They’re probably two out 20 children in the world with a degenerative neuro-muscular condition that destroys the intestinal system. They cannot eat normally - if they do, they experience excruciating pain and discomfort. Their bodies cannot absorb nutrients, so the only way to feed them is enterally - through the stomach.
The autoimmune disease is so rare that many doctors are unaware of it and patients rarely reach the age of 12.
Born in 2011, David and Nathan Sim developed hollow visceral myopathy almost a year apart: David in May 2017, and Nathan in January last year.
The only sustenance the Sim boys can tolerate is Neocate Junior. At a cost of R500 a tin, the family spends R21500 a month. Add in Pegicol, a paediatric laxative required in high dosages, and 30 feeding tubes that cost R3500, and the total bill comes to R30000 a month.
And then there’s the team of specialist paediatricians: a gastro-enterologist, pulmonologist, rheumatologist, surgeon, cardiologist, physiotherapist, biokineticist and specialist dietician.
The family had informed their medical scheme about the issue and upgraded to a higher medical plan. But because hollow visceral myopathy is an exclusion on Discovery, the scheme won’t cover an 80% portion of the formula - unless the boys are malnourished.
Loren Sim, the boys’ mother, says: “We’re just an ordinary family - we didn’t choose this for our angels. Which family can afford an extra R30000 a month on feed and medication, on top of paying so much to be on one of the highest medical plans?”
It’s a position no parent wants to be in, especially when they’re on one of the highest plans with arguably the best medical aid in the country.
Discovery told the Sims there is no cure for the condition and so it’s not financially viable to fund.
But their twins are not just ill, they are terminally so. The enteral feeding is the only thing keeping them alive: they’re plugged into machines which are tucked into little backpacks for 23 hours a day.
The disease has worsened rapidly - the next move is to through central line feeding. Discovery protocol is that since the children are no longer malnourished, they will not fund the feed. Their medical team has tried repeatedly to convince them otherwise, but Discovery will not budge.
Sharon Freund, the twin’s aunt, says: “Their twins are dying and the medical scheme that they pay loyally every month does not see the value in saving their boys’ lives.
“They cannot take them off the Neocate feeds, as they will die, yet Discovery states they are currently not malnourished, therefore they do not cover the Neocate feeds.”
She says the twins have been through needle-pricks, medical procedures, doctors, hospital visits, medicines and feeds.
“Life for them revolves around being sick. They are the bravest, strongest, most pure and beautiful individuals who, through it all, never stop smiling. They deserve everything possible to try to keep them well for as long as their time on Earth allows.”
The boys can’t play physically, Loren says. “Yet they’re still very happy little souls - it’s a life they know. It’s their normality. The medical team has tried fruitlessly to seek alternatives, but this feed is the only thing keeping them alive. Should I take them off, they will get horribly sick and die.”
Initially, Discovery declined their applications, saying it’s not a “prescribed minimum benefit (PMB)”, which is a set of benefits that all schemes are legally obliged to fund. This includes any emergency medical condition, 270 medical conditions and 25 chronic.
Loren says: “We know this is not a PMB - this is palliative treatment. Discovery has an ex-gratia application, but their condition doesn’t fit into the mould. A 60-page document told (us) no appeals will be accepted - and they even got our surname wrong.
“I understand the limitations of medical aids - our kids are probably the only ones with this disease, in the country. Why am I paying medical aid? ”
She says they have to do everything they can to keep the twins alive and comfortable for as long as possible.
“Our doctors are horrified that Discovery will not listen. They will not even listen to these highly specialised doctors. The only way you can cure cancer is with chemo; the only way you can keep my boys alive is to feed them.”
Dr Jonathan Broomberg, Discovery Health’s chief, responded: “We really are fully aware of the very tough and challenging predicament this family is confronting. At the same time, our obligation as the administrator of the Discovery Health Medical Scheme is the ensure that the registered rules of the scheme are implemented accurately, consistently and fairly to all members in all situations.
“I believe you are aware that medical schemes are, by law, not-for-profit organisation, owned by their members. A decision not to pay a claim or to fund a particular product or service is thus different to the decision of a for-profit insurer. No one is benefiting from a profit perspective from the decision not to fund these feeds for the Sims twins.”
He said feeding products, including Neocate, are a general scheme exclusion on all Discovery’s plans.
However, in the case of the Sims, Discovery received a clinical motivation for funding for special feeds, which was approved while they were malnourished. Beyond that, the “scheme has no choice but to decline the request in line with its registered rules”, said Brooberg.
On Thursday though, Radio 702 station picked up on the issue and provided some relief to the Sims, via their partnership with Dischem Foundation.
Radio 702 presenter Joanne Joseph had learned about the family’s woes on Facebook post. Subsequently, the foundation committed to covering a year’s supply of Neocate.
* Georgina Crouth is a consumer watchdog with serious bite. Write to her at [email protected], tweet her @georginacrouth and follow her on Facebook.