It’s been 2 years since Rare Diseases South Africa (RDSA) launched a case in the Pretoria High Court on behalf of Zachary de Wet, at that stage, a 2-year-old boy who had been diagnosed with a rare condition known as Hunter Syndrome.
Zach urgently needed access to medication, known as Elaprase, which is an Enzyme Replacement Therapy. This treatment is expensive, but it is also lifesaving, and life changing. As this condition is a Prescribed Minimum Benefit, we assisted the family in applying to Zach’s medical aid, for his treatment to be approved, in line with PMB regulations. Essentially, this medication provides an artificial form of the enzyme that Zach’s body doesn’t make on its own, which then slows down the progression of the disease, and allows Zach’s body to function better whilst on treatment.
Unfortunately, the medical aid didn’t approve this request, and so the #FightForZach started.
RDSA approached the High Court on a two-part basis: first, for an urgent interdict, to force the medical scheme to pay for Zach’s medication (Part A) whilst RDSA laid a formal complaint at Council for Medical Schemes (CMS) who is essentially the medical aid ombudsmen / regulator (Part B. )In our experience, the complaint’s process can take in excess of 3 years to finalize, and we knew, that Zach didn’t have the 3 years, should treatment not have been started.
The interdict was granted in favour of RDSA, (Part A) and RDSA proceeded to lay the section 47 complaint at CMS (Part B ). Unfortunately, the Section 47 complaint did not go our way, and CMS ruled against us, and in favor of the scheme not having to pay for Zach’s treatment. This ruling is in complete contradiction to every other ruling RDSA has had for Enzyme Replacement Therapy within SA, since our inception in 2011.
According to the CMS complaints process, there are essentially 3 levels to a complaint of this nature:
1) A section 47 complaint whereby the Registrar makes a ruling (as per above, this decision went against us).
2) Section 48 appeal – which is essentially an appeal of the registrar’s ruling and is heard before the Appeals Board of CMS.
3) Section 50 appeal – heard before an independent Judge nominated by the Minister of Health, and ultimately a review of a Section 48 decision.
Upon receiving the Section 47 ruling against us, RDSA immediately sought to lodge a Section 48 Appeal against the Registrar’s decision, as part of the complaint process. As is the case with any legal process, if there is an appeal at play, the decision being appealed is pended, until finalization of the appeal.
During this time, the medical scheme decided to stop funding Zach’s treatment (which they had now only done for a few weeks), stating that since CMS had made a ruling, they were no longer obligated to pay according to the Part A Court order.
RDSA again went back to the high court, seeking an enforcement of the high court order previously granted, as the CMS process, was still underway, pending the Section 47 decision ruling, resulting in the high court order still being in effect. Once again, the Judge ruled in our favour and instructed the scheme to continue to fund treatment for Zachary whilst Part B continued.
The Medical Scheme, unhappy with this outcome, then applied for leave to appeal, for the enforcement of the High Court order, which was denied. Upon this, the Medical Scheme petitioned the decision to the Supreme Court of Appeal, requesting a review of the enforcement, of the interdict. (It gets confusing, and we apologize). The SCA decided the matter on papers, referring the decision be reviewed by a full bench, which will now be heard on the 6th November 2024.
Essentially, this left Zach without access to any treatment as similarly to how the decision in Part B was pended subject to our appeal of the Section 47 complaint, the Scheme’s appeal of the high court enforcement, pends the enforcement of the high court order.
PART B
The RDSA appeal at CMS was initially heard in August 2023, a full 12 months after we started this entire process. The hearing then continued in October 2023, with RDSA having fully presented our arguments. Unfortunately, the case was not fully heard, due to a variety of legal objections and processes, (which saw decisions being appealed within an appeal) and due to the CMS Appeals Board reaching the end of their term, this Appeal now needs to be heard, de novo (from the beginning), before a newly elected Appeals Board.
Whilst we are grateful to now have a set time to have this matter heard, being next week 2-6th September, it has been a grueling and agonizing 2 years to get back to this point.
During this time, the medical scheme has continued to deny funding of Zach’s treatment, and Zach is solely reliant on the generosity of a corporate donation programme which is currently funding his treatment, in the interim.
Zach’s family continues to fundraise for all the out of hospital costs for the treatments to be administered, as this is not covered by the donor programme, as well as his associated therapy, etc etc.
Our legal costs on this matter continue to rise, as does the emotional toll for all involved as we continue to fight for this little boy. With very little reprieve expected in the future, and seeing our opponent’s appetite for a protracted legal battle, right to the bitter end, we try and remain steadfast in our #FightForZach.
For those who have donated to our Legal Fund, we thank you for your support. We could not have gotten this far without you.
For those willing to support us in this journey, your support is not only appreciated, but necessary.
To quote the African Proverb: “If you want to go quick, to alone. If you want to go far, go together.”
We ask that you please keep Zach, his family, and our legal team in your thoughts and prayers, as we prepare for the next leg of this marathon. For any further updates, or to make a donation towards this matter, please do not hesitate to reach out to Sumaya at support@rarediseases.co.za
Bank Details for donations:
Rare Diseases South Africa
FNB
Branch: Fourways
branch Code: 251655
Acc No: Fundraising account
Acc no: 625 625 85532
Ref: Legal
Comments