KeyHealth Medical Scheme intends to appeal a ruling ordering it to fund a 15-year-old beneficiary’s treatment for a rare blood disorder in full.
MediCheck, which represented the teenager, has called the decision a landmark victory for members with Prescribed Minimum Benefit (PMB) conditions. It says the ruling confirms that schemes cannot refuse prescribed treatment simply because it is not routinely provided in the public sector.
The CMS Appeals Committee stressed, however, that its decision was specific to this case and does not establish a general rule for other disputes.
The Council for Medical Schemes (CMS) confirmed on 2 November that it had received correspondence from KeyHealth indicating its intention to appeal. Under section 50(3) of the Medical Schemes Act, an aggrieved party may appeal a Council decision to the Appeal Board within 60 days of receiving the ruling.
Delivered on 29 October, the ruling set aside the Registrar’s decision of 3 August, which had upheld KeyHealth’s refusal to fund ravulizumab (Ultomiris) for the teenager’s paroxysmal nocturnal haemoglobinuria (PNH). The Appeals Committee ordered KeyHealth to authorise and fund the medicine in full as a PMB, without requiring the family to upgrade its option or pay co-payments, deductibles or amounts from medical savings.
The order took effect immediately. It also directs KeyHealth to take account of applicable third-party patient-assistance funding, including support from the Alexion Charitable Immunotherapy Foundation.
A section 50 appeal to the Appeal Board generally suspends the decision while the appeal is pending. If filed, the appeal could delay implementation of the funding order.
Why the Registrar’s decision was overturned
PNH is a listed Prescribed Minimum Benefit (PMB) condition.
According to findings from the International PNH Registry published in Haematologica, PNH is a rare blood disorder where premature red blood cell destruction causes severe anaemia – leaving 80% of patients exhausted and 64% short of breath – while posing a constant risk of dangerous blood clots and organ damage such as kidney impairment.
Patients in South Africa diagnosed with PNH face an average treatment cost for ravulizumab of approximately R7.3 million ZAR during their first year of therapy, which includes initial loading and maintenance infusions. According to recent pharmacoeconomic data, annual costs drop to roughly R6.1 million ZAR per patient in subsequent years for ongoing maintenance.
According to clinical and regulatory records, the high cost of this second-generation monoclonal antibody reflects its specialised molecular engineering, which provides an extended elimination half-life of 49.7 days and reduces dosing frequency to once every eight weeks.
The dispute before the Appeals Committee was whether ravulizumab qualified as PMB-level care for the teenager.
KeyHealth argued that the medicine was not on the public-sector Essential Medicines List and was not routinely provided in public hospitals. The Registrar accepted that argument, relying on an explanatory note linking the level of PMB care to public-sector practice.
The Appeals Committee found that the note could not override Regulation 8(1), which requires schemes to fund the diagnosis, treatment and care of PMB conditions in full. The ruling states: “Subordinate interpretive notes and resource constraints in the public health sector cannot be elevated into binding exclusions”.
The Committee also considered whether KeyHealth had offered a clinically sound alternative under the teenager’s Equilibrium option. It found that the supportive care proposed by the scheme, including blood transfusions and iron therapy, had failed to control the condition. The teenager’s health had deteriorated, and the treatment had caused physical harm. The Committee concluded that KeyHealth had not shown the proposed care was an “effective, evidence-based alternative” for this patient.
Regulation 15H(c) requires an exception without financial penalty when standard treatment is ineffective or causes harm. The Committee found that the circumstances met that threshold.
KeyHealth had offered to fund 50% of the medicine’s cost if the family upgraded to Platinum and accepted conditions including a two-year lock-in, settlement of medical savings deficits, possible clawbacks and reassessment if the teenager was hospitalised. The Committee found that KeyHealth had not established a valid, evidence-based disease-modifying treatment pathway within Equilibrium and rejected the conditions as inconsistent with the scheme’s PMB obligations.
The Committee also considered the constitutional requirement to give paramount importance to the child’s best interests. It set aside the Registrar’s decision and ordered full funding in this case.
The CMS said it respects the decision but cannot comment on its implications while the ruling is subject to appeal.
The treatment dispute
The teenager was diagnosed with PNH in July 2022. His treating haematologist, Professor Jacques Malherbe of the University of the Free State, reported that his condition had worsened despite supportive care.
The ruling records haemoglobin levels as low as 5.7 g/dL and emergency blood transfusions. The intervals between crises shortened from 143 days to 23 days and then 13 days.
KeyHealth declined funding on 28 May 2026. In June, it offered to fund half the cost if the family moved from Equilibrium to Platinum. The family sought assistance with the remaining amount, but the scheme did not accept the proposed arrangement.
MediCheck chief executive Mark Hyman said the decision was important for members who are told that PMB cover depends on which option they belong to.
“A Prescribed Minimum Benefit is the same on the cheapest option as on the most expensive,” he said. “If your scheme tells you otherwise, ask it to show you where the Act says so.”
The ruling does not mean that every medicine prescribed for a PMB condition must automatically be funded in every case. The Committee’s decision turned on the clinical evidence and legal requirements before it.
Moonstone approached KeyHealth for comment, but no feedback had been received by the time of publication.
Read the full KeyHealth ruling here.
