Boy’s incurable disease: Medical aid won’t pay and treatment costs R1.2m yearly

The parents of little Zachary de Wet are trying to buy their five-year-old son some time by slowing the progression of his incurable and rare disease called Hunter syndrome and fighting their medical aid which won’t pay for the treatment.

But the legal fight is much wider that just this family because it affects all members who have conditions covered by prescribed minimum benefits.

Fighting for treatment

A nongovernmental organisation, Rare Diseases South Africa (RDSA), has dedicated itself to fighting a legal battle with the medical aid scheme Med-Aid, which is being heard before the Council for Medical Schemes (CMS).

The hearings began again yesterday under a new board, following delays because of appeals.

CEO of RDSA Kelly du Plessis said: “There has been a lack of consistent application in law and the outcome of this matter will have a fundamental impact on all medical scheme users when it comes to prescribed minimum benefits.”

She added that the treatment is an expensive product which is why neither party is backing down in the legal fight.

“It depends on his weight and as he grows it will become more expensive, but as of now it costs about R1.2 million per year.

“We all join medical schemes so that when something catastrophic happens you’re covered.

“If I wanted the level of service in a public facility, I wouldn’t pay the premiums I pay every month.”

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Boy diagnosed at the age of two

De Wet was diagnosed with the disorder, which is common in boys, when he was two.

It kicks in when the body doesn’t properly break down certain sugar molecules.

When these molecules build up in organs and tissues over time they can cause damage that affects physical and mental development.

In severe cases, life expectancy could be as low as 10 years, although many who are afflicted live well into adulthood with treatment.

In De Wet’s case, his symptoms are speech underdevelopment, issues with his eyesight, enlarged liver and kidney and claw hands, which means they bend inwards like his knees and shoulders.

His mother, Michaney de Wet, said the family has been under huge emotional and financial stress fighting with the medical aid scheme.

“It gets tiring. We are constantly fundraising because he needs this treatment,” she said.

She added that the medication has improved his condition, “Medicine is always evolving and in five years’ time he could need a different kind of treatment which could be cheaper.

“Without treatment the danger is irreparable, so if his heart or lungs are damaged it’s not as easy to fix. So we really do not want to have to stop treatment.”

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Treatment would make all the difference

The medication that the boy needs to slow down the progression of the disorder is called Elaprase, which is an enzyme replacement therapy.

This treatment would be lifechanging for De Wet as it provides the enzyme that his body cannot produce and would help his body to function better.

Elaprase was developed by Shire, a biotechnology company in Ireland, and later sold to another company. It is one of the top 10 most expensive drugs in the world.

It was estimated last year that annual treatment for a child that weighs 35kg is R11.7 million.

When this legal battle started two years ago, the High Court in Pretoria ruled in favour of RDSA to secure an interdict that forced the medical aid to pay for treatment.

A formal complaint was also lodged with the CMS.

RDSA only won in the high court and not with CMS, which ruled in favour of the medical aid scheme, resulting in it stopping funding again.

RDSA again went to court and the court ruled for the original interdict to be reinforced. But the medical aid appealed this and the matter has been escalated to the Supreme Court of Appeal for 6 November this year.

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