Two 10-year-old children, both with a similar rare disease. One is bedridden and cannot speak or sit up. The other goes to school each day where she plays and runs with her friends.
The difference between the two, according to family and experts, is that one is on a medical aid that pays for treatment for a disorder called MPS. The other is not.
"I dreamt the other night he could walk," said Carol Tree about her grandson Geodrick Tree, who she is raising with her husband, Eugene Adams.
At age three, Geodrick could walk, but his illness has caused severe intellectual and physical deformities.
The extremely rare condition means he is missing an enzyme that breaks down waste products in his body, so toxins accumulate in his cells, killing them.
Geodrick requires enzyme replacement therapy, but the drug, Elaprase, must be imported and treatment would cost between R1.6-million and R2-million a year.
While the drug has had a dramatic impact on other South African patients, Geodrick's medical aid, Bonitas, has refused four requests by the family to pay for it, because it is too expensive.
MPS falls under the prescribed minimum benefits section of the Medical Schemes Act, which means medical aids are legally required to cover treatment in full - but only if the treatment is available at a state hospital.
Elaprase is not stocked at government hospitals, therefore any patient whose medical aid declines to cover treatment would need to ask the Council for Medical Schemes to force the medical aid to pay.
While Discovery, Resolution, Profmed and Camaf medical aids pay for enzyme replacement therapy, companies under the Medscheme banner - including Old Mutual, Polmed and Bonitas - do not pay for it for MPS patients.
Medscheme said this week that deciding whether to pay for very expensive drugs for rare diseases was "not an easy decision", but that the high cost meant there was less money for other patients.Medscheme director Nomalungelo Nyathi said administrators had to ensure there was money for all scheme members, "which can be a challenging balancing act".
But Alex van den Heever of the School of Governance at the University of the Witwatersrand lambasted the decision as "morally wrong".
Van den Heever, who used to work for the medical aid regulator, said medical aids existed for "catastrophic expenses" such as Geodrick's.
"That is why people insure themselves with medical aid. Bonitas has a perfectly big risk pool [enough members and money] and is large enough to spend R1.6-million a year on medication for a few patients," he said.
"Prescribed minimum benefits law needs to be better enforced as administrators have an incentive not to pay for claims so they can make more profit."
Kelly du Plessis, founder of advocacy group Rare Diseases South Africa, said Geodrick's situation was repeated in every medical aid administered by Medscheme.
Du Plessis represents 64 patients with diseases related to missing enzymes. Of these, 45 get treatment paid for by Discovery Health Medical Scheme and Bankmed, which is also in the Discovery stable.
Tree and Adams, who live in Ennerdale in Johannesburg, have dedicated their lives to caring for Geodrick.They seldom leave the house as Bonitas also refuses - according to documentation provided to the Sunday Times - to provide a modified wheelchair for the boy.
In contrast, Kylie Victor, 10, of Johannesburg, has been able to take Enzyme Replacement Therapy. Her mother, Karen Victor, said she had been "dying" four years ago and "practically lived in hospital".
She said: "Before treatment, Kylie's health was deteriorating badly. She struggled to breathe ... and I thought she would one night just stop breathing permanently.
"She was frequently sick with flu. She was extremely hard of hearing, she did not have enough energy to walk from the lounge to the toilet. In my heart I knew my child was dying."
Three weeks after treatment, Kylie was able to walk 500m and was breathing so much better that the family could go on holiday. She doesn't need hearing aids anymore but is intellectually disabled. She is well enough to attend a special-needs school and run, speak and play.
Bonitas chief operating officer Kenneth Marion said Elaprase was not registered for use in South Africa and was not proven to have a life-saving benefit.
"Its long-term effect on disease progression is unknown. Thus there is little clinical data showing that it definitely improves quality of life," he said.
However, Du Plessis said the drug had been registered in September.IN NUMBERS
• 800 patients have had their life expectancy improved by an average of 12 years after taking Elaprase since it was registered in the US in 2006, compared to the 95 people who did not take it, according to a study published last year in the Journal of Inherited Metabolic Disease
• 639 patients on the drug from 2016 showed that after six months of treatment they could walk more easily, had better lung and heart function, and experienced a lessening of liver and spleen enlargement, according to the Orphanet Journal of Rare Diseases
A LOT OF TALK AND RULES ON DRUGS
Medical administrators look at the affordability of a drug when advising medical aids, which make the final decision, according to Medscheme director Nomalungelo Nyathi. “Administrators also examine the clinical efficacy of the drug. They use the same rules for everyone to be fair. Medscheme holds a view that dialogue between all role-players, such as government, pharmaceutical companies, funders and healthcare providers, will go a long way in resolving this challenge”...