Dear Nkosi

By – Anso Thom

It has been 15 years since you exhaled for the last time, you would have turned 27 this year. I would imagine it was a relief…a long breath that spoke of having carried a heavy burden and responsibility in your much too short life.

You were the Hector Peterson of the HIV generation in the 80s and 90s, a reluctant hero and activist who smiled bravely when you first hit the headlines after your primary school were grappling with how to deal with your disease.

The rest, as they say, is history.

Nkosi Johnson
Nkosi Johnson

You spoke out often, your words speaking of an old soul that has experienced way too much, seen way too much with your big, beautiful eyes.

I recall the iconic image of you standing on that huge stage at Kings Park Stadium, the dark suit hanging onto your fragile and tiny frame. But your big heart was there for all to see. You had been rehearsing your speech for weeks, understanding and knowing that what you said would be important…I remember how excited and nervous you were at the thought that then President Mbeki would be in the audience, but I also remember your profound disappointment when you realized he had walked out before you had completed your speech. But Nkosi, you did not need for him to be there, thousands heard you, millions continue to repeat and hold onto those words that continue to reverberate around the world. Your speech touched so many:

Hi, my name is Nkosi Johnson. I live in Melville, Johannesburg, South Africa.
I am 11 years old and I have full-blown AIDS. I was born HIV-positive.

When I was two years old, I was living in a care centre for HIV / AIDS-infected people. My mommy was obviously also infected and could not afford to keep me because she was very scared that the community she lived in would find out that we were both infected and chase us away.

I know she loved me very much and would visit me when she could. And then the care centre had to close down because they didn’t have any funds. So my foster mother, Gail Johnson, who was a director of the care centre and had taken me home for weekends, said at a board meeting she would take me home. She took me home with her and I have been living with her for eight years now.

I know that my blood is only dangerous to other people if they also have an open wound and my blood goes into it. That is the only time that people need to be careful when touching me.

In 1997 mommy Gail went to the school, Melpark Primary, and she had to fill in a form for my admission and it said does your child suffer from anything so she said yes: AIDS.

My mommy Gail and I have always been open about me having AIDS. And then my mommy Gail was waiting to hear if I was admitted to school. Then she phoned the school, who said we will call you and then they had a meeting about me.

Of the parents and the teachers at the meeting 50% said yes and 50% said no. And then on the day of my big brother’s wedding, the media found out that there was a problem about me going to school. No-one seemed to know what to do with me because I am infected. The AIDS workshops were done at the school for parents and teachers to teach them not to be scared of a child with AIDS. I am very proud to say that there is now a policy for all HIV-infected children to be allowed to go into schools and not be discriminated against.

And in the same year, just before I started school, my mommy Daphne died. She went on holiday to Newcastle- she died in her sleep. And mommy Gail got a phone call and I answered and my aunty said please can I speak to Gail? Mommy Gail told me almost immediately my mommy had died and I burst into tears. My mommy Gail took me to my Mommy’s funeral. I saw my mommy in the coffin and I saw her eyes were closed and then I saw them lowering it into the ground and then they covered her up. My granny was very sad that her daughter had died.

I hate having AIDS because I get very sick and I get very sad when I think of all the other children and babies that are sick with AIDS. I just wish that the government can start giving AZT to pregnant HIV mothers to help stop the virus being passed on to their babies. Babies are dying very quickly and I know one little abandoned baby who came to stay with us and his name was Micky. He couldn’t breathe, he couldn’t eat and he was so sick and Mommy Gail had to phone welfare to have him admitted to a hospital and he died. But he was such a cute little baby and I think the government must start doing it because I don’t want babies to die.

Because I was separated from my mother at an early age, because we were both HIV positive, my mommy Gail and I have always wanted to start a care centre for HIV / AIDS mothers and their children. I am very happy and proud to say that the first Nkosi’s Haven was opened last year. And we look after 10 mommies and 15 children. My mommy Gail and I want to open five Nkosi’s Havens by the end of next year because I want more infected mothers to stay together with their children- they mustn’t be separated from their children so they can be together and live longer with the love that they need.

When I grow up, I want to lecture to more and more people about AIDS- and if mommy Gail will let me, around the whole country. I want people to understand about AIDS- to be careful and respect AIDS- you can’t get AIDS if you touch, hug, kiss, hold hands with someone who is infected.

Care for us and accept us- we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else- don’t be afraid of us- we are all the same!”

(An extract from his speech delivered in July 2000).

I remember how excited you were at traveling to the United States to meet Robin Williams who you said made you laugh. You always loved jokes…you would tell the worst jokes and laugh the loudest. I think that is where my son got his crazy sense of humour from!

Do you remember when you once visited us in Cape Town. You were so sick already and I remember waiting for you at Cape Town International Airport and having to hide my shock at seeing how much you had deteriorated…the crust of thrush sitting thick around your lips, the windbreaker completely dwarfing your frame. You were so excited to be in Cape Town and immediately wanted to go and eat ribs – you ordered the biggest rack of ribs only to stare at it and asking if we could take it home. The thrush was so bad that it was impossible for you to eat most food. The diarrhoea became to severe that we rushed you to our doctor where she put you on a drip to tide you over even though you should have probably been in hospital.

You loved music so much, one of your favourites the soundtrack from The Commitments…You would listen to it over and over again and of course my CD went home with you!

Do you remember us going to the Carols by Candlelight at Kirstenbosch? You managed to get us a ride on the golf cart, all the way to the lawns where you lay in our laps, covered in thick blankets and singing each carol at the top of [your voice. Your look of amazement when you looked back and saw the sea of candles will always stay with me.

Nkosi, on 18 July we will all return to Durban. Some of us are returnees, others are newbies who joined the HIV activist bus along the way. I want to promise you that we will not go to Durban and accept empty rhetoric, lofty promises and articulate but empty political speeches. No, we will go to Durban expecting to live up to your dream where no child is born HIV-positive, no child needs to be separated from their mothers because of disease and poverty and stigma is just an ugly swear word.

This will be a conference where the South African government will hear your message, this we owe to you and to the many other children who faced the same fate.

Lala Kakuhle gentle, beautiful warrior, we will feel your presence in Durban we will carry you in our hearts and songs.

All our love, admiration and respect.

ANSO THOM is the Head of Communications at SECTION 27 and an editor of Spotlight.

Is HIV elimination a pipe dream?

 by Dr Leigh Johnson –

 

A number of UNAIDS publications have promoted the idea that it is possible to “end the AIDS epidemic by 2030”. There are several encouraging signs to suggest that this may be true. It is now well-established that patients who are on antiretroviral treatment (ART) and with suppressed viral loads are virtually non-infectious.With the recent revisions to WHO treatment guidelines, which now recommend ART for all HIV-positive individuals regardless of CD4 count or clinical stage, it is theoretically possible that a high proportion of HIV-positive individuals will be treated. This could drive down HIV transmission rates to very low levels. UNAIDS has stated that critical to HIV elimination will be the achievement of the ‘90-90-90’ targets: by 2020, 90% of the HIV-positive population needs to be diagnosed, 90% of diagnosed individuals need to be on ART, and 90% of patients on ART need to be virologically suppressed.

But how likely is HIV elimination? Central to answering this question are mathematical models, which attempt to predict the future based on observed historical trends in HIV prevalence, and based on assumptions about the effect of different HIV prevention and treatment strategies on HIV transmission. This article briefly reviews some of the recent modelling studies that have attempted to answer this question, and discusses some of the limitations and uncertainties associated with modelling.

The first point to note is that the term ‘HIV elimination’ is a misnomer. Most frequently, modelling studies refer to ‘virtual elimination’, which is conventionally defined as an adult HIV incidence rate of less than 0.1% per annum. But even if HIV incidence among 15-49 year olds were constant at 0.1% per annum, the long-term HIV prevalence in 15-49 year olds would not drop below 1.7% (assuming a relatively high ART coverage and a near-normal life expectancy on ART). This is still an appreciable HIV prevalence, even by the standards of many countries in West Africa.

Even if we accept this definition of HIV elimination, mathematical models are not conclusive about whether universal ART eligibility and high rates of HIV testing and ART uptake (so-called ‘test and treat’ strategies) would lead to elimination. In a systematic comparison of several different models that were applied to South Africa, Eaton et al found that out of nine models, six suggested that ‘test and treat’ strategies would not be sufficient to achieve virtual elimination by 2050. Notably, the models were generally quite optimistic about the extent to which ART would reduce HIV infectiousness (in all cases by 90% or more), though a subsequent systematic review of observational data estimated an average reduction of only 64%. It was also subsequently found that almost all the models had under-estimated the HIV prevalence that was measured in a South African household survey, conducted after the initial model projections were published. Although this points to the fallibility of mathematical modelling, it is perhaps more important to note that the models generally did not show that HIV elimination was a likely outcome, despite erring on the side of optimism.

A question that naturally follows is whether a ‘test and treat’ strategy might achieve HIV elimination when combined with other HIV prevention strategies. In a recent study, we attempted to address this question for South Africa by projecting future HIV incidence trends using a wide range of different intervention scenarios. This study predicted that – given the current uncertainty around HIV prevention and treatment programmes in South Africa – the virtual elimination target of 0.1% would be reached by 2035 in only 2% of scenarios (Figure 1). The model also predicted that although South Africa would probably reach the first 90% target by 2020, the second and third 90% targets were quite unlikely: in only 0.4% of scenarios were all three targets met.

Figure 1: HIV incidence trends in South African adults aged 15-49
Figure 1: HIV incidence trends in South African adults aged 15-49

Solid lines represent mean of model estimates. Dashed lines represent 95% confidence intervals (taking into account uncertainty regarding future epidemiological parameters). Shaded grey area represents virtual elimination threshold. Source: Johnson et al

This study also assessed which epidemiological parameters it would be most important to focus on in order to reduce HIV incidence. The most important parameter was the rate of virological suppression in ART patients: for every 10% increase in the fraction of ART patients who are virologically suppressed, it was predicted that there would be a 14% reduction in the average annual number of new HIV infections. This implies that increasing rates of virological suppression in South African ART patients from the current level of around 77% to the 90% target would achieve an 18% reduction in HIV incidence. Other parameters that were significant included the rate of condom use in non-cohabiting relationships, the introduction of intensified risk-reduction counselling for HIV-positive adults, and the uptake of medical male circumcision. Interestingly, the timing of the change to universal ART eligibility was only the 5th-most important parameter. This suggests that the recent change to universal ART eligibility is not by itself likely to have as dramatic an impact on HIV incidence as many other interventions.

The case of South Africa stands in stark contrast to the case of Denmark, the subject of another recent modelling study. In this study, it was estimated that in 2009 the HIV incidence among Danish men who have sex with men (MSM) was 0.14% per annum, very close to the virtual elimination threshold of 0.1%. Although the fraction of HIV-positive adults in Denmark who were diagnosed was very similar to that estimated in South Africa (around 80% in 2013), the fraction of diagnosed individuals on ART was 92%, and the fraction of ART patients who were virologically suppressed was 98% – both well ahead of South Africa (Figure 2).

Figure 2: Treatment cascades in Denmark and South Africa in 2013
Figure 2: Treatment cascades in Denmark and South Africa in 2013

As the authors of this study note, Denmark is exceptional. In many other high income countries, there has been a resurgence in HIV incidence among MSM, despite increasing levels of ART coverage. This resurgence is often attributed to risk compensation and ‘disinhibition’, i.e. increased levels of sexual risk behaviour due to reduced fear of HIV in the era of highly effective therapy – and perhaps also reduced public messaging around safe sex as the HIV response has become increasingly medicalised.

Taken together, these results suggest that treatment alone is not going to end the HIV epidemic, although it might be possible in concentrated epidemic settings with exceptionally high levels of virological suppression. It will be important not to neglect the ‘traditional’ HIV prevention strategies in the pursuit of the 90-90-90 targets, and the allure of new prevention approaches should not detract from the need to sustain and improve existing programmes. But even with co-ordinated strengthening of existing programmes and introduction of new prevention approaches (such as universal ART eligibility and pre-exposure prophylaxis), it is unlikely that virtual elimination will be achieved in hyper-endemic settings such as South Africa within the next 20 years. Even if ‘elimination’ is achieved, there would need to be continued high levels of HIV testing and HIV prevention messaging over the longer term if a resurgence in HIV were to be avoided. Achieving true elimination will require fundamentally new technologies such as HIV vaccines. Until we have these in place, HIV elimination needs to be seen as an aspirational ideal rather than a practical target.

DR Leigh Johnson is a Researcher at the Department of Public Health & Family Medicine for the University of Cape Town.