That memorable moment
A number of people have over the years played a role in the development of the TAC and our battle for antiretrovirals. There are too many to mention. In the following pages a small group of people who played a role in one way or another and represent various constituencies, share their recollections of the past and their dreams for the future.
There are particular moments in one’s life when a memory stands out with clarity and emotion against the background noise of accumulated memories: It’s 30 November 2003 and I’m looking with excitement into the pharmacy cupboard at GF Jooste Hospital with colleagues Eula Mothibi and Mohammed Sonday. Neatly stacked there are hundreds of ARV medication containers that had been delivered earlier in the day.
This was the first medication supply that would be provided to patients at an ARV clinic at the hospital, supported by the Nelson Mandela Foundation and the South African Medical Association. The rollout would be launched by former President Mandela the following day (a few months ahead of the National Department of Health rollout). Prior to this, ARVs had been accessed by some patients in our communities through NGO programmes in Khayelitsha and Gugulethu, and within research studies.
We knew the immense potency that lay in that cupboard – to save lives and restore health. These ARVs offered a real chance of reversing the relentless march of the virus against the immune systems of our patients. For the preceding few years we had watched, largely helplessly, as patients died in our medical wards, without access to treatment. In our ARV clinic over the next months we witnessed patients with advanced AIDS, some with single-digit CD4 counts, being restored to life, their strength returned, their moods and hopes rejuvenated, smiles and laughter reappearing, their bodies transformed from the skeletal frames they had when they started the ARVs. Today, many of those people are completely healthy because of the ARVs that they have taken daily with near perfect adherence – a daily ritual and observance that has been life sustaining.
Yet despite the widespread scale-up of free ARV treatment that now has fewer side effects and is easier to take (one pill a day in first line), we still see people with advanced AIDS being admitted to our hospitals. Many have started then stopped their ARVs or have not managed to take ARVs with the exacting adherence requirement needed to prevent the emergence of resistant virus.
In truth, it is an extremely difficult task for someone to take medication every single day for the rest of their lives, and not falter when their lives are disrupted by personal crises or social upheavals around them. This reality is, perhaps, the saddest aspect of the HIV epidemic today: We have ARVs that do restore and sustain immune function and can lead to a normal quality of life and life expectancy when taken with excellent adherence, yet some people do not manage this, struggling with the need for regimentation and medicalisation of their lives. Initiatives to take ARVs out of the clinic and integrate them within communities (such as ARV clubs) are an important innovation, making it easier for people to stay on the medication with good adherence within a peer-supported environment. But as a society we need to explore ways to better support people who need to take ARVs for their rest of the lives, to make this a collective effort.
From the perspective of the healthcare system we need to innovate continually, and discover therapeutic approaches that make it easier for people to take medication with good adherence, and that reduce the risk of viral resistance emerging. We should aim for a point at which no one with HIV infection dies from AIDS; we are still a long way from this.