A medicine beyond reach

Suzette Vermaak of Mandini on the KwaZulu-Natal North Coast is 49 but cannot stand up any more and can barely use her hands.

Vermaak has adult onset of pompe disease and desperately needs a drug that will improve her breathing and help her regain her ability to walk.

But her medical aid, Bestmed, refuses to pay for the treatment, saying it is "unaffordable".

This is despite its acknowledging that the disease is a prescribed minimum benefit condition.

According to the Medical Schemes Act, diseases described as being prescribed minimum benefit must be treated.

Pompe disease is an extremely rare illness that causes the body to miss an enzyme that breaks down toxins in the muscle.

It causes muscles to degenerate, makes breathing difficult and can be life-threatening.

Vermaak's neurologist, Dr Christo Coetzee, said the medicine, myozyme, which replaces the missing enzyme, would give her a better "quality of life".

The South African clinical guidelines on treatment state the medicine will improve her lung function and enable walking.

Suzette's husband, Danie, who spoke to The Times on her behalf because she was too ill, said: "She wants the medicine more than anything in the world."

According to correspondence between Bestmed and Vermaak, the medical aid on two separate occasions indicated it would cover the drug, "giving her hope".

But when Bestmed agreed to cover the costs, it had done so using an incorrect dose.

When the scheme worked out that covering her treatment at the correct dosage would cost R300000 a month, it backtracked.

Kelly du Plessis, member of the International Pompe Board and the Rare Diseases Association, said the law required treatment for pompe disease, and because the only treatment globally available was myozyme, Bestmed was legally obliged to pay for it.

Acting on behalf of Vermaak, Du Plessis complained that Bestmed did not follow correct legal procedures when deciding whether or not to authorise treatment in that it did not consult the Council for Medical Schemes to clarify if the treatment must be paid for. He also claimed it did not consult experts on the condition.

Vermaak said it hurt him to watch his wife's health deteriorate.

"I can't cope, but I have to go on," he said.

Du Plessis said four other patients suffering from pompe disease received treatment through their medical aids - TopMed, Discovery Health, Government Employees Medical Scheme and Medihelp.

Bestmed refused to comment on the matter.

It said it was legally required to keep patients' medical details confidential.