Parole furore raises the dialysis conundrum

They were also raised in this column in September 2008 in a report on the death of Mawethu Magona, a death that summed up the tragedy currently facing so many economically disadvantaged families.

Magona, a former bus driver and trade unionist died at the age of 59, not because he could not be helped, but because he and his family could not afford the cost of dialysis. Like men and women everywhere who suffer kidney failure, he had only two choices to extend his life: dialysis or a kidney transplant.

And like perhaps the majority of kidney disease sufferers, his condition was only diagnosed when it had reached a chronic stage. He had given up bus driving because of constant fatigue and increasing anxiety. This he blamed on the stresses of dealing with traffic and the fact that he was getting older.

He then drifted from job to job, all the time becoming more and more lethargic; for many bosses he was the epitome of the “lazy worker”. But he was ill, chronically so, and when his condition was finally diagnosed, he had only months to live without either dialysis or a transplant.

Although family members were prepared to donate a kidney, he was beyond the general “cut-off” age of 50 to qualify. Besides, a transplant really amounts to the rental of a further lease on life: the medication necessary to ensure that the transplanted organ is not rejected, currently costs some R6 000 a month.

And even if Mawethu Magona had had medical insurance, he could only have bought the limited amount of dialysis provided for by such schemes. Once the limit was reached, dialysis would have been stopped and he would have died.

As several trade unionists remarked at the time, his death provided clear evidence that the egalitarian ideals enshrined in the South African Constitution are often meaningless; that it is the size of a bank balance, sometimes the level of powerful connections, that determines whether a chronically ill person lives or dies.

In the nearly four years since Mawethu Magona died, nothing has changed: a hefty bank balance or other access to funding still guarantees preferential treatment. And in the case of people suffering kidney failure, such treatment means access to regular dialysis, at an average cost of R15 000 a month.

Most patients require three four-hour dialysis sessions a week. “I know it has been widely reported that Mr Selebi was receiving dialysis three times a day, but that is simply not possible,” says a leading Johannesburg nephrologist. “I am sure the statement was a mistake, but nobody seems to have corrected it.”

Outside of private dialysis, a fortunate few patients in urban centres around the country who cannot afford to pay, have reached the top of lengthy waiting lists and now receive their life-saving treatment in public hospitals. But many sufferers never make it to the top of the lists and perhaps thousands more are never diagnosed and never join the queue for dialysis.

With diabetes, high blood pressure and, increasingly, HIV being major factors in renal failure, many workers are only diagnosed when their kidney problems are chronic. Like Magona, they become “lazy”, lose their jobs and often become unemployable.

With little or no income and often living in appalling conditions, most have scant hope of survival even if they qualify for dialysis. However, in the Western Cape 100 men and women in just situations, have managed to survive because of a transport and feeding scheme run by the Cape Kidney Association (CKA).

According to CKA fund manager, Molly Fabe almost all of the 100 require assistance to get them to hospital since some have no income at all.

But the CKA no longer has sufficient funds to pay for the transport subsidies and, in particular, the food parcel programme. These patients now have to rely on friends, relatives and neighbours, often nearly as destitute as themselves, to try to keep their appointments for dialysis.

If they manage to get to hospital three times a week, they can stave off an early death by renal failure. But, without adequate diets, they are still likely to die prematurely from the diseases of malnutrition.

The situation, says Fabe, is “desperate”. Just how desperate can be gauged by the fact that the CKA is currently trying to raise funds for wooden prefabricated “Wendy houses” to provide shelter for five of the patients who do not have even barely adequate accommodation.

Until October last year essential funding for the transport and food parcel programme came from the National Lottery — Lotto. It really was Tata ma chance for the fortunate few in the Western Cape. And Tata ma millions did not come into it: according to Molly Fabe, the annual cost of the food parcels and transport subsidies is little more than R400 000.

She quotes from a letter from the Lotto board that turned down the CKA application for further funding. “Budget constraints” was the reason given for refusal. “By April, we ran out of money,” says Fabe.

This funding shortage — along with the “budget constraints” explanation — has angered health workers. Says one: “This is the same Lotto that provided R40 million to fund the ANC Youth League’s ‘kissing festival’ in 2010.” The R40 million, he points out, could, at current prices, have provided food parcels for 100 patients for the next 400 years.

However, because of the furore surrounding the medical parole of Selebi the issue of dialysis waiting lists and the situation of economically disadvantaged patients has again come to the fore and raised hopes that improvements will follow; in the Western Cape that funding will be released.

“The fact that there is discussion and publicity is one bit of good that has come out of the Selebi business,” says Fabe.