A lot of young girls in South Africa lovingly call her ‘Mama’ because of the very important role that she plays in their lives. Sibongile Tshabalala is a social justice activist who fiercely advocates and fights for accessible HIV treatment for some of the most marginalized groups. She is the chairperson of the Treatment Action Campaign (TAC) and also the second Deputy Chairperson of the South African National AIDS Council (SANAC).

Diagnosed with HIV in 2000, Sibongile not only fought the disease, but also broke many stigma barriers that she faced during her early days of activism. While the challenges are still not over, she has definitely helped redefine health activism and hopes that the future will be better. 

This World AIDS Day, in a conversation with Rotary Family Health and AIDS Prevention (RFHA), Sibongile shares her journey and plans for the future.

When and Why did you join TAC?

I got involved with TAC in 2009. I came to know about it when I was collecting my medication from a local clinic. I needed more information on HIV and I kept asking a lot of questions on how we can fight this and what can I do? My doctor suggested that I join TAC. And that is how my journey here started.

I was diagnosed with HIV in 2000 and experienced a lot of side effects/illnesses because of it. I was bedridden and stayed in a hospital for a month. There were no antiretrovirals (ARVs) in the country at that time. I suffered for about six years. When again in 2006, I was hospitalized, I started with the ARVs and it was then I realized I can survive and can live longer. If one could remember, those days when we had no ARVs, doctors would give anything to assist you, but there would be no surety that it will help you survive HIV. It was also a time when we had lost so many people to HIV. 

All these reasons made me join TAC to help many others like me.

How do you think the TAC has helped to redefine the activism around HIV and what changes has it brought about over the years?

TAC was launched in 1998 and it was a time when most of the people in South Africa were living with HIV and there was no treatment especially for those that were poor. HIV stole so many members of families in Africa. The TAC activism helped in mobilizing people from the communities, provided treatment literacy and helped people understand the science of HIV in simplified words. A lot of development has been made in terms of how we respond to HIV and treatment over the past 24 years. 

Imagine living in a time when there were no treatments and now, we have reached a stage where we have a lot of preventive methods and people can get ARVs which gives them the hope and faith that they can live longer.  

Can you share something about the different TAC campaigns and the strategy behind them?  

With each and every campaign, our goal was to fight against discrimination and stigmas around HIV. We ran a campaign called ‘Save Our Babies’. Children were dying of HIV every second and with the help of TAC, we helped bring the infection rate down to zero or less than a 1%. 

For women living with HIV, our rights to reproductive health were taken away. We were not allowed to have a baby and in the case where an HIV positive woman gets pregnant, the family and the society would shun you out…treat you as if you are less human. We have seen cases where women who had HIV, were sterilized without their consent. 

Another campaign we did was we wore t-shirts with ‘HIV Positive’ written on them and the idea behind it was to spread the message that it is not the end of the world and we need to fight the stigma. In those days we had cases where people were stoned to death by their community members if they disclosed their status. Fighting this stigma was our focus.

We have also marched outside the court so that people see and understand the need for treatment. We also did a ‘Treatment For All’ campaign. We were calling everyone who was HIV positive to come and get the treatment. When ARVs came to the country, people were put on a waiting list to receive it. But HIV is not going to wait. So, while people were on a waiting list, HIV continued to take many more lives. With the ‘Treatment For All’ campaign, we aimed to reach everyone with the treatment they needed. 

How challenging was it for you, talking about and playing a leadership role on a complex subject like HIV, especially when there was so much stigma around it?

My journey in campaigning for HIV has been very challenging. When I lost my husband to HIV in 2005, there were already rumours in the community and then to disclose my status to my family, it just added to challenges I was facing at that time. People would come up and ask weird questions and I had to develop this skill - a wall around myself - to face those questions. When I joined TAC, I realized it is just not easy to be a woman leader in Africa. You are not given the same respect as a man would get. Taking directions is not taken positively by the male members of our society. Each time, I had to prove myself and show that I could represent the people with HIV. And I still face those challenges. 

Talking about women’s health, how difficult has it been to reach out to young girls and women? 

I work mostly with girls and I mentor them and encourage them. A numbers of women that I talk to, call me ‘Mama’, because they feel I have played the role of being a mother in their lives. I always try to be their friend first, try to listen and understand their problems. Most of the times, young people just need somebody they can talk to, someone who can just hold their hands and assure them that they are not alone in this journey.  

How was your experience being at a Rotary Family Health Day in South Africa recently?

It was the first time I attended the program in South Africa and I feel it is so important as RFHD is helping bring the services to the communities in Africa. It is also giving an opportunity to the communities to engage with other officials. We really appreciate what RFHA is doing for the communities in Africa as access to healthcare services is a big challenge and HIV prevention and testing is such an important service they are providing.

What campaigns are you currently focussing on?

This year, we are advocating for equal quality healthcare services for everyone so that when a person visits a healthcare facility, they feel welcome. The aim is to equalize services to fight HIV. We need to treat everyone equally, integrate all the services. If someone is still stigmatized because of their gender, sexuality or economic status, then we still have a problem. So, we have to work to equalize the system, equalize the services and equalize the information that is provided to the people. 

What inspires you to stay positive?

Working with the communities inspires me. And the response that I receive from the people keeps me going. My family has been a huge support to me in this journey. There are days when I feel low, but the support I receive from the people I work with and my family, helps me get back in the field and continue fighting for our rights.