Johannesburg – Denied lifesaving treatment by their medical aid, the De Wet family is continuing its fight against “bureaucratic injustice” to access the necessary medication to help their son survive a rare disease.
It has been two years since the non-profit organisation, Rare Diseases South Africa (RDSA), initiated a legal case in the Pretoria High Court on behalf of Zachary de Wet, a young boy diagnosed with the rare condition known as Hunter Syndrome.
The rare genetic disorder, which mostly affects boys, happens because the body is missing an enzyme needed to break down certain complex sugars.
Over time, the buildup of sugars can cause issues in the heart, lungs, and brain, leading to severe complications in physical and mental development.
Zach, as he is affectionately called, requires urgent and ongoing medical treatment, which 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,” Kelly du Plessis, Founder and CEO of RDSA said on Wednesday, (4 September 2024).
“Due to lengthy, costly legal processes combined with administrative delays, we will only now, in the course of this week, proceed with our appeal for Zach to receive his treatment.”
The matter is being heard this week.
Without proper treatment, the disease progressively worsens, but treatments can help manage the symptoms and improve quality of life.
Unfortunately, there is no cure.
The legal journey
In 2022, at just two years old, Zachary urgently needed access to a medication known as Elaprase, an Enzyme Replacement Therapy (ERT).
This treatment is both lifesaving and life-changing as it provides the enzyme that Zachary’s body cannot produce on its own, slowing the progression of the disease and helping his body to function better.
Given that Hunter Syndrome is recognised as a Prescribed Minimum Benefit (PMB) under South African law, RDSA assisted Zachary’s family in applying 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 start of the #FightForZach campaign.
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 South Africa (Part B).
The interdict was granted in RDSA’s favour, and Zachary’s treatment began.
However, the CMS ruled in favour of the medical scheme, which then took the decision to stop funding the treatment despite the ruling being appealed.
“This has been a brutally challenging journey filled with uncertainty,” said Zachary’s father, Jacques de Wet.
“During legal proceedings, we’ve 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 aid scheme in the understanding that if there was 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
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 Zachary’s treatment, citing the CMS decision as justification despite the ongoing legal challenge.
In response, RDSA returned to the High Court to enforce the original interdict, ensuring Zach’s treatment would continue while the legal process unfolded.
The Judge ruled in favour of RDSA once again, but the medical scheme then 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 6 November 2024.
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 the case to be reheard from the beginning by a newly elected board.
Impact on Zachary and his family
Throughout this prolonged legal battle, Zachary has been reliant 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,” said De Wet.
“We are currently 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 who is aware of what’s going on, and she is now scared that her brother will die.
“Fortunately, Zach’s medication has been covered by a benefactor, 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’s 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 are costing them more than his treatment.”
RDSA said it remains committed to fighting for Zach’s right to receive the treatment he desperately needs.
“We are preparing for the next phase of this legal journey, and we are immensely grateful for the support of donors and the wider community,” said Du Plessis.
“Without that, we would be telling a vastly different story today.”
“At this stage, RDSA legal liability is sitting at over R350 000, which continues to rise.
“As an organisation, we are doing everything we can to ensure that Zach receives a just and fair trial and that we are able to provide the patient with the legal support required.”
