This is part of Outrage Magazine’s coverage of the 2014 International AIDS Conference in Melbourne, Australia.
I was born in a city in Africa which many people would call little more than a small town. Growing up I had the joy of playing in the dust in a carefree environment, wearing what I would only later know was clothes handed to my mother as clothes others in the family had grown out of. Resources were scares, and wastage was not an option. For two years of my early life we lived in tents in the middle of the great Namib Desert. Later my father was given a small caravan as well, but while it had a small kitchenette this was never used, because it made the caravan to hot. Every morning my father would leave early to fetch water for my mother on the nearest farm. He would say to my mother she had no right to complain because she lived like a queen in the desert – we had water! Water to drink, water to cook, water to wash. To this day I cannot endure a tap left dripping, or rinsing dishes under a running tap; water is too precious.
I tested HIV positive in 2000, a time when triple therapy was just become available for people in the West, and for the handful of people who could afford it in other parts of the world. When I first tested HIV+, my immune system was already seriously compromised, it was at CD4 200. My viral load, another WHO (World Health Organization) indicator of AIDS, was 125000 – 10000 would have been enough to classify me as having AIDS, so I needed treatment urgently. There was however a problem – while buying antiretroviral therapy was just becoming possible in South Africa at that time, the cost was almost double my priest’s salary, and my partner was HIV positive as well. How was I supposed to get therapy for both of us when my entire salary would cover only half the ARVs for one of us?
The only way was to get onto medical trials. God was gracious, we were accepted onto a medical trial within months. I was given 5 different drugs to see what effect it would have on me, could the human body cope with that intensity? Mine could not. Within 28 days of starting therapy I was in an intensive care unit. I had not been able to eat or drink anything for the preceding 28 days. I vomited everything I ate or drank, and had constant diarrhea. That in itself was killing me, but I had also developed lactic acidosis, a rare side effect of the medication. It was God’s Grace alone that brought me to a doctor who really had the knowledge needed to even recognize these conditions, and secondly managed to treat me. I became the test case, the first person in the world to survive those levels of lactic toxicity without a full liver transplant. I was not in a setting where that was not even remotely possible, so I relied on a skilled doctor and the Grace of God.
In the years of my ministry which followed, I saw the picture about HIV slowly change. I was burying people who had no access to treatment while doctors and scientists in the West were saying you can’t give ARVs to Africans because they don’t have watches. I was consoling families when their sons or daughters died because they fell outside the government quota of people who could get onto treatment. We nursed people at home who were put on treatment so late that the body could not cope with the strength of the drugs.
The world of HIV has changed dramatically since those early days. Today, in many cities around the world ARVs are available to those who need it, but stock outs are frequent, second and third line options a dream and alternatives when side effects are extremely severe not even considered. At the same time, in other settings six different lines of ARVs are available, people are using ARVs as prevention and tests for your CD4, CD8, Viral load, liver function, kidney function, and anything else you can think of is provided as standard.
How do we marry these two realities? One of the places where this can happen is an International AIDS Conference. It seems immoral to spend thousands of dollars – which could have been used to provide treatment to hundreds of people – on a ticket for a single person to travel around the world to get to a venue where accommodation is expensive, conference fees over $1000 and the environment so far removed from the living conditions of the vast majority of people in the world. So why do we do it? This is one of the few places where these two realities can come together, where those who don’t have a crust of bread to take with their ARVs come face to face with those who say without a watch you should not be given medication. Here we can set international targets which force our governments to act, and which can be used to hold them accountable. In these conferences, year by year we make slow and painful progress, but the cost is huge. Every year we wait is a year more people are infected, more people die, more families are robbed of bread winners and fathers and mothers and sisters and brothers and lovers and friends.
The world we live in is a world of gross inequality, but it is a world where our lobbying and advocacy in the field of HIV needs to happen on many different levels. We need to change country budgets, AIDS policies, international and national laws. We need to continually examine what are the blockages to universal access to prevention, treatment, care and support, and together fight for what we need. It is a dichotomy, but it is also a platform, and as long as there is one person who is denied lifesaving life changing medication which should be available to them there is work to be done.
