Pretoria - A three-year-old boy who has been diagnosed with a rare Hunter syndrome MPS II condition has been given a lifeline by the Gauteng High Court, Pretoria.
The court issued an urgent order for Medihelp Medical Scheme to pay for treatment in this regard, including the medicine known as Elaprase.
Judge Anthony Millar ordered that Hunter syndrome MPS II be declared a prescribed minimum benefit and that the medical scheme had to carry the costs for this treatment.
This is pending the outcome of a complaint the child’s mother had lodged with the Council for Medical Schemes against the refusal of her medical aid – of which she has been a member for 10 years – to pay.
This body must finally decide whether MPS II should be declared a prescribed minimum benefit condition which will force Medihelp to pay for the medication in future.
This condition is a rare inherited genetic disorder and has only one registered treatment in the country, an enzyme replacement therapy, Elaprase.
If left untreated it results in bodily damage and developmental difficulties. It affect only one in every 100 000, the court was told.
The child, identified as Z as he is a minor, was diagnosed with this condition a year ago. It was not disputed by the medical aid that MPS 11, being a genetic condition, was incurable.
Elaprase is the first and only registered treatment that became available in the country, and has been shown to be an effective treatment that can slow or even halt the progressive degenerative consequences which would ensue if left untreated with this drug.
The court was told there was no other treatment available with the efficacy of Elaprase, and doctors said it was an essential part of Z’s treatment.
A request for authorisation by Medihelp to pay for the treatment submitted in July 2021 was declined.
His condition at that stage was relatively stable, but to be assessed every six months.
Medihelp cited a number of reasons why it was not prepared to authorise payment for Elaprase. These included that treatment of MPS II was not a registered prescribed minimum benefit. It said even if it were a prescribed minimum benefit condition, the treatment with Elaprase was not available in the public health service and was thus not a prescribed minimum benefit.
The medical scheme further said that the benefit plan on which the mother and son were did not cover treatment with medications of the nature of Elaprase.
The Council for Medical Schemes had dealt with a similar matter last year, involving a different medical aid. The parents in that matter won their case, and Z’s mother, armed with this, again requested Medihelp to pay for her son’s treatment. She was once again rejected.
The mother turned to the court for an urgent application to assist her in the interim, as the council said it would take between one and two years before they may have an outcome to her son’s plight.
It said it sat twice a month and had many matters to decide on.
Doctors this year said Z’s condition was deteriorating and he urgently needed the treatment.
The mother was assisted in her bid to the court by Rare Diseases South, a non-profit organisation which advocates for and assists the interests of persons with rare diseases.
Judge Millar said both the mother and the organisation had established that the use of Elaprase was a prevailing and predominant public hospital practice for this rare condition.
“The deterioration in Z’s condition over the last few months means that if he is not afforded treatment with Elaprase, his life and quality of life will be irreparably adversely affected.
“The applicants have met the requirements for the granting of the interim relief sought,” the judge said.
Pretoria News