Bringing Hope and Visibility to HIV Care
One of South Africa Partners’ longest-running projects has been to develop and implement HIV/AIDS care and support services to people throughout the country.
Helping in those efforts for the last 13 years has been Thembi Ngubane-Zungu, who began working with South Africa Partners in 2003.
Thembi spent her early career as a nurse, working at King Edward VII hospital in Durban in clinical and critical care nursing. Since 2001, she has been an advocate for national and global initiatives around the rights of people living with HIV, first with the National Association of People Living with HIV and today with South Africa Partners.
“In the mid-1990s, as a person who was struggling with a new diagnosis of being HIV-positive, I was searching for role models,” says Thembi, now Deputy Country Director for South Africa Partners. Here, she talks about the importance of visibility and hope for people living with HIV.
In 1996, the U.S. basketball star Magic Johnson announced he was HIV positive. This was big news in the U.S. — very few people, that well known, were public about their status. Five years later, Johnson traveled to South Africa for exhibition basketball games and candid talk about HIV. This was big news in South Africa, too. What was the impact of his visit?
For me, it was about HIV. I had been HIV-positive for several years, having accidentally pricked myself with a needle after giving an injection to a baby who turned out to be HIV-positive. I was impressed that Magic Johnson had disclosed his status and I was particularly interested in how he was coping and what kind of medication he was using.
In South Africa in 1996, HIV was still equated to a death sentence, because the state was not providing any care. You got a diagnosis and you would only get back to the hospital when you were sick.
When I saw Magic Johnson, I saw hope. Even though he was miles away from me, the fact that he spoke out about it meant we were going somewhere.
When did you start your own treatment?
Around 1998 I called the doctor who was running the first clinical trials in South Africa for HIV. He said that the whole package of highly active antiretroviral therapy [ART] would cost around 4,300 Rands [$300] per month.
I was really struggling, because I had some medical aid at that time, but it didn’t cover that amount of chronic medication. Without treatment, I knew my chance of surviving this disease was limited. All I could really do was just try to go back to work and cope. I had a one year old son, and I needed to stay positive.
It was in 2002 that I was visiting my doctor and he smiled and said, “I’m so glad you’re here. I’ve got a double blinded clinical trial study. Are you interested?” And I said, “When can I start?”
I have been on ART [antiretroviral therapy] since then, and my viral load, like Magic Johnson’s in 1996, is still undetectable.
You were private in those early years about your HIV status, and now you’re open about it. What changed?
Just before I started my clinical trial in 2002, I got to know a man named Tanduxolo Doro. The Port Elizabeth municipality trained a group of us who worked as nurses at the Port Elizabeth clinics to be HIV-AIDS / STI counselors, and people who were open about their status where invited to speak to us. Tanduxolo was one of them. He was working with the National Association of People Living with HIV, which was a national NGO [non-governmental organization], and he was one of the first people who was living openly with HIV who I actually got to talk with.
I had told so few people about my status. I had seen a lot of my close friends getting ill and even dying, and no one was saying they were HIV-positive. I would talk to Tanduxolo about my fears of getting sick. He was someone who had walked the path, someone I could relate to, and I really learned a lot from him. He gave me hope.
He invited me to work at his organization. I was so excited about the opportunity, but I was nervous, too. It would mean leaving my work as a nurse and would probably mean being open about my status. I was in a sort of Catch 22. I thought there should be more openness, but I did not want to be known as that person who was HIV-positive.
You were not quite ready to be a role model.
I wasn’t. But I started attending National Association of People Living with HIV meetings, and I started seeing people young and old sharing their stories. I always just listened, never talked.
Finally I decided that this was an opportunity I wanted, to become the provincial coordinator of the largest advocacy group of people living with HIV. And I knew come hell or high water, I was going to disclose. This was my journey.
I handed in my resignation, but I still didn’t know what to say to my colleagues. I knew that when I told them where I was going they would put two and two together. Many of these people had gossiped about other people that they thought had HIV. I just said I was leaving and told them where I was going. I knew they liked me, even loved me, but no one asked a question.
So you joined the National Association of People Living with HIV (NAPWA) as provincial coordinator, still private about your own status. What happened next?
I resigned on September 1, 2001, and the news that I was joining NAPWA traveled so fast. Almost immediately, I was seen as a potential speaker. Within a few weeks, I was invited to a small event, and there I disclosed. And people’s faces were blank. I asked a woman afterwards why she had become so quiet, and she said “because we were shocked.” I thought, shock, fine, this will pass.
For my second event, there was a whole hall of people. As I was speaking, I could feel that people were crying in the audience. I think they were crying because they thought I was going to die, but also because I was challenging the profession of nursing to not discriminate against HIV-positive clients and to practice universal precautions rather than judging a patient on what they have.
But it was the third speaking engagement that really was big. It was a national conference, attended by nurses who were members of the Democratic Nursing Organisation of South Africa (DENOSA) from all over South Africa. The theme was something like Nurses and Midwifes Facing the Challenge of HIV/AIDS. That speech also was about encouraging people not to judge their patients and not forget that we are there to nurse them.
In three months you went from being closeted about your status to being a very public activist urging compassion for people with AIDS.
Yes. When I finished speaking at the DENOSA National conference, the whole center was standing up and clapping. It was like I went into a trance, and when I lifted my head up to say thank you, I thought, “What has just happened?”
I think I was able to get people to think about things in a way they hadn’t thought about them. I was using my own profession to say, “Enough. I have seen my friends dying. I have seen them stigmatized. Enough.”
How did you end up joining South Africa Partners?
In my job with NAPWA I had links with the provincial department of health in the Eastern Cape. South Africa Partners had started its partnership with that department several years earlier, and in 2002 I met with a contingent of people visiting from Massachusetts who were interested in efforts around HIV in Port Elizabeth. In 2003 I got to come to the U.S. to visit models of HIV care in Boston, to see what we could take back home to replicate.
Later that year, I started coordinating conversations with a variety of stakeholders about what the state of affairs is for people living with HIV in South Africa. I started working as a consultant to South Africa Partners in 2003, and I helped plan South Africa Partners’ first Eastern Cape People Living with HIV and AIDS (PLHIV) Summit, which was attended by 250 people in 2004. After the conference, I was hired full time to be the local director for South Africa Partners.
What have been some of the highlights of the past decade?
We started very small, sub-granting from bigger organizations to help provide basic information for the general population about how to manage the disease — treatment literacy, opportunistic infections, positive living, prevention, stigma, acceptance, disclosure.
It was Tony Diesel, our South Africa Country Director, when he arrived to the organization in 2010, who essentially nationalized South Africa Partners, putting it really out there through the national working group. The end game for our I-ACT program — the Integrated Access to Care and Treatment, for AIDS/HIV care and support — was to be accepted as the national standard for care, and he moved that program from just the Eastern Cape to the whole of South Africa. To take something from just the Eastern Cape and help people understand it and implement it more broadly as the new national LinkCARE is, to me, a real highlight.
You said earlier that at the beginning of your diagnosis the state wouldn’t cover the cost of chronic medication. Has that changed?
It has changed completely. By 2004, with evidence that ART works coming from countries that had developed ART programs, the government announced that it was going to provide antiretroviral therapy for people who qualify, meaning those who have reached the AIDS stage with CD4 counts below 200. Today, South Africa says that it will test and treat everyone for HIV. And South Africa Partners, from its work with small healthy living support groups, to its work with I-ACT, to now LinkCare today, is right in there as part of the national strategy.