Johannesburg - Thobeka Xaba, 23, is in a life-and-death struggle against an invasive cancer that has immobilised her left arm. But she has had no chemotherapy since March 25 because her medical aid, Discovery, refuses to pay for the medicine recommended by her oncologist.
Xaba is waiting anxiously at her home in Katlehong, Ekurhuleni, as Discovery appeals against a ruling by the Council for Medical Schemes (CMS) compelling it to pay for her treatment.
Discovery wants Xaba to be treated with a medicine called Doxorubicin, but her oncologist says this will damage her heart.
Ironically, Paclitaxel, the medicine she has been prescribed, costs R32 000 less a year than Doxorubicin.
But Discovery told Xaba in a letter that Paclitaxel was on a “tier” that Xaba was not entitled to with her medical plan.
In May, advocacy organisation Campaigning for Cancer helped Xaba to lay a complaint against Discovery with the CMS.
In a letter to the CMS on May 31, Discovery said it would not pay for Xaba’s medicine because it “is not a covered benefit on her selected plan type and the treatment requested is not the level of care available in the public sector”.
In early June, the council ruled against Discovery, saying the laws governing medical schemes obliged them to substitute drugs when there was a risk of the patient being harmed “without penalising the patient”.
Two weeks later, Discovery wrote to the CMA indicating that it would appeal against the decision, and it has continued to refuse to pay for Paclitaxel.
In the meantime, Xaba has been without chemotherapy and is at risk of losing her arm.
“My left arm is much bigger than the right one. The veins are racing and I can’t lift up my arm or wear my clothes,” she said.
“The medical aid said I can’t have the medicine from my doctor,” Xaba said on Wednesday.
“I can’t get an operation because the cancer is all over. My arm is getting worse but I have to wait to see what the medical aid is saying.”
Oncologist Dr Daleen Geldenhuys, who has been treating Xaba for the past three years, described the cancer as “an aggressive tumour that has penetrated the muscle in her left arm and shoulder and formed what looks like an extra breast on her chest”.
“The circumference of her arm has grown by 6cm in a two-week period,” said Geldenhuys.
“If we leave it much longer, the nerves in her arm will be compressed beyond repair and she will develop gangrene and may lose her arm.
“Surgically removing the tumour is not an option, as her arm, shoulder and part of her chest would have to be amputated.
“She has already been on Doxorubicin twice, and this drug has an accumulative toxic effect,” added an exasperated Geldenhuys. “If she gets it again, she has up to 40 percent chance of heart failure.
“So if the medical aid has a heart ready for a transplant, then I will give it to her because the regimen they want me to give my patient will damage her heart.”
Xaba has struggled with the form of cancer called fibromixoid sarcoma since she was a child, which is why she had Doxorubicin before.
“At this stage, we don’t think Thobeka will go into remission. But we want to shrink the tumour to a manageable size so that this lovely, sweet young woman can have a life like others her age,” said Geldenhuys.
DISCOVERY RESPONDS:
Discovery Health chief executive Dr Jonathan Broomberg says the scheme’s decision to appeal the CMS ruling “is not based on the cost of the medication at all, but rather on ensuring that the member obtains the appropriate medication, both in terms of her plan entitlements and in clinical terms”.
Broomberg gives three reasons for refusing to pay for Xaba’s medicine, based on expert clinical advice, namely:
* There are other appropriate medications that would be fully covered by the scheme in terms of this member’s plan benefits;
* There is no published evidence to support the use of the requested medicine in this member’s clinical condition; and
* The requested medication is certainly not in use in the state hospital system for her condition, which is the ultimate test for prescribed minimum benefits entitlements in terms of the Medical Schemes Act.
Broomberg also claims Discovery made several attempts to engage with Xaba’s doctor to discuss alternatives, but “co-operation in this regard has not been forthcoming”.
Health-e News Service
OTHER DISPUTES:
* August 5: Three-month-old Connor Edmonds was born with hypophosphatasia, a condition caused by the lack of a crucial enzyme to bone development (known as tissue non-specific alkaline phosphatase), meaning his bones would stay soft and pliable. However, a Canadian pharmaceutical company had designed a specific treatment for Connor’s rare disease, called Asfotase Alfa, and all Discovery had to do was pay for his hospitalisation overseas. But the scheme refused. However, Discovery eventually worked its connections at the Medicines Control Council to get the approval for the experimental treatment to be made available here.
* July 29: Beverley Smith, 58, temporarily lost the use of her left leg while Discovery quibbled over whether to pay for her surgery. This was despite two letters of motivation from her doctors. The scheme eventually authorised the spinal surgery to insert a U-Device in her spinal vertebra. – Vuyo Mkize, The Star