Treatment Action Campaign chairperson Zackie Achmat has started antiretroviral therapy but lives with the guilt of having access to the life-prolonging drugs while fellow South Africans wait for the roll-out of ARVs in the public health setor.
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ZACKIE: I’ve wanted to take medicines for a long time and so to me it’s a genuine relief to have taken the decision, and let me say why, if you take this year alone, I’ve had 40, maybe more than 40 days off work, I’ve had chest infections, herpes, recurrent herpes, I’ve had thrush, I’ve had diahorrea and so on that have made me sick. I’m very lucky I can take time off work anytime I want to, I also have the best medical care.
SV: Achmat says he has already exceeded his medical aid’s chronic medicines bill for this year because of needing to treat these illnesses. However, despite the fact that he knows his body now needs antiretrovirals, it evokes deep ambivalence for him.
ZACKIE: Taking the medicines, even taking it now when government has made this commitment, I’ll still feel guilty. I’ll feel as if there are many many people who won’t have access for a long time. I’ll worry about them. I’ll worry about the fact that the country still hasn’t woken to the fact that we have people dying on our doorsteps or near to our doorsteps or in shacks away from us, in homes away from us and we can close our eyes to it, so that will still make me feel bad. The people I really will feel bad with are the people who helped make this decision real. And those are people with HIV in all different parts of the country who will not get access immediately, and so that still makes it difficult.
SV: Many of Achmat’s closest friends opposed his decision to refuse antiretroviral therapy as part of his campaign against government policy. Was this a source of stress?
ZACKIE: Almost every one of my friends was against my position, except one person who was against the position but who didn’t force his view on to me ever. The most difficult part was saying no to people you love. Not to people who care at a policy level, but your friends caring, all those people it was very difficult. Eduard said to me, one day we were discussing it and he said I don’t care about other people getting their medicines, I want you to get medicines and that was a very difficult pressure. But it’s people you love who want you to live. What became real for me is how many women leave children behind and what those children must be thinking. We talk about ‘the orphan problem’, but think of those children who want their parents to live. Or think about husbands and grandmothers who want their families to live and that brought that home for me. I’m privileged to have had that experience in some way, although it could never be the same as people who lose people.
SV: It has taken a long time for Zackie Achmat to progress from HIV to AIDS, but his low CD4 cell count means his immune system is no longer holding back the virus.
ZACKIE: I’m what they call a long-term non-progressor. Which means my virus is fairly weak in my body, it’s taken more than 10 years or so to manifest in serious symptoms and its taken that long to knock my immune system. I think it has a lot to do with my lifestyle. I’ve never drunk alcohol a lot. I did drink one bottle of whisky when the Berlin Wall came down, I did drink a bottle of whisky every year since 1989 at new year’s eve to celebrate the fall of the Stalinist states. I’ve never smoked a cigarette, I’ve never smoked a dagga joint in my life, I’ve never taken drugs in my life. And I used to do long distance running, at times I used to run 15km a day, so I had a very strong system. And the virus that entered my bloodstream and my body thru unprotected sex has taken its toll on my body but if I was a weaker person with no proper nutrtion with an alcohol problem, with a drugs problem, I would have succumbed probably much sooner, so I’m very lucky.
Having said that, my body now needs medicines. My viral load is under 40 000 and it varies between 17 000 and 40 000. When your viral load goes over 10 000 you should consider medicines if your immune system is weak ‘ and my immune system is weak. But that’s a very low viral load. I’m thinking of someone like Edwin Cameron who when he started medicines was well over 200 000 viral load. So, my viral load is fairly low, my CD 4 count is very low though, and that’s leading to constant infections and making me unproductive.
I think the worse thing for me is how unproductive I am. That 20, 30% of the day is spent being tired. You get tired of being tired. Not only that, I used to read 100 to 200 pages a day and was capable of writing and speaking. Now if I have one conversation like this I feel completely dead tired afterwards. My doctor said to me and most of the people who have taken meds who I’ve spoken to said one of the first thing that hits you, once you’ve taken your antiretrovirals and your side effects have subsided, is you get your energy back. That’s the thing I look forward to most, really getting my energy back.
SV: There is also some apprehension.
ZACKIE: I wonder if I’mgoing to be the six, seven, eight percent for whom medicines don’t work. Whether I’ll be in the 10, 12% bracket who get serious side effects. I wonder if whtehr I’m going to get mild side effects. All of those will be with me. All of us know antiretrovirals work for most people, they work for 90 percent. Some people get very serious side effects and they get managed. If you start too late, I’m very lucky I’m not starting too late. There are many peple who start with their CD4 counts under 100, under 50, under 10 and for those people very often it is too late. You can’t take your medicines so late. That’s the tragedy of this govt. if they’d started 2, 3 years ago we would have saved so many more people and we would have saved in terms of hospitalisation costs and so on.
SV: A lot of hope is riding on the pills which Zackie Achmat will begin taking, twice a day as from Monday.
ZACKIE: I hope my viral load will get completely eliminated within 6 weeks to 6 months, that I don’t have a doubt of. I hope my CD 4 count will recover to around 600. Those are very important things for me and when that happens I will be very happy. The other thing I really look forward to is not having infections every 2nd week, every 3rd week having an infection having to take time off work.
But I’m very lucky I have an enormous support network of friends. And the most important thing is, I have TAC. After shouting at the health minister I gained an extra 20 CD4 cells. The activism of TAC is an enormous boost to many comrades with HIV, not only me but many of us. It’s the one thing that gives you hope and I think hope counts for a lot of CD4s.
e-mail Sue Valentine