MAVERICK CITIZEN REFLECTION
Taking part in the Covid-19 vaccine trial is giving me life and hope
A veteran HIV/Aids activist signs up for the Covid-19 vaccine trial at Wits University’s Shandukani Research Centre in Hillbrow and discovers hope, commitment and ghosts of activists passed away.
I would not be telling the truth if I said I am an avid reader of The Lancet or any other science journal, or that I know what I am talking about when I read about a protocol described as:
“An adaptive phase I/II randomised placebo-controlled trial to determine safety, immunogenicity and efficacy of non-replicating ChAdOx1 SARS-CoV-2 vaccine in South African adults living without HIV; safety and immunogenicity in adults living with HIV.”
But it is true that my attention was drawn to this trial when I saw a Facebook post by Professor Francois Venter, director of Ezintsha and a close friend and activist doctor. In the post, he spoke about his experience in taking what could either be a placebo or a candidate vaccine after becoming a volunteer in the ChAdOx1 SARS-CoV-2 vaccine trial.
I know Francois Venter because it was on his shoulder that I cried when Treatment Action Campaign (TAC) activist Sarah Hlalele died in April 2002. Francois was one of the many medical activists who played a critical role in bringing science to bear on the response to HIV, thereby supporting our struggle against the denialist government of former president Thabo Mbeki and the then department of health.
Back in the early 2000s, he supported us in a protest to ensure that the HIV clinic at the then Johannesburg Hospital (now Charlotte Maxeke) remained open. I remember being gobsmacked when, in meeting the management of the hospital after handing over a memorandum, he said: “Not using antiretrovirals to treat people living with HIV is like treating diabetes without insulin.”
He was there, too, holding my hand, when another TAC activist Charlene Wilson died in 2003 at Helen Joseph Hospital in Johannesburg.
In those days, Helen Joseph was the go-to hospital for TAC activists – in fact, it was one of the few hospitals where people with AIDS could receive quality care. The infection control centre was headed by the deeply caring Sister Sue Roberts. Under her, it was a place of excellence and care in treating opportunistic infections associated with HIV.
Today, the clinic at Helen Joseph is where tens of thousands of people get their antiretrovirals. But back in those days, all South Africa was offering – as people died prematurely of AIDS – was treatment for thrush and related opportunistic infections. Why? Because thousands of people were being denied antiretrovirals by the health minister and the then-president who refused to “follow the science”.
The rest is history.
That is why I am a fundamentalist when it comes to respecting science and understanding its power to help change the world.
And that is why I ended up calling the number that was advertised among Francois’ many other Facebook posts, mostly about his cats.
Enlisting on the vaccine trial
I called on 21 July and told the person who answered the phone that I was interested in participating in South Africa’s first clinical trial for a vaccine against Covid-19. Her response was efficient, friendly and knowledgeable, and equipped me with enough information to want to find out more.
I was asked to come to the Wits RHI Shandukani Research Centre, whose name is derived from the Venda word for change. Maybe, I thought, we need to change the name of South Africa to Shandukani.
On July 22, I arrived at the Wits Reproductive Health Research Unit, another former stomping ground of the now veteran TAC activists. I remembered that this was where we attended many workshops and engaged with scientists like Francois who taught us HIV science.
From the moment I entered the building I was struck by the efficiency with which healthcare workers and their assistants ran the place, like ants building their nest. They risk Covid-19 infection on a daily basis, yet they infect you only with their laughter and love.
Clearly a team that gives a damn. No tribute can do justice to the immense and selfless contribution that healthcare workers around the globe are making in efforts to save lives and contain the spread of Covid-19.
At the point where I began contemplating being a volunteer on the trial, I had hit a brick wall with complying and existing in a world contaminated by Covid-19.
I must admit, like many others, I was depressed and worn out.
But Shandukani is not only a place where change is tangible – there is hope as well. With the political will and leadership that goes into running this trial, the positivity is very real. It looks like a well-oiled machine running to plan. Files are updated with mountains of notes taken, and time is spent talking to each and every person who makes the effort to enquire about volunteering.
I felt like an important human being. And on both days, there were streams of people coming in to be considered for the trial, including many older womxn like me. I was also told the response from healthcare workers wanting to join the trial was phenomenal.
Obtaining informed consent
Day 1 was made up of meetings, briefings, pages and pages of information and filling out details; pre-screening tests for Hepatitis B, sugar levels, blood pressure, HIV and pregnancy tests, and so on. The rigour of the process to ensure participants give informed consent left me exhausted but inspired. Over and over I was given information, then asked if I understood the basics of what the trial is about.
“Testing for antibodies”, I can now confidently say. I was informed both verbally and in writing that the trial is “assessing if adults living with and without HIV in South Africa can be protected from Covid-19 with the new vaccine called ChAdOx1 nCoV-19.
The trial is also about “safety aspects of the vaccine and its ability to generate good immune responses against the virus”.
Participants are randomly allocated a placebo (meaning a treatment that looks like a regular treatment, but is made with inactive ingredients that have no real effect on patient health. Placebos are used in some clinical trials to help make sure results are accurate) or the actual vaccine. You don’t know which of the two you are getting, and nor do the scientists until the trial is “unblinded” much later on.
All eventualities were covered, from being asked whether I was being forced to partake in the trial, to doing a written test on the spot to ensure that I was consenting from a place of being informed.
Every person who walked through the doors went through exactly the same procedure.
It felt significant for me that I volunteered to be part of this trial at a site located in what was once Johannesburg’s capital suburb – Hillbrow. I stomped the streets of Hillbrow as a young Marxist activist in the early 1990s. Friday afternoons would see me taking off my boots and sitting down at the Jungle Inn on the corner of Pretoria and Klein streets. Our table would be covered in pints of beer because it was happy hour and you could buy one and get one free.
Today, these buildings are bricked up and sealed to ‘protect’ them from homeless people seeking shelter from the freezing cold and rain. Landlords fear they will bring down property values. So they must suffer a life of indignity on the streets. It made me shudder.
Day 2 back at the Shandukani clinic was celebratory. My Covid-19 test was negative (obviously a non-negotiable condition for enrolment because the trial is to see whether a vaccine protects you from infection) and I got the jab.
Now I hold my blue file with my mask, thermometer and sheets of tables that I have to fill out every day as I monitor the spot on my arm where I got the injection. I have a personal digital number to ensure confidentiality. I feel empowered and informed.
Humans armed with science can change the world. This is how life should be.
I find it hard to believe that I can still find things that make me feel proud to be South African at this point in time, as we fight chronic inequality. Maybe in future, Francois and his team of doctors and nurses can find a vaccine to fight poverty and xenophobia.
Qualifying to be a participant in this trial has given me a new lease of life. The struggle continues. DM/MC
Sharon Ekambaram is a human rights activist and the manager of the Refugee and Migrant Project at Lawyers for Human Rights.
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