Medicheck secure life saving victory for 15-year old, Keyhealth to pay full medical costs

CMS appeal body overrules its own Registrar: KeyHealth must pay in full for boy’s life-saving medicine

The scheme had offered to pay half, provided the family moved to a more expensive option and stayed on the scheme for two years.

JOHANNESBURG, 02 November 2026 - 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.”

About MediCheck

MediCheck (“Keeping Your Medical Aid Honest”) is a South African Medical Scheme member advocacy practice based in Johannesburg, a division of Bermar Holdings 2018 (Pty) Ltd. It helps members and their treating healthcare professionals secure the benefits to which members are entitled under the Medical Schemes Act and its Regulations. Mark Hyman, its Founder and CEO, is a Full Voting Member of the Clinical Advisory Committee of the Council for Medical Schemes and has more than four decades’ experience across retail pharmacy, managed care, claims adjudication and member advocacy.

Media contact

Mark Hyman, Founder and CEO, MediCheck

Mobile 084 895 2989  |  Office 011 443 1184

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Available for radio, television and print interviews.

Notes to editors

Please do not identify the child. He is a minor, and section 28(2) of the Constitution makes his best interests paramount. MediCheck asks that media do not publish his name, his family’s names, his school, or his town or province in combination with his age.

Scope. The Committee confined its determination to the facts and evidence of this beneficiary.

The hearing. The appeal under section 48(1) of the Medical Schemes Act 131 of 1998 was heard on 12 and 13 October 2026 before a panel chaired by Adv T Maphike. The ruling was delivered on 29 October 2026.

PNH. Paroxysmal nocturnal haemoglobinuria (ICD-10 D59.5) is an ultra-rare, acquired disorder in which the body’s complement system destroys red blood cells. The Committee recorded an incidence of one to two cases per million people. Ravulizumab is a long-acting complement inhibitor given every eight weeks. It was common cause that PNH is a listed PMB condition under DTP 113S.

Further findings the Committee recorded. That transfusions and iron therapy had been ineffective and harmful for this child, meeting the threshold for an exception under Regulation 15H(c); that the 50% limit and option upgrade conflicted with Regulation 8 and with Regulation 10(6), which protects medical savings from use for PMB costs; that KeyHealth conceded no designated service provider arrangement under Regulation 8(2) had been invoked; and that the child’s best interests under section 28(2) of the Constitution and section 9 of the Children’s Act 38 of 2005 were of paramount importance.

Cost. Ravulizumab (Ultomiris) has a Single Exit Price of R310,742.92 per 1,100 mg vial (Department of Health Database of Medicine Prices, effective 1 October 2026). On the dosing basis set out in the court papers, treatment costs R7,288,334 in the first year and R6,080,295 a year in maintenance. Actual cost depends on body weight.

The family has never been able to afford the medicine and has never bought it. PNH is ultra-rare: on published prevalence figures, a scheme of KeyHealth’s size would expect no more than one or two members with the condition, against an audited 2025 surplus of R249.1 million.

Legislative framework. Section 29(1)(o) of the Medical Schemes Act requires scheme rules to provide for “the scope and level of minimum benefits that are to be available to beneficiaries as may be prescribed”. Regulation 15H(c) requires managed care protocols to “provide for appropriate exceptions where a protocol has been ineffective or causes or would cause harm to a beneficiary, without penalty to that beneficiary”. Regulation 8(1) of GN R1262 provides that “any benefit option that is offered by a medical scheme must pay in full, without co-payment or the use of deductibles, the diagnosis, treatment and care costs of the prescribed minimum benefit conditions.” Authorities relied on include Council for Medical Schemes v Genesis Medical Scheme [2015] ZASCA 161 and Genesis Medical Scheme v Registrar of Medical Schemes 2017 (6) SA 1 (CC).