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You may think that belonging to a medical aid means you can access expensive life-improving treatment for a chronic dread disease, but insurance policy fine print can decree otherwise, as Mazizi Chembe discovered
A young woman’s health hangs in the balance after her medical aid allegedly made a U-turn about giving her access to life-improving drugs, allegedly telling her it was “a mistake” that it approved the drugs for three months in the first place.
Mazizi Chembe (28) was diagnosed with multiple sclerosis (MS), a chronic disease in which the immune system eats away at the protective covering of nerves and can affect one’s brain, spinal cord and optic nerves, in September 2016.
The cause of the disease is unknown and it cannot be cured.
At the time of her diagnosis, Chembe – a remedial teacher in Midrand – was already contracted to Topmed on one of its cost-saving plans and paid a monthly premium of R1 300.
She is now on Topmed’s active saver plan.
“Immediately after my diagnosis, my neurologist put me on chronic medication called Rebif. This was to help stop the progression of lesions in my brain that the condition had caused.
“This medication cost about R10 000 a month, which Topmed was obliged to pay for by law because it’s a chronic condition. This medication seemed to be working well until last November, when I had to go for a routine MRI scan,” she told City Press.
After the scan, her neurosurgeon, Dr Kaushik Ranchod, confirmed that she had developed new lesions on her neck and spine, and expressed the opinion that her illness was “aggressive”.
Chembe had also started noticing a decline in her mobility and she was walking with difficulty.
She was moved from Rebif to Tysabri, a treatment for people with relapsing forms of MS.
Tysabri decreases the frequency of flare-ups in MS-related symptoms and slows down the progression of physical disabilities.
In a letter from Topmed, which City Press has seen, the scheme stated: “Kindly be advised that the Tysabri has been authorised for a three-month period and a progress report will be required for continued authorisation. As per the medical adviser, the use of Tysabri should be closely monitored for side effects, therefore the progress report is required.”
Chembe said: “After three months, the medical aid breached its agreement and told me that it was a mistake that they allowed me to go on the Tysabri, which cost about R15 000 a month.
“They said that I needed to change my medical plan halfway into the year and pay R7 500 a month if I still wanted to use Tysabri. They also said that, if I couldn’t pay for this, I had to use a drug called Copaxone. My doctor said this didn’t make sense because it has the same effect as Rebif, the first drug that I was on.”
But the medical scheme denies that it gave any guarantee that Chembe’s treatment through Tysabri would be funded beyond three months, adding that it had met its obligation in funding treatment for the authorised period.
In a letter to the scheme, dated April, to motivate for his patient to stay on the treatment, Ranchod said that Chembe had been doing “significantly” well on Tysabri.
He added: “Miss Chembe was then informed that an equivalent drug, glatiramer acetate [Copaxone], would be approved as the continuation to stay on Tysabri was declined.
“From a medical perspective, this is not acceptable to have initially approved Tysabri therapy and to then decide to downscale to Copaxone.”
Ranchod said that abruptly stopping the treatment placed Chembe at risk of a relapse.
Chembe also enlisted the help of Jerome Pillay, who is affiliated with Rare Diseases SA. He took up the matter and approached the medical scheme’s principal officer on her behalf to make a case for her staying on the Tysabri treatment, to no avail.
He is now helping her to try to get her matter resolved through the Council for Medical Schemes.
In a response to several questions by City Press, Topmed replied with a statement explaining that Chembe’s plan was a hospital savings benefit plan and was “limited to prescribed minimum benefits [PMBs] for chronic conditions”.
It did not specifically confirm or deny that it had told Chembe that the initial approval of the drug was a “mistake”, despite being asked.
It confirmed that hers was a condition that was recognised under the 25 listed chronic conditions in terms of the Medical Schemes Act and thus, through the act, was funded in full by the scheme.
It also stated that, where a benefit option only provided for PMBs (such as in the plan Chembe is part of), the medical scheme funds what constitutes PMB level of care for PMB conditions, which is based upon prevailing practices at state facilities.
“In this member’s instance, a pre-authorisation was issued to the member for a fixed period of three months,” it said.
“There was no undertaking or guarantee that the member’s requested treatment would be funded beyond a period of three months, and the scheme met its obligation in funding the medication for the authorised period.
“All in-formulary treatment [drugs covered by the plan] are still available to the member and will be funded by the scheme.
“If the member feels prejudiced by the scheme, she is entitled to contact the Council for Medical Schemes for assistance and resolute adjudication with her complaint,” it concluded.
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