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.

“Financially, we are under enormous stress,” highlighted De Wet. “We are appealing the High Court order, so we don’t have to pay right away, but we still must cover the ongoing legal costs through fundraising. Our older daughter, who is seven, is a bright and loving child aware of what’s going on, and she is now scared her brother will die.

“Fortunately, a benefactor has covered Zach’s medication, but the medical aid has refused to pay even for the IV tubing, needles, syringes and other disposable medical supplies needed to deliver the enzyme replacement therapy safely and effectively. They have also refused to cover the physical and occupational therapies he needs to improve his mobility and fine motor skills.

“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 at every turn. 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.”

The RDSA remains committed to fighting for Zachary’s right to receive the treatment he desperately needs.

“We are preparing for the next phase of this legal journey and are immensely grateful for the support of donors and the wider community. Without that, we would be telling a vastly different story today,” added Du Plessis.

“At this stage, the RDSA’s legal liability is sitting at over R350 000, which continues to rise. As an organisation, we are doing everything we can to ensure Zach receives a just and fair trial and that we can provide the patient with the legal support required.”