ZACKIE ACHMAT: In the first 4 months things went absolutely fantastically and now they’re going a lot better again. My viral load is 83, which is almost undetectable and hopefully in the next month or two it will go completely undetectable and from then on it will be plain sailing, and my CD4 is over 360 again. So my CD4 count has gone up substantially from 203 which was the lowest point it’ s been at, it’s gone up to 360 and the percentages are rising more steadily, so from that point of view I’m really well. I’ve put on a few kilograms of weight, more importantly than that, I have had no sustained infection. No bronchitis, no chest infections, no sinus infections, no colds, no herpes, no skin infections except now a mild psoriasis, but that’s also part of my immune system reconstituting itself, so it’s really amazing, so there’s been no major infections. What happened, in the first four months, I did two stupid things.
The first stupid thing was my energy flooded back, it was like opening a dam wall. My energy flooded back and I pretended to be a surfer and ended up riding the highest wave possible, like an impossible schedule of 3, 4, 5 speaking engagements a day, reading, writing, speaking and constantly travelling. So I got an energy back that I hadn’t had for 15 years. It was a profound change. A profound, profound change.
What was so strange is, I didn’t want to have a side effect. I didn’t want to have a side effect because I had the most perfectly healthy four months and I didn’t want to have a side effect and suddenly it came from nowhere. And then, I took a stupid position, which was I didn’t want to prove that these drugs cause side effects, yet I knew they caused effects, I knew and it’s very important, and the advice I give to any of my friends and any TAC member and anyone, the minute you notice a side effect, go to your doctor and speak about it, and here was me doing the most stupid thing and not following my own advice. And so I changed the medicine, I had to swop my Stavudine for Zidovudine, for AZT, but that also coincided – the fact that I was immobile for a week – brought on a terrible depression and re-awakened my depression. And so I went through what I think was my worst bout of depression for the last few years. And I’m seeing a psychiatrist and getting support for my depression and she said to me, ‘well, look, it’s natural’.
HIV on its own, as a life threatening disease, causes depression. I have a history of clinical depression. HIV causes two or three kinds of depressions. The first is obviously the natural depression that anyone would get if they had a life-threatening condition. The second is, that you get a depression which is related to a deterioration of the central nervous system and the virus starting to affect your brain, eventually leading to dementia, and that’s very well documented and the ARVs reverse that in most cases.
SUE: So what is Achmat’s advice for those embarking on antiretroviral therapy?
ZACKIE ACHMAT: You’re going to feel a period of a miracle in your life when you start taking medicines, but that is ephemeral, it’s not going to last. Sometimes you will get side effects and you have to take it seriously. You can’t ignore it. That’s the most important lesson on the side effect question. The most important thing for me, is the fact that I have to plan the next 20 or 30 years. And that means, for me, I didn’t take into account that that’s actually going to be much harder work and it requires a different discipline than to go to speak to three, four meetings a day, do hundreds of interviews and stuff like that.
I’m so much happier being able to take my mind off AIDS, but the situation requires not the taking off of minds of AIDS, but an intensification of political attention to HIV. And that brings us to the current situation, we TAC, as an organisation, our national leadership we’re at the end of our tether with government. We’ve lived on our nerves and adrenalin for five years, and what is required now is a perspective of 50 years in the epidemic ‘ and that’s both on the issue of prevention and on the issue of treatment. All those sorts of things bring a new urgency to the table and the antiretorviral roll-out brings new challenges.
If we do the antiretroviral rollout properly it can have huge benefits not simply for the health care system but it can have enormous benefit for how people look after their health more broadly ‘ eating properly, not drinking in excess, getting exercise, and all those sorts of health seeking behaviour that is critical in a society such as we have.
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