Tuesday, January 31, 2023
HomeWeekly RoundupMS sufferer in dispute with Topmed over alleged U-turn on treatment

MS sufferer in dispute with Topmed over alleged U-turn on treatment

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.

City Press reports that Mazizi Chembe (28) was diagnosed with multiple sclerosis (MS) in September 2016. 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 is quoted in the report as saying.

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.

The report says Tysabri decreases the frequency of flare-ups in MS-related symptoms and slows down the progression of physical disabilities.

In a letter from Topmed, 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 report says, 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.

The report says 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.

The report says in a response to several questions, 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,” the report says it concluded.

[link url="https://city-press.news24.com/News/ms-sufferer-denied-life-improving-drug-by-medical-aid-20190627"]City Press report[/link]

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