just been reconstituted as the SA Health Products Regulatory Authority, recently said there was a backlog of 7,900 medicines awaiting registration.

Du Plessis says medical aids often fight against paying for new medicines. First, they argue that if the drug is not available in state hospitals, it isn’t necessary to pay for it — a strange but legal basis for deciding what is good enough for private care. Second, they say new drugs are too expensive or the data on rare-disease drugs is too sparse.

In the US, medical aids or patients only have to pay for a high-cost drug if it works. If it doesn’t, the drug company must bear the cost. SA law prevents this.

Medicine Access scientist João Carapinha says: "In oncology few medicines are 100% effective. However, medical schemes and the department of health are currently paying for treatment failure. We need a better way to pay for medicines that perform well."

The department’s medicine pricing policy is woefully out of date, lagging behind payment innovations in other markets. For example, bulk buying of high-cost drugs by a group of medical aids (to wrangle better discounts) is also banned. In the UK, government uses an equation to work out if a drug is too expensive, measuring the cost of a life saved or lengthened and its economic benefit. Says Carapinha: "What’s lacking in SA is a scientific approach based on international standards to determine when a medicine is priced excessively and is therefore unaffordable. The department of health has a lot of work to do to get to this stage."

While policymakers dither, people like Brooklyn Rex and Tobeka Daki, and many others, are the casualties.

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