The Untold AIDS Story: How access to antiretroviral drugs was obstructed in Africa

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by Hannah Keppler

Image source: peopleandplanet.org

A few weeks ago, I watched the compelling documentary “Fire in the Blood,” an account of how Western pharmaceutical companies thwarted access of potentially life-saving AIDS drugs in Africa and the opposing grassroots effort to bypass these obstacles. I will summarize the key issues addressed in this controversial story, which also apply to the larger context of medical access in the developing world, and the roles of Western nations in global health. This article will serve as a jumping-off point for future articles, where I will explore further some of the issues that are raised.  With this article, I will try to demonstrate the problem, but you will have to stay tuned to hear about possible solutions.

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​She is  HIV positive and I love her….

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Tatenda and Thelma , one couple that made me envious and believe in perfect relationships. They were inseparable , best buddies in sync. Tatenda was the wild one in our group no woman could tame him until Thelma came along. She had interesting contrasting behaviour equally wild but more rooted in her principles. I remember getting a call from an elated Tatenda’s mom who constantly complained of her son’s  alcoholism, thanking us because for the first time her son was sober throughout  their last family vacation but all credit was to Thelma.

One day they came up with  the craziest idea of having a group HIV test. The local New Start centre was doing a self testing pilot program  and they thought it was a cool idea. We always talked about HIV but usually as something that we were immune to. Thelma was enthusiastic as usual when she broke the noble idea but everyone else was  uncertain,  and Tatenda was sweating , a give away sign of his anxiety. We all planned to go in two days but by the end of the day most of us had bailed out. We loved to think we were a careful bunch and educated enough to make wise choices, in retrospect a stupid excuse. Thelma was adamant and they wanted to take their relationship to the next level so we  promised to cheer them on.

The weather can be weird at times but I try to brush aside some of the supernatural conspiracies. It was a cloudy dark day and my mood was not helping . I got rained on. Normally I do not mind getting myself wet but on that day I  was irritable. As I got into my house I  had  about 5 missed calls from Tatenda and urgent Call me Backs were suffocating my inbox . When I called he picked up as soon as it went through and suddenly the foul mouthed Tatenda  we thought we had buried resurfaced calling Thelma all sorts of obscenities. In the midst of all this shouting I managed to pick up that he was at home and quickly called a cab and in a few minutes was at his house.

 He is not an emotional guy but the moment I set foot through his front door he embraced me  and the grown man was sobbing like an infant. He was smelling of alcohol and I had to drag him to his couch . In between sobs he informed me that Thelma had tested positive and he was negative meaning  they were discordant. I was speechless for a while. It was hard to take in but I had to act quickly. I had to ask him not to tell anyone else including other members of the crew because it was not in his position to disclose her status to other people without her consent. As he was snoring I was on my way to Thelma ‘s place. I took Tatenda’s phone with me because I could not trust what he was capable of especially when drunk.

2215 I was knocking on Thelma’s door. She peeped through the window before letting me in. She was busy on her laptop with the lights off with some depressing music in the background. I could tell she was trying hard to keep herself together. She broke the silence by offering me coffee. I did not know where to start. I just let out an anxious “How are you keeping”. She looked at me then she said probably the whole world knew by now. I assured her that no one else knew and was deeply concerned about her. She seemed to have taken her HIV result well and was already talking about pre-treatment counselling. She then broke into tears  when she mentioned Tatenda and talked about betrayal. I held her as she poured her heart out until around midnight when she was now drowsy . I left her to sleep then went back to Tatenda’s house where I  spent the night. Fortunately the next day was a Sunday. In the morning I had to endure a grumpy Tatenda who avoided discussing  what had transpired the previous day  . I encouraged them to talk about it and avoid impulsive decisions. They eventually decided to take a break and think through the implications of their new development.

The next day I asked my colleagues’ opinion on dating someone who is HIV positive when they are negative and got following responses came

“Man it’s a death sentence, I am too young to die.”

“You are suicidal.”

“That’s like marinating yourself in fresh blood then getting into a cage of hungry lions”

Most of these responses were disturbing and seemed to propagate stigma.  As much as we have done a lot of awareness campaigns most people are still pessimistic about a possible HIV infection. The sad thing was most of the people were not aware of their statuses and were reluctant to get tested. 
My friend’s response impressed me the most and reignited hope . He was a   health freak with impeccable health seeking behaviour.

He said. “ Well I would rather date someone HIV positive on treatment who is virally suppressed because I will deliberately be careful instead of being blindly with someone who does not know  their status”

This was an interesting response which I least expected . I have heard that in the developed world dating sites now recommend people to include the following information about their HIV status

  • Negative
  • Last time when you got tested
  • Negative and on Pre-exposure prophylaxis (Pre exposure prophylaxis is anti retroviral drugs taken to prevent HIV infection)
  • Positive on treatment

Positive and virally suppressed (Virally suppressed means the virus is at undetectable level in the body. When the viral load is undetectable the risk of infecting your partner is reduced)

This is a great way of fighting stigma because being HIV positive will be appreciated as normal as having any other chronic disease..

I decided to read and ask more about discordant couples and I realised we need to have the HIV conversation in a more realistic way without sweeping things under the carpet. It will help to fully address stigma and improve access to treatment. Before we had prevention of mother to child transmission a number of children were born with HIV. Yes there are people born with  HIV and these are our friends , siblings , relatives , classmates and family . Each day we hurt them with our stigma and they fall victim to bullying. Our attitude and fear towards HIV/AIDS  does not make it better. HIV has taken a new face since the 80s. With the advent of continuously improving treatment, i can be HIV positive and still live my life to the fullest.  I can also date someone HIV positive and still remain negative and have children who are HIV negative.

 I was inspired by two couples recently.  The first couple has been together for more than 15 years and the wife was HIV positive on treatment when they got married. Now they have 3 HIV negative children and the husband is still negative . In the second couple the husband got infected  but his wife remained negative .He was motivated to adhere to his medication and use protection to keep his wife negative.  They have been discordant for 7 years now . This is more possible now that we  have more options for protecting ourselves . There is  Preexposure and  postexposure prophylaxis.  Condoms  come in different shapes , flavours and styles . Getting tested is also becoming easier with the soon to be introduced self testing.  You can still have a happy and healthy relationship with someone regardless of their or your HIV status.

Tatenda and Thelma  separated for a month which was the worst period for our crew as we were used to having them around with Thelma keeping us in check. They finally realised they could not live without each and decided to go for counselling. This was reviewed  to us when we were summoned by Thelma to her house for lunch. Well the rest of the crew were not aware of everything that had taken place. Thelma  decided to disclose her status  to the crew with the help of Tatenda and also announce their engagement.  It was amazing and seeing Tatenda look Thelma in her eyes and declare ” She is HIV positive and I love her ” before kissing her passionately. 

Why I hate the “poor people are lazy narrative”.

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I often get chain messages from motivational speakers, preachers etc. explaining why some people are poor. They are labelled lazy, unresourceful, irresponsible, stupid,  do not understand the value of time and their priorities are not in  order. I have stopped reading some of the messages because of how they put poor people in a box blaming them for their situation. We are quick to judge and often ignore the role of privilege in explaining why “we are better off”

On Sunday I woke up at 3am and couldn’t go back to sleep. I tossed and turned for thirty minutes until I jumped out of my bed and walked to the window. I saw a truck deliver boxes of fresh fruits and vegetables .Close by, were a few women with baskets ready to buy fruits and vegetables for resale. It was 3am and the sun was not yet up. I imagined what time they left their houses to be able to make it into town before dawn. I sat down trying to distract myself with the current affairs; updates on the just ended Masvingo Congress, Trumps controversial appointees, the war on Allepo. Then I decided to go for jog.  5 minutes from the CBD is a lovely formerly white only neighbourhood with streets lined by Jacarandas. The morning air was filled with the sweet fragrance from the Brunfelsia latifolia  (Yesterday, today and tomorrow). I then came across a middle aged woman who works for one of the local security companies.  She was walking briskly and appeared to have a lot on her mind. I wondered what time she left her house and for how long she has already walked and this was  dawn.  Then we have the audacity to call such people lazy? Do we ever think of the time some people spend away from their families and the sacrifices they make?  Most people work hard for long hours and they earn below a descent minimum wage.

We all believe our hard work earned us our current status and we look down upon those we perceive to be inferior. We do not realise if they had the same opportunities they would have achieved more. Whilst you were being driven to a well-resourced school with air conditioned classrooms, someone walked ten kilometres to share a text book with ten other children and you all sat for the same national exam. I have met adolescents pulled out of school to work as maids and gardeners because of their desperate situations at home. I remember accusing a relative of contributing to child labour by employing a 15 year old as a helper. The girl came to her employers defence in tears and I was ashamed of my ignorance and was put between a rock and a hard place as I do not condone child labour. We are quick to judge from afar and yet do not take time to hear the full story.

I have been involved in numerous conversations where out of lack of information and ignorance  I have labelled black South Africans lazy. These are stories we hear a lot from our country folk when they visit down South. On my last trip to Johannesburg I briefly stayed with a young black hard working South African and felt it was grossly unfair to put a label on him based on prejudice. We often forget about the unequal and structural exclusion of the black people during the apartheid era which brought the social divide between white and black people in South Africa. We decide to ignore the structural barriers the black South African is trying to dismantle for equity. We forget the privilege of the white South African then we juxtapose them to black South Africans and call the black South African lazy L .

Privilege does not only take the context of race. We often joke   about Zanu privilege with some friends. By virtue of being politically well connected some people have acquired farms, companies, scholarships and control of some resources.  Their children have started better off than the ordinary person. Some parents have worked hard for their children to have a better life and more privileges that they ever had. Reflecting on their hard work that gave us some advantages may influence the humility and integrity that makes one appreciate the need for social justice and equity.

Most developing countries are often labelled poor. Does it mean we are all lazy? Have you ever wondered why the so called developed countries are rich? Is it because their population is more hard-working?  Why is it in some developed countries the minority groups are the ones mostly affected by poverty? All these questions should make you realise that poverty cannot be explained by labelling all the affected people lazy. You are ignoring the structural injustices, exploitation and Capitalist environments that favour success of the elite at the expense of the poor. As I am typing this I hope I have not adopted a condescending tone.

We need to fight off the inferiorities and insecurities that we were systematically socialised to believe. We need to realise that we are hardworking people who can build our communities and countries. We should often reflect on our own privilege to fight for social justice, preferential options for the marginalised and above all not use the power that comes with privilege to exploit others