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CMS faces court action after refusal to pay child’s rare disease treatment

An urgent application has been filed against the Council of Medical Schemes (CMS) by the mother of a three-year-old boy to appeal a refusal by her medical aid to pay for the treatment of his rare disease despite a previous court order compelling it to cover the costs.

In August last year, Zachary de Wet’s mother, Michaney, won a court battle in the Gauteng High Court against Medihelp Medical Scheme to pay for Elaprase, an enzyme-replacement therapy that is the only registered treatment for his condition, Hunter syndrome, in South Africa.

News24 reports that in granting the interim order, Judge Anthony Millar had directed that Medihelp pay for the treatment, pending the outcome of the CMS’ findings.

De Wet approached the High Court after the medical aid had twice declined to pay for the treatment. She said her son has been receiving an infusion every Friday until a week ago, when Medihelp retracted its authorisation after the CMS ruling.

The application to the CMS was filed on 21 September, and on 2 December, the CMS registrar ruled that Elaprase did not constitute PMB level of care for Zachary’s condition and, as such, Medihelp was not required to pay for the treatment.

The CMS further found that there was no current effective cure for Hunter syndrome. “Elaprase has been shown to improve walking ability in patients five years and older. In patients (from) 16 months to five years, Elaprase did not show improvements in disease-related symptoms or long-term clinical results.”

Hunter Syndrome is a rare, inherited disorder in which the body does not properly digest (break down) sugar molecules in the body. When these molecules build up in organs and tissues over time, they can cause damage that affects physical and mental development and abilities. The disorder almost always occurs in boys.

De Wet said she received a call from the distributing pharmacy on 6 December informing her that there were “new developments” and that MediHelp would no longer be funding the treatment.

She notified Medihelp and the CMS on the same day of her intention to appeal the decision of the registrar. The appeal was formally lodged on 12 December.

In court papers, De Wet said that during 2022, Medihelp – of which she has been a member for more than 10 years – refused to pay for his treatment. She said she was left with no choice but to approach the court.

News24 previously reported that in citing its reasons, Medihelp said the disease was not registered as a prescribed minimum benefit (PMB) and that De Wet’s plan did not cover “chronic medication” or treatment such as Elaprase.

De Wet argued that if the treatment were given to her son early enough, it might delay or prevent some of the symptoms of Hunter syndrome.

Advocacy group Rare Diseases South Africa supported the mother in her High Court application.

News24 article – Mom takes medical scheme to court for refusing to pay for treatment for child's rare disease (Open access)


See more from MedicalBrief archives:


Judge orders medical aid to pay for boy’s expensive medication


Ill child’s parents sue medical aid over drug for rare disease


Med schemes not delivering value for money, say members







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