De Wet family wins legal battle

Parents often consider their children their world and would go to the ends of the earth for their children.

This was proved by Jacques and Michaney de Wet who together with Rare Diseases South Africa (RDSA) won the legal battle against Medihelp Medical Scheme.

A legal battle was won on August 26 by Rare Diseases South Africa (RDSA) NPC against Medihelp who refused to approve Zachary de Wet’s (3) treatment as a prescribed minimum benefit (PMB).

RDSA filed a court application earlier this year seeking to compel the fund to pay for the toddler’s medication, Elaprase, which is required for treatment of his condition under PMB.

Pretoria High Court reserved judgement in the case between Medihelp and RDSA regarding Zach’s treatment on August 23.It was stated during the court proceedings on August 23 that the judge should deliver a verdict by the end of the week or provide reasons why a verdict cannot be delivered immediately.

Medihelp to pay

The Pretoria High Court declared Zach’s condition as a PMB condition under the category 901K as listed in annexure A of the Regulations of the Medical Schemes Act, 131 of 1998.

The court also ordered Medihelp to carry the treatment and care costs of all medical interventions required by Zach and prescribed by his treating practitioners for Hunters Syndrome MPII as PMB level of care, which treatment includes inter alia Elaprase, a registered enzyme replacement therapy, within 30 days of this order.

Medihelp also has to pay accounts and claims for healthcare services rendered by the treating practitioners within 30 days of presentation of the account or claim thereof, in accordance with regulation 6 of the Medical Schemes Act, 131 of 1998.

The medical scheme has also been ordered to pay the costs of the application to date.

Winning the fight

“We are speechless and so overwhelmed with emotions. Thank you is not the word to describe our feeling towards the incredible RDSA NPC,” said Jacques and Michaney.

“We are very grateful that the judge did hear our case and of course, there was always a chance it could be thrown out, but we kept on hoping for the best.”

During a previous interview with the Alberton Record his parents, Jacques and Michaney, said that they will do anything for their son, but they also want to create awareness of the disease. “We want to help others and inspire them to keep on fighting,” said Michaney.

Due to the nature of his disease, Zach regularly visits his team of specialists, including a neurologist, cardiologist, pulmonologist, opthalmologist and occupational therapist, all of whom are supportive of Zach receiving enzyme replacement therapy to treat his condition.

During this time of trying to get medical aid approval, two of Zach’s heart valves have thickened and valve leaks have been detected, meaning the valve doesn’t close completely.

This makes him more vulnerable to bacterial infections. Zach’s liver has also already enlarged at this stage.

The way forward

Since Zach’s treatment has been approved, he will begin it as soon as possible. In Zach’s case, Elaprase is the first and only treatment that has been approved to slow or even stop the progressive degenerative symptoms that accompany the rare disease.

“I am filled with hope knowing that there is a treatment available to alleviate my son’s health complications and prevent further progression.”

Therapy helps to manage the condition appropriately, prevent further deterioration and reduce mortality.
Rare Diseases South Africa, an NPO dedicated to improving the quality of life of people with rare diseases and congenital abnormalities, assisted the de Wet’s.

“We have received amazing and helpful support from this organisation, including knowledge and advocacy support to pursue this matter further,” said Jacques.

“Their support has been invaluable throughout the process, and we are forever grateful.”

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