Rare disease funding is under scrutiny after the Council for Medical Schemes (CMS) Appeals Committee ordered KeyHealth to cover a teenager’s treatment in full. The Board of Healthcare Funders (BHF) says the case shows why schemes need a way to share the cost of exceptionally expensive treatments.
The 15-year-old has paroxysmal nocturnal haemoglobinuria, a rare blood disorder. Treatment with AstraZeneca’s Ultomiris (ravulizumab) is expected to cost about R7.3m in the first year and R6.1m annually thereafter.