A 15-year-old KeyHealth beneficiary with paroxysmal nocturnal haemoglobinuria (PNH), a rare blood disorder, has won his appeal for full funding of ravulizumab (Ultomiris), the medicine prescribed by his haematologist, Professor Jacques Malherbe of the University of the Free State, and which the CMS’s own Clinical Review Committee recognised as first-line treatment for symptomatic PNH, after the Council for Medical Schemes’ own Appeals Committee overruled the CMS Registrar.

 

In a ruling delivered on 29 October 2026, the Committee set aside the Registrar’s decision of 3 August, which had backed KeyHealth, and directed the scheme to fund the treatment in full as a Prescribed Minimum Benefit (PMB). KeyHealth may not require an option upgrade, a co-payment, a deductible or the use of the family’s medical savings.

 

The boy had needed emergency blood transfusions with increasing frequency, the gap between hospital admissions shortening from 143 days to 23 and then 13. KeyHealth refused funding outright on 28 May 2026. Only after MediCheck intervened did it offer, in June, to fund half the cost, on condition that the family moved from the Equilibrium option to Platinum, settled savings deficits, stayed on the scheme for 2026 and 2027, accepted clawbacks and agreed to a review of funding if he was admitted to hospital. KeyHealth’s audited 2025 accounts show a solvency ratio of 41.6% and a surplus of R249.1 million. At the official price, ravulizumab costs about R7.3 million in the first year and R6.1 million a year after that. The family has never been able to afford it and has never bought it.

The Registrar’s ruling rested on Explanatory Note 2 to Annexure A of the Regulations under the Medical Schemes Act, which links the PMB level of care to public-sector practice. Annexure A has not been substantially reviewed since 2003, and ravulizumab was only registered by the South African Health Products Regulatory Authority (SAHPRA) in May 2026. The Committee rejected that approach, finding that an explanatory note cannot override a scheme’s duty under Regulation 8(1) to pay for PMB conditions in full. KeyHealth could therefore not refuse the medicine on the ground that the state does not provide it, a test drawn from an outdated Annexure A. It also recorded that transfusions and iron therapy had failed him, meeting the test for a penalty-free exception under Regulation 15H(c). Professor Malherbe gave expert evidence for the family, by affidavit in the High Court and at the Appeals Committee’s virtual hearing.

“We believe that this is a landmark victory for the rights of members with PMB conditions,” said Mark Hyman, Founder and CEO of MediCheck, who argued the appeal on 12 and 13 October with Advocate Craig Snoyman, instructed by Magna Carta Centre for Human Rights. “It is a victory of substance over form, and its effect will be felt across all other Medical Schemes. We extend our best wishes to the minor and his family.”

The order took effect immediately. At the time of this release, neither KeyHealth nor the Registrar had complied with it, and the boy continues to suffer severe haemolysis. MediCheck and the family’s attorneys, Magna Carta Centre for Human Rights, will now return to the High Court, Gauteng Division, Pretoria, to apply to have the ruling enforced.

“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 Act says so.”