Alberton Record
The legal battle for little Zach’s lifesaving treatment continues
It has been two 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’.
Zack 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.
“It has been a long and ongoing process to get back to this point. Due to lengthy, costly legal processes combined with administrative delays, we are only now, in September, proceeding with our appeal for Zach to receive his treatment,” said the founder and CEO of the RDSA, Kelly du Plessis.
Understanding Hunter syndrome
Hunter syndrome is a rare genetic disorder mostly affecting boys. It happens because the body lacks an enzyme needed to break down certain complex sugars. Over time, the 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 the quality of life. Unfortunately, there is no cure.
The legal journey
In 2022, at just two years old, Zach urgently needed access to medication called Elaprase, an enzyme replacement therapy. This treatment is lifesaving and life-changing because it provides the enzyme his body cannot produce on its own, slowing the disease’s progression and helping his body function better.
Given that Hunter syndrome is recognised as a prescribed minimum benefit (PMB) under SA law, the RDSA helped Zachary’s family apply to his medical aid for approval of this crucial treatment. Despite the clear need and legal backing, the medical aid provider refused the request, prompting the #FightForZach campaign’s start.
The RDSA approached the high court on a two-part basis: first, to secure an urgent interdict forcing the medical scheme to pay for Zachary’s medication (part A), and second, to lodge a formal complaint with the Council for Medical Schemes (CMS), the regulatory body for medical aids in SA (part B).
The interdict was granted in the RDSA’s favour, and Zach’s treatment began. However, the CMS ruled in favour of the medical scheme, which then stopped funding his treatment despite the ruling being appealed.
“This has been a brutally challenging journey filled with uncertainty,” shared Zachary’s father, Jacques de Wet.
“During the legal proceedings, we have faced accusations of being negligent parents because we chose to go to court rather than take Zach to a public hospital.
“We joined a medical scheme with the understanding that if there were a catastrophic medical need, we would have cover. We’ve also been told ‘Zach isn’t dying today’, and there are other more urgent daily health concerns that must be prioritised. While we appreciate that, Zach cannot wait; without ongoing treatment, he will die.”
Ongoing legal struggles
The RDSA immediately appealed the CMS ruling under Section 48, which allows for an appeal to the CMS Appeals Board. However, during the appeal process, the medical scheme ceased funding Zach’s treatment, citing the CMS decision as justification despite the ongoing legal challenge.
In response, the RDSA returned to the High Court to enforce the original interdict, ensuring Zach’s treatment would continue while the legal process unfolded. The judge again ruled in favour of the RDSA, but the medical scheme sought to appeal this enforcement.
The matter has now escalated to the Supreme Court of Appeal (SCA), where a full bench will review the case on November 6.
In parallel, the CMS appeal process has faced its own delays. After a full year of legal objections and procedural complications, the original appeals board’s term ended, requiring a newly elected board to rehear the case from the beginning. This hearing was scheduled for September 2 to 6, 2024.
Impact on Zachary and his family
Throughout this prolonged legal battle, Zachary has relied on the generosity of a corporate donor to fund his treatment. His family continues to bear the financial burden of out-of-hospital costs, including the administration of therapies and other associated expenses.
The ongoing legal fees and emotional toll have been significant, with no immediate resolution in sight.
“Financial
