A 15-year-old with a rare blood disorder has won a ruling that his medical aid must pay for treatment that keeps him alive. The treatment costs about R7.3 million in the first year and R6.1 million a year after that, Moneyweb reported.
On 29 October, the appeals committee of the Council for Medical Schemes (CMS) ruled in his favour. It found that the cost of prescribed minimum benefits must be covered in full.
“We believe that this is a landmark victory for the rights of members with PMB conditions,” said Mark Hyman, CEO and founder of advocacy group MediCheck. “Its effect will be felt across all other medical schemes.”
The teenager, whose identity is protected, has paroxysmal nocturnal haemoglobinuria. His need for emergency blood transfusions grew from once every 143 days to once every 13 days.
Hyman said the teen needs Ultomiris, a drug that was only registered in South Africa this year, or he will die. “If you are on the drug, you live the life of a normal human being,” he said.
His medical scheme, KeyHealth, first refused to pay for the drug. In June, after MediCheck stepped in, it offered to pay half the cost.
That offer came with conditions. The family had to move from the Equilibrium option to the top Platinum option and settle a savings shortfall. They also had to stay on the scheme for 2026 and 2027, accept clawbacks and agree to a funding review if he went to hospital.
“A prescribed minimum benefit is the same on the cheapest option as on the most expensive,” Hyman said. “If your scheme tells you otherwise, ask it to show you where the Medical Schemes Act says so.”
Speaking about the refusal and the long appeal process, Hyman said: “What the scheme is doing is killing this child.”
Hyman said KeyHealth’s audited 2025 accounts show a solvency ratio of 41.6%, above the required 25%. He said the scheme also had a surplus of R249.1 million. Medical aids are not-for-profit by law, and Hyman argued that a surplus is not needed.
Hyman became involved after the teen’s haematologist, Professor Jacques Malherbe of the University of the Free State, contacted him. Hyman also sits on the Clinical Advisory Committee of the CMS.
The CMS registrar had first ruled against the teen. The registrar said a note in the regulations meant PMB care only had to match the level offered in government hospitals. The appeals committee found that this note did not override the rule on full payment.
Under the Medical Schemes Act, PMBs for 26 chronic conditions and 271 diseases must be paid in full, whatever the cost. Groups that represent medical aids say these benefits push up premiums.
The Board of Healthcare Funders and the Health Funders Association have called for PMBs to be reviewed because of rising costs. The CMS started a review in 2017, and its 2025/26 annual report shows it is still underway.
Moneyweb was unable to reach KeyHealth by email and phone late on Monday.
The CMS said it would respect the ruling, but that KeyHealth was appealing to the appeal board. Hyman said MediCheck will ask the court for an urgent interim order so the teen is treated while the appeal goes ahead.
Source: this article is based on reporting by Moneyweb. Image: Moneyweb. Written with the help of AI and published by the Tzaneen Voice Business desk. See our Editorial Standards.
Anelisa Nkuna covers business and money news for Tzaneen Voice. Anelisa reports on the rand, fuel prices, interest rates, jobs, Eskom, Transnet, farming and company results. The aim is simple: explain what the numbers mean for household budgets, small businesses and workers in South Africa.