There is a quiet intensity that envelops Treatment Action Campaign Deputy General Secretary Vuyokazi Gonyela. It immediately draws you in, making you viscerally aware that this is someone of significance. She is from a village called Diphala, in Whittlesea nestled on the rolling hills of the Eastern Cape, but currently resides in Johannesburg.

She comes from a family of healthcare workers and at an early age the principles of healthcare were instilled in her by her mother and aunt, both community healthcare workers. She credits them for nurturing the health activist in her which, she says, needs to emanate from a place of love of helping people.

Gonyela remembers returning from university in 2003 and being told by her sister, who was in high school then, about a group of people who wanted to form an organisation called TAC that advocated for access to HIV treatment. She decided to become a member so that she could learn more.

She was soon appointed as one of TAC’s first five prevention and treatment literacy (PTL) practitioners, volunteers who visit clinics educating people about HIV/AIDS, STIs and TB. 

“That was the most powerful programme as we even capacitated healthcare providers who had no idea of how to manage HIV.” 

She admits that it was not smooth sailing:

“We sometimes met with denialist health care workers, stigmatisers and discriminators as we accompanied people with advanced TB and HIV to access services.”

She says when the TAC spoke about the science of HIV and TB they were unrivalled. They talked knowledgeably to people about sexually transmitted infections, their symptoms and available medication. She says being a PTL practitioner catapulted her to positions of leadership, adding that she is a “born leader”. 

Gonyela was elected to positions such as provincial chairperson of Eastern Cape TAC which led to her sitting on the TAC national council, all before the age of 20. 

But it was not easy.

“As a young, black provincial leader I had to deal with all kinds of humiliation, to being reduced to a nobody because I do not fit into their stereotype boxes of leading by age. I still deal with some male leaders who never want to listen to female leaders speak.” 

She recalls a day where she attended a provincial health portfolio meeting where the chairperson, on seeing her, said, “He will not sit in a meeting where an organisation sends children”. 

She says that she always stands her ground and is guided by the principles of non-sexism and non-racism espoused by the TAC.

Vuyokazi lives openly with HIV. She does not shy away from discussing this and the impact that it has had on her. 

“I have no bad experience except for when people look at you as if you don’t look like HIV. I mean, I have been in spaces where others would call me on the side to re-engage with my status hoping that I will say something else or tell them what they want to hear. 

“I have never been too sickly to an extent that people felt sorry for me. I have never had opportunistic infections like TB or any serious illnesses so my life has never been of a person who needed extra support and care. Many people still don’t associate me with HIV despite the fact that I worked for a movement that advocates for access to quality health and HIV services. 

“My treatment literacy background has helped me to robustly engage with my doctors… and that has helped me make decisions that are good for my body and my general health.” 

One can’t help but admire these confident and considered responses and hope this will encourage others to adopt a similar approach towards living with HIV.

In a moment of tenderness, she says that her “two beautiful boys” are a result of access to antiretroviral medicines that prevent mother-to-child HIV transmission, which the TAC fought for all the way to the Constitutional Court. She credits her partner as having been an amazing “treatment supporter”.

Gonyela is also a traditional healer and says that part of what compelled her to help people may have been due to this spiritual calling. She says this has put her in a better position to meaningfully engage with and assist people in rural areas who subscribe primarily to traditional healing. 

She says traditional healing and Western science have complementary roles and that it is key to know when HIV-related illness treatment methods need to intersect with traditional medicine. 

As for her plans for the future: 

“I don’t want to be a politician and confuse people, I am not looking for validation. I was born to save people’s lives and that’s what I want to continue doing. 

“I am currently part of the People Living with HIV/AIDS interventions called the Ritshidze project (Saving Our Lives). This initiative is run by PLHIV through monitoring quality and services accessed in health facilities by PLHIV and other ‘Key Populations’ [a term referring to people with a higher vulnerability to HIV infection, including sex workers, young women and men who have sex with men].” 

She wants to continue to be part of this initiative and see that it produces other community-based initiatives “before HIV/AIDS takes over our lives”.

Gonyela states emphatically, “I want to remain true and honest to the cause of working with communities in order to improve the state of health. Maybe in years to come I want to go back to Eastern Cape and duplicate what is done by the project in areas where it has no reach. 

“Activism requires leaders with morals and principles and that’s the person I want to remain. I don’t want to be rich, I want people to come to me when they need assistance, I want those in authority to recognise the existence of the ordinary citizens they are meant to service. I want to remain a black woman from the village and respect people for who they are.

“Status is not everything but my efforts should speak for me.”

It is easy to see why Gonyela is often referred to as a powerhouse leader: her passion is unmistakable in every word she utters. Her dedication to helping people access healthcare was clear even as a 20-year-old volunteering from rural Eastern Cape. Since then she has been a provincial organiser and part of the national capacity building team, running national and regional training. 

Over the past 17 years, she has amassed an impressive national and international profile as an HIV/TB and human rights activist. In  2017 she was elected the deputy general secretary of TAC, a position she still holds. 

It’s clear that activism and service to people is where her heart will always lie. MC