It has been three years since the NPO Rare Diseases South Africa (RDSA) initiated a legal case in the Pretoria High Court on behalf of Zachary de Wet, affectionately called Zach.

Zach is a young boy diagnosed with a rare condition known as Hunter Syndrome, and he requires urgent and ongoing medical treatment. It has sparked a prolonged legal battle with the family’s medical aid provider.

Understanding Hunter Syndrome

Hunter Syndrome is a rare genetic disorder that mostly affects boys. The occurs when the body lacks an enzyme needed to break down certain complex sugars.

Over time, a build-up of sugars can cause issues in the heart, lungs, and brain, leading to severe complications in physical and mental development.

The symptoms can include delayed growth, cognitive impairment, joint stiffness, and changes in facial features.

The disease progressively worsens without proper treatment, but treatment can help manage the symptoms and improve quality of life. Unfortunately, there is no cure.

The path that brought them here

In urgent proceedings on August 26, 2022, Judge Millar granted relief in Zachary’s favour (the “Millar Order”).

After a section 47 ruling by the Council for Medical Schemes on December 2, 2022, the payment dispute reignited, and RDSA returned to court.

A second urgent application was argued on December 21, 2022, with Judge Munzhelele delivering judgment on December 28, 2022. Leave to appeal from that stage was refused by the High Court on January 20, 2023, and later petitioned. The SCA granted leave to appeal, and a full-bench appeal was ultimately enrolled.

On October 25, 2024, on the eve of that appeal being heard, Medihelp launched a separate reconsideration application focused on the Millar Order. That application is now set for a hearing this week.

Through each turn, Zachary’s medical needs have remained the same. Rare disease care is time-sensitive. Missed interventions and interrupted support can mean lost function that does not return.

Zach’s case returns to court

On October 20, Zachary’s family and RDSA were in the Gauteng High Court, Pretoria, for Medihelp Medical Scheme’s reconsideration application. It was another step in a journey that has asked too much of a little boy and his mother and of a community that has stood with them.

“We have spent a few years learning new words for hope,” said the CEO of RDSA, Kelly du Plessis.
“Court orders. Appeals. Reconsiderations. Behind each of those words is a child who just wants to run free at break time and keep up with his friends.”

What this means for one child and many others

While this matter is about Zachary, the reality is that it is also about the thousands of South Africans living with rare conditions who meet rules and rejections long before they meet relief.

RDSA’s role is to stand with them, navigate the system, and, when necessary, ask the courts to uphold the rights that protect all of us.

Clarity on Judge Swanepoel’s order

Zach’s family and RDSA have expressed concern over a media statement apparently issued by Medihelp Medical Scheme and published on the website of Moonstone Information Refinery.

They said the statement misrepresented the recent Pretoria High Court judgment in the De Wet v Medihelp case.

Medihelp’s statement claimed that Judge Swanepoel’s ruling found that the scheme is not required to fund the cost of Zachary’s Elaprase treatment. It also stated that the court’s order meant Medihelp “need not fund”

Elaprase, and that this was in line with the findings of the Appeals Committee of the Council for Medical Schemes.
According to the family and RDSA, these claims are factually incorrect and misleading.

In his judgment, Judge Swanepoel dismissed Medihelp’s attempt to discharge an earlier order made on August 26, 2022, by Judge Millar. Judge Millar’s order clearly required Medihelp to authorise the treatment and care costs of all medical interventions prescribed for Zachary’s Hunter Syndrome (MPS II) as Prescribed Minimum Benefit (PMB) care. This expressly included Elaprase.

Judge Swanepoel described Medihelp’s arguments as astounding, frivolous, without merit, and exceedingly cynical. He granted the counter-application brought by Zachary and RDSA a, declaring Medihelp to be in contempt of court for failing to comply with Judge Millar’s order.

Paragraphs 44.2 and 44.3 of Judge Swanepoel’s order state that Medihelp is in contempt of the 2022 order and that the scheme must purge this contempt by complying fully with Judge Millar’s order, except in relation to the cost of the Elaprase itself.

In his supporting judgment, Judge Swanepoel found that Medihelp’s explanation for its non-compliance does not hold water and that the scheme had taken the view that it would not fund treatment for Zachary despite being ordered to do so.

He said Medihelp’s conduct was “mala fide”, noting that the scheme had initially refused to provide Elaprase and later even refused to fund the cost of administering the medicine or other treatments associated with MPS II.

Judge Swanepoel also found that Medihelp had refused to fund treatments such as speech and occupational therapy, despite knowing that these were PMB-level treatments for MPS II and that it was obliged to pay for them.

He stated that Medihelp had provided contradictory explanations and had brought its discharge application on the most spurious grounds.

Judge Millar’s and Judge Swanepoel’s orders remain unchanged

The family explained that the court did not find that Medihelp is required to fund Elaprase.

Instead, the judgment confirmed that the scheme is required to do so because Judge Millar’s order remains in force.

The reason paragraph 44.3 does not compel Medihelp at this stage to fund the cost of Elaprase itself is simply that Zachary’s legal team did not request that specific relief.

Zachary is currently receiving Elaprase through a compassionate donation programme (ICAP) until his legal challenge is concluded.

These donations are being made on an exceptional basis because Medihelp has refused to comply with Judge Millar’s order.

The family also noted that the Appeals Committee of the Council for Medical Schemes ruled on June 30, 2025, that Medihelp is legally required to fund Elaprase for MPS II as PMB care. However, the committee chose not to insist on immediate compliance because Medihelp’s solvency ratio is below the statutory minimum threshold.

This decision is being appealed to the CMS Board by Medihelp, but also by Zachary’s family and RDSA.

Until the appeal is finalised, the family stresses that the effect of both Judge Millar’s and Judge Swanepoel’s orders remains unchanged: Medihelp must authorise the treatment and care costs of all medical interventions required for Zachary’s MPS II as PMB-level care, including Elaprase.

Impact on Zach and his family

This case has stretched over four years and thousands of pages. While many aspects of this matter have been done pro bono, legal disbursements and other costs are still payable.

RDSA has been fundraising daily so that families like the De Wets are not alone. Community support keeps this work going and ensures that they can continue giving these patients a voice.

“We are asking for something simple,” Du Plessis added. “Let a child be a child. Help us make sure that care arrives when needed, not only when it is litigated.”

“We are devastated that, despite the clear medical necessity and the undeniable impact on Zach’s quality of life, the system continues to fail him. It is heartbreaking to watch our child suffer, knowing there is a treatment available, but the medical aid fund is choosing to fight relentless legal battles that cost them more than his treatment,” said the De Wet family.