Teen with rare blood disorder wins ruling on R7.3m treatment

In a case that has put what medical aids should cover in the spotlight, an unnamed 15-year-old with a rare blood disorder has won the right to treatment costing roughly R7.3 million in the first year – and R6.1 million annually thereafter – to keep him alive.

His medical scheme, KeyHealth, initially refused to pay for it, then offered to cover half the cost.

According to the Medical Schemes Act and its regulations, prescribed minimum benefits (PMBs) for 26 chronic conditions and 271 diseases must be paid in full, regardless of cost – but the growing number of high-cost drugs and newer treatments also raises questions about whether this is sustainable.

The teenager, whose identity is being protected, has a rare blood disorder known as paroxysmal nocturnal haemoglobinuria. He requires emergency blood transfusions, which increased in frequency from once every 143 days to once every 13 days.

The transfusions are no longer working. 

He needs Ultomiris, a new drug in South Africa, or he will die, says Mark Hyman, CEO and founder of advocacy organisation MediCheck.

Hyman became involved after the teenager’s treating haematologist, Professor Jacques Malherbe of the University of the Free State, approached him.

Hyman is fighting the regulator, the Council for Medical Schemes (CMS), on the patient’s behalf. He also sits on the Clinical Advisory Committee of the CMS.

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The drug was only registered in South Africa this year, and KeyHealth initially refused to pay for the treatment. It would cost millions each year, and the teen would need it for life. 

Hyman says: “If you are on the drug, you live the life of a normal human being.”

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Speaking about KeyHealth’s refusal to pay for the treatment and the lengthy appeal process, he says: 

“What the scheme is doing is killing this child.”

Only after MediCheck intervened in the case did KeyHealth offer, in June, to fund half the cost, on condition that the family moved from the Equilibrium option to Platinum (the highest option), settled the savings deficit, stayed on the scheme for 2026 and 2027, accepted clawbacks, and agreed to a review of funding if he was admitted to hospital.

Higher levels of care often do require a higher plan option, says Hyman.

But PMBs are the exception. 

“A prescribed minimum benefit is the same on the cheapest option as on the most expensive. If your scheme tells you otherwise, ask it to show you where the Medical Schemes Act says so.”

Hyman says KeyHealth’s audited 2025 accounts show a solvency ratio of 41.6%, meaning it holds more in reserves than the required 25%, and has a surplus of R249.1 million.

Medical aids are not-for-profit by law, and Hyman argues that a surplus is unnecessary.

Initially, the CMS registrar ruled against the teenager, saying that an explanatory note in an annexure to the regulations requires PMB care to match only the level provided in government hospitals.

On 29 October, the CMS appeals committee ruled that the explanatory note did not override the regulation requiring the cost of PMBs be covered in full.

This has implications for other PMB conditions.

“We believe that this is a landmark victory for the rights of members with PMB conditions,” said Hyman.

“Its effect will be felt across all other medical schemes.”

The CMS said in a statement that it would respect the appeals committee’s ruling, but that KeyHealth was appealing to the appeal board. 

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Attempts to reach KeyHealth by email and phone late on Monday were unsuccessful. 

Hyman said MediCheck will approach the court, where it has an ongoing case, for an urgent interim order requiring that the teenager be treated while the appeal proceeds.

Growing cost of providing PMBs

The case highlights both the lengthy appeals processes for desperately sick people and the growing cost of providing PMBs, which medical aid organisations say push up medical aid premiums.

PMBs were drawn up in 2003 to ensure people had sufficient cover through medical aids to keep them healthy.

PMBs are supposed to be fully reviewed by the regulator every two years and updated to reflect new treatments. This has not occurred. 

Unrelated to this case, both the Board of Healthcare Funders and the Health Funders Association, which represent medical aids and administrators, have in recent weeks called for PMBs to be reviewed, citing rising costs that are driving up medical aid contributions.

The CMS began reviewing PMBs in 2017, and its latest 2025/26 annual report shows the review is still underway.

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