The family of an Eastern Cape man is squaring up to take on the Council for Medical Schemes (CMS), after an unsuccessful struggle to have Discovery cover the costs of his costly cancer medication, and after they were forced to crowdfund to get him on to the treatment.
Diagnosed with what they saw as a death sentence a year ago, Reverend Barry Fourie’s only hope was the expensive treatment Discovery refused to cover.
Through fundraising, however, he has managed to already meet the halfway mark of his immunotherapy, a specialised targeted treatment which costs a cumulative R1.5m for the 18 bags needed to treat his epithelioid inflammatory myofibroblastic sarcoma – a rare and aggressive cancer.
News24 reports that Fourie was in a race against time after a tumour the size of a golf ball was discovered after the removal of the first mass following his diagnosis.
But Discovery, refused to pay for his treatment as the “ultra-high cost” medication was not registered for his cancer type.
Discovery said a clinical review process considered the rarity of his disease, his clinical needs, the limited nature of available treatment alternatives and evidence of the medication – pembrolizumab – for his cancer type before making its decision.
Fourie, a retired preacher, doesn’t have the money to cover the cost, but through the crowdfunding, he and his family have raised R820 000.
And after finishing nine bags of treatment, the sarcoma decreased by 33%.
Although not as active as he once was, he continues to plough his energy into his church work, training preachers and delivering sermons wherever in the province he is needed. He turned 74 last week and “feels good”, he told News24.
Yet the fight for funds to keep him alive is far from over as the Fouries prepare to appeal to the CMS to intervene in Discovery’s decision to decline paying for his treatment.
His daughter, Minki, said the family was overwhelmed with gratitude for those who donated towards Fourie’s financial battle to stay alive, and helped them reach 57% of their target within eight months.
The treatment plan was prescribed after rigorous tests, Minki said, while her father’s oncologist recommended it as his best and only option to follow up the removal of his tumour.
“The medication is working. We saw a 26% reduction in tumour size after just four drips. He is responding very well to it, and still, Discovery sticks to its funding decision.”
She said that initially, she had thought she would be able to cover the cost of one drip with her fundraising efforts. Her family collaborated to try to fund the second while they waited for medical aid to approve his oncology plan.
“But the good news never arrived from Discovery. It turned out to be a battle … which has been ongoing for 10 months now.”
Epithelioid inflammatory myofibroblastic sarcoma is “not just another cancer”, she said.
“There are only 55 reported cases worldwide, and no consensus guidelines on how to treat this. But the medical aid is brutal and won’t make any exceptions for rare diseases.”
Fourie was found eligible for the treatment when he scored 100% after programmed death-ligand 1 (PD-L1) testing, which measures what percentage of cells in a tumour express the immune-related biomarker.
However, the treatment – Keytruda Pembrolizumab – is simply too expensive to cover.
The Fouries have asked for full payment of all medication in their application to the CMS.
“I think my dad will be finished with his course when we get an answer in the end,” Minki said.
“They are forcing a very rare cancer under a general umbrella. They keep asking for large randomised control studies, level one evidence, something that a rare cancer with 55 reported cases worldwide will never have. They are treating my dad unfairly because his disease does not have a tick box for which they have a protocol.”
Discovery Health CEO Ron Whelan said the scheme’s funding decision “remains unchanged”.
“This is based on the limited clinical evidence supporting the effectiveness of pembrolizumab for Reverend Fourie’s specific cancer type, as well as the benefits available under his plan type. Furthermore, the medication is not licensed or registered for his specific cancer type, meaning its use in this case falls outside standard regulatory approvals,” Whelan said.
“Given the rarity of his tumour, the clinical data supporting the effectiveness of Keytruda Pembrolizumab remain extremely limited. A comprehensive review of all available published studies was conducted, but the evidence was insufficient in both quantity and quality to justify funding.”
Under the scheme’s benefits, the immunotherapy is only covered through the oncology innovation benefit on its executive and comprehensive plans for a defined list of “clinically appropriate” cancer indications.
On other plans, such as Fourie’s Classic Saver, coverage is limited to a select list of oncology diagnoses.
Given the rarity of Fourie’s cancer, his unique clinical needs and the limited alternative treatments available, his application for pembrolizumab was reviewed by its clinical benefit advisory, as well as healthcare company Icon Oncology’s treatment plan review committee, comprising an independent group of oncologists, Whelan said.
“Based on this review, a decision was reached to approve three cycles of pembrolizumab (Keytruda) on a trial basis up to the cost of prescribed minimum benefit level of care applicable to his plan, despite the paucity of evidence.”
Fourie lodged a dispute with its disputes committee, an independent panel of experts that reviews formal disputes, which upheld the scheme’s funding decision.
“While we recognise this is an extremely challenging situation, Discovery Health remains committed to making fair, medically guided funding decisions based on the best available clinical evidence and applicable plan benefits,” Whelan added.
“We understand the concerns raised and encourage continued dialogue to explore possible support options for Reverend Fourie.”
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