Things have changed in Zackie Achmat’€™s life.   Once readily accessible and always quick with a soundbite, a personal assistant now monitors the cellphone and diary of the chairperson of the Treatment Action Campaign and screens visitors before ushering them into Achmat’€™s study.

This is in marked contrast to recent years when journalists clattered through a house noisy with people and wandered upstairs past Achmat’€™s bedroom to a study that faced onto the traffic of Muizenberg Main Road.

As much as these changes signify a new level of structure in Achmat’€™s life and the need to manage multiple requests for meetings and interviews, the more profound changes emerge from his first six months of antiretroviral therapy and how this has forced the charismatic activist to review his life.

Achmat swallowed his first dose of antiretroviral pills in a celebration with friends at his home on September 4th last year.   The injection of energy that followed transformed his life, bringing with it a newfound optimism. By mid-December he reported with delight that in contrast to the regular manifestation of debilitating chest infections, headaches, bouts of herpes and diarrhoea, he’€™d had only two headaches since he started his treatment. His viral load had come down from 47 000 to 533 and his CD4 count (the cells that boost immune resistance) had risen to 350.

Four months later sitting in his study behind an old wooden desk on an autumn evening, a single reading lamp lighting the room with a formal stillness, Achmat says his CD4 count is now 360 and his viral load 83. But 2004 has been a difficult year.

‘€œI felt so much better, I thought in a megalomaniacal way I could rule the world. I could take on my TAC responsibilities, go back to university, become the Virgin Active gym bunny of the year and travel the world. The fact is, one can only do so much.’€

These sobering words follow a frightening setback that occurred in February and March this year and which shook Achmat’€™s self-confidence. The side effects of antiretroviral therapy are well known, most of all to Achmat, but by his own admission, the emotions that go with a life-threatening illness and campaigning for treatment in a politically charged context bred a dangerous state of mind.

‘€œI did two stupid things,’€ he says with characteristic bluntness. ‘€œThe first was when my energy flooded back and I pretended to be a surfer, riding the highest possible wave with a schedule of three, four and five speaking engagements a day, reading, writing and constantly travelling. I started going to the gym regularly and I had a level of energy that I haven’€™t had for 15 years. It was a profound, profound change. But the problem came at the end of the first four months,’€ he says.

Achmat’€™s second mistake was to ignore his own best advice.

‘€œGoing into my fifth month I started feeling a sensation in my feet. At first, I dismissed it, thinking I’€™d done something at the gym. The second week it was clear to me and I thought, ‘€˜I can’€™t let Manto win and I can’€™t let Thabo win’€™, and I kept quiet for three more whole weeks.’€

When Achmat eventually told his doctor about his symptoms, the nerves in his feet were so sensitive he could barely walk. A change of drugs (from D4T to AZT) has arrested the situation and his left foot feels better, but he still can’€™t put any weight on his right foot for any length of time, nor can he walk long distances.

Achmat acknowledges that he was aware of the potential side effects of D4T, especially in his case where he already had a very mild peripheral neuropathy caused by the effect of HIV on his peripheral nervous system before he started antiretroviral therapy.

His friends and doctor warned him against including D4T in his therapy, however, his stubborn commitment to follow the same drug regimen as advocated in the government’€™s ARV roll-out meant he exposed himself to this risk.

Stavudine or D4T (the generic name) is one of the older antiretrovirals. Developed in the early 1990s, it’€™s cheap, locally produced and forms part of the combination of drugs generally prescribed for people starting antiretroviral therapy in South Africa.

Peripheral neuropathy is a common condition with many causes ‘€“ HIV may be responsible, or it may be caused or exacerbated by antiretrovirals, particularly D4T. It can manifest as a tingling feeling in the feet, legs and arms and can develop in two directions ‘€“ either to heighten sensation so that it becomes too painful to walk or to depress it leading to a loss of feeling. However, AZT usually works as a good alternative antiretroviral for those patients likely to develop peripheral neuropathy.

‘€œWhat was so strange is I didn’€™t want to have a side effect because I’€™d had the most perfectly healthy four months and it came from nowhere,’€ says Achmat. ‘€œThe advice I’€™ve long given to my friends and any TAC member is the minute you notice a side effect, go to your doctor and speak about it, and yet here was me doing the most stupid thing and not following my own advice.

‘€œAll that was required was to change a drug. I didn’€™t do that and instead nearly incapacitated myself for two, three months and I’€™m only now starting to come out of it. It’€™s very difficult.’€

Achmat, who has a clinical history of depression, says the fact that he was immobile for a week while his doctor tried to bring the side effect under control brought on a     terrible depression, the worst he’€™s had in recent years.

His psychiatrist reassured him that his depression was natural given his disappointment and prescribed Amitriptyline, an inexpensive and widely used anti-depressant which also controls pain and works well for peripheral neuropathy.

Most importantly, says Achmat, has been the question of facing up to what it means to be on medication that will prolong his life and the need to pursue a sustainable lifestyle.

‘€œI’€™d always say that one can beat HIV and live a long life, but I didn’€™t plan my own life as if I was going to live another, 10 or 15 years. And I didn’€™t take into account that that’€™s much harder work and it requires a different discipline than to go to speak to three or four meetings a day or do hundreds of interviews and stuff like that.’€

On the matter of adherence to his two-pills-twice-a-day regimen, Achmat reports little difficulty in maintaining the routine and has just missed one dose in eight months.

He says he understands the difficulty of taking ARVs when one is feeling healthy and unwilling to be reminded of the burden of treating the illness.

‘€œBut that’€™s why you need treatment support,’€ he urges.

‘€œFor me the most important lesson has been that adherence can best be performed in a supportive environment not in observation. Treatment support is not DOTS (Directly Observed Treatment Support which is used for TB patients). If we base this on observing people daily for the rest of their lives no one is going to get it right. What we have to do is base it on a treatment literate population together with support and an openness in society.’€

Warming to the topic, Achmat underscores the importance of treatment literacy and openness.

‘€œWhether you sit in a plane, a bus or a taxi we need to be able to take our medicines and say ‘€˜this is the medicine I’€™m taking and this is how I take it’€™. We have to create a public awareness that both removes stigma and also shows that these are things we can control and not medicines controlling us.’€  

For all that Achmat has thrived on TAC’€™s battles with government ‘€“ he once declared that he gained 20 CD4 cells from shouting at the health minister ‘€“ he does not relish the struggle that he believes still lies ahead.

‘€œIt’€™s been five very difficult years where you don’€™t eat, you don’€™t sleep, you don’€™t go to the toilet without having your newspaper or your medical journal or your e-mail with you. We’€™ve lived on our nerves and adrenalin for five years, but what is required now is a perspective of 50 years in the epidemic ‘€“ both on the issues of prevention and treatment.’€

The new watchwords to which Achmat keeps returning suggest a different approach than his instinctive urge to action.

‘€œAll I’€™m trying to say is that we need to pace ourselves. We need patience and for me personally that will require a lot more discipline than I imagine.’€      

E-mail Sue Valentine

To listen to an audio interview with Zackie Achmat, click here