One year on - Anna

This week, it will be a year since HIVEX started treating people at Commercial City. During that year, 850 people have come for treatment. It has been an extraordinary year, and we will be telling some of their stories. We have had all sorts of people – people who were quite well, and people who looked like they were facing imminent death – improbably thin, with HIV induced paralysis, infections causing deafness, lesions and sores, ulcers in the throat moth and stomach so that eating was impossible, those with HIV induced dementia, undersized listless children, people who have suffered from misprescribed or wrongly administered HIV and TB drugs. Some taking ARVs, most not. Many refusing to go to clinics because of shame even though they face death. Mostly black people, and a few white. People from all social classes and income brackets, and from all over South Africa, as well as from other African countries.

Illness is a great leveller, and there is a wonderful sense of community amongst patients. Many are poor, at the point at which infection has become a real problem with symptoms such as tiredness, night sweats, loss of appetite, not taking ARVs, untested, undernourished, with no real appreciation of now nutrition helps the immune system. Looking at the whole picture, two things stand out : the high and often undiagnosed incidence of TB, the biggest killer in Africa, and woeful nutrition and knowledge of the importance of food and water. Poverty may be the biggest reason for poor diet, but it is not the only reason. Soils are depleted, and in many areas, especially in townships, it is hard to cook and there is nowhere to grow anything, and little to buy, so that people survive on Pap (maize porridge) with negligible fruit or vegetables, but ready access to alcohol and drugs. This week, a TB specialist told us that he believes that the incidence of TB on the Kwazulu Natal coastal strip is 80 – 90%. TB and HIV are co-factors – ie each greatly exacerbates the disease progression of the other. Clive and his volunteers encourage people to test and be treated for TB before coming to HIVEX – but many don’t, and in their experience, initial TB testing often misses TB which is not immediately apparent in the lungs.

As HIVEX treats more and more people, we see the power and limitations of the treatment. In a previous entry, I talked of Asanda, the little girl who was paralysed aged 9 through an HIV-induced stroke, for whom movement returned when, aged 16, she had EMG treatment. That, I guess, was because her body, strengthened, was able to cope with other things better. Recently, Clive treated a man called Siswe, who was paralysed through some effect of HIV on the spinal fluid. His paralysis remained. This month, he had an operation to release some of the fluid, and he is making a stunning recovery.

We want to be able to create the best possible treatment, and we can’t do that without proper testing. We can’t do that without equipment, scientists, and money. We want to carry out a proper trial on people taking ARVs, which were not readily available in South Africa at the time HIVEX did its trials. and HIV is a mutating virus. We don’t know whether we are still targeting the best things, what adjustments should be made, either overall, or for certain individuals. It seems, overall, very good indeed. I wish we could also knock out active TB, and stop its debilitating effects.

Ten people who came for EMF treatment have died : only one of those had completed the course of treatment. Some of these patients came for treatment at a point when their organd were already starting to fail. A few people ( around 30 out of our 850, so far) seem to improve and then symptoms return. Some of that number have been tested – and they all have multiple strains of HIV ,so maybe the equipment is failing to fully knock out part of one strain. We don’t know, and what prevents us from knowing is the ability to carry out research – flow cytometry equipment - and scientists. Suggestions welcome please.