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Musa Njoko, featured on the cover of this issue, is an advocate for women living with HIV who lives in Durban, South Africa. Ms. Njoko spoke at the XVI International AIDS Conference in Toronto in August, and she sat down with me to share her thoughts on the epidemic.—Jeff Berry
Jeff Berry: Is this your first time to Toronto?
Musa Njoko: No, this is my second time here. The first time I came to do a training with UNAIDS.
JB: And you spoke on the panel with Melinda Gates?
MN: Yes, I spoke on Monday the 14th of August—which was also my birthday, turning 34—with Melinda Gates, the session panel [entitled] “Women on the Frontline of the AIDS Epidemic.”
JB: Could you talk a little bit about that, what the experience was like for you?
MN: Yes, at first with the invitation, I didn’t know if I was going to come to the conference. But when the invitation came through, I saw the names of the people I was going to be on the panel with, and I thought wow, this is big, and it’s a platform to speak with the influential people, the people who hold the key—the people who speak, and things happen. So I just thought it was a great opportunity for a young woman from South Africa living with HIV to emphasize the importance of putting interventions [in place], especially for women.
I think over the last 26 years, especially in Africa, women have always been the most vulnerable, always been the most affected.But when you look at interventions, all these interventions are mostly just empowering the men. A woman is still dependant on a choice, and also on the information, that the man has. So you know if the man decides in the family unit that we can’t talk HIV, we can’t talk condoms, this woman is still at the mercy of the man. So for me this conference really has been about making sure that the voice of women, infected or affected, HIV-positive or HIV-negative—to make sure that their voices are heard.
JB: What do you hope to take back from this conference to South Africa that you’ve learned, or to people living with HIV in South Africa? I know you have difficulty accessing drugs there.
MN: What I’m hoping to take with me is really making connections with people from around the world, learning from those people, and also just sharing our experiences as South Africans, but also to find ways, or those linkages I will make, trying to find meaningful ways that can strengthen already existing programs in South Africa.
Also, [the fact that] there is some kind of access to treatment, but we are not there yet, because of traditional and cultural barriers, and also religious, so all of those things they come into play. So in other countries they have been emphasized longer than what we have in South Africa. So I am really hoping to get linkages—the more voices we have speaking on the same issues, I think it puts more pressure on governments as well as on decision makers.
JB: What do you do back in South Africa?
MN: I am a musician. I’m also a businesswoman. I do motivational speaking, but I am mostly in the entertainment [field]. So I use my talents to communicate messages of hope, and I run an organization called the Musa Njoko Wellness Foundation. We focus on women infected with HIV, just trying to support and uplift, to help women, especially young women, to continue to live their dream.
The main thing for me has always been, though I have HIV, I still want to live my dream. I wanted to be an accountant—I want to deal with the issue of HIV in my life, but I also want to continue my studies. I am a musician, I still want to sing, and be able to deal with and manage HIV in my life. So it’s about being well, socially and psychologically, and knowing what to do in different situations when we’re talking about HIV and AIDS.
JB: Can I ask, are you married or single, do you have family back in South Africa?
MN: I have a family. I’m not married. I’m single. I have a son, he’s turning 14. I had him before I was infected with HIV, so now, yes, I’ve lived with my family for about six years. I’ve been staying in Jo’berg, but now I’ve moved back home, to Kwa-mashu. It’s where Gugu Dlamini lived—I don’t know if you’re familiar with that story?
JB: Yes. [Gugu Dlamini was an HIV-positive AIDS activist who, on World AIDS Day in 1998, went public and spoke out about her HIV infection on Zulu-language radio and television. She was stoned to death the next day by a village mob.] Do you have access to treatment and medicine there?
MN: Yes, there is some access, but it’s also [about] transparency and honesty of pharmaceutical companies, and those who are doing clinical trials. I am fortunate, in a sense, that I got to learn and be educated about HIV at the early stage of my discovery of my HIV status. But what happens with other people, especially women, once they are found to be HIV-positive? People just view them as in-takes, they don’t explain to them that should you [participate in a] trial, you will not be able to take drug X, Y, and Z. So you find that while there are drugs available, because of your previous exposure you are now not able to use those drugs [due to resistance]. So I was fortunate that I was educated much earlier so I did not expose myself to many, many different drugs. But at the moment I am trying to shop around for something new, because the combination I was on I’ve become resistant to.
JB: So do they have informed consent for the people in the trials there? Do they explain it well to the people entering trials?
MN: Obviously not. They do have consent, but in terms of explaining and honesty, to really say to the person, if you are signing this, then this is what you are signing up for—people always get surprised when they are told at a later stage, okay you cannot take X, Y, or Z. I think it’s transparency, I think it’s the issue of honesty, and explaining and educating people before they commit to participating in a study.
JB: What would you like to tell our readers in the U.S. Why they should care about South Africa? Because a lot of times, people don’t have that global perspective, and I know it helps to come to a conference like this, for me, coming from the U.S., where people may live a more secluded life, and are very focused on their own domestic issues—why should they care about what is going on in Africa? How does it affect them?
MN: I think that because we are all in this together. And if you look at other African countries, South Africa you would rate as one of the most successful countries in Africa. So we are playing a lead role for other countries on the African continent. For the success of South Africa, my belief is that it will benefit the entire African continent. And also, any mess that happens in South Africa will definitely affect the entire continent.
So it will definitely affect the whole world. And I think it is critical that other countries from outside Africa put more emphasis and save the people because over there, if you take the South African history, we are still recovering from that [apartheid]. We are still learning to live life as people who now have freedom. And issues of illiteracy, issues of education, economic development, and unemployment, they come into play. So yes, we need all the support that we can get.
JB: Is stigma and discrimination a real issue for people living with HIV?
MN: Absolutely. Stigma and discrimination are still very much prevalent. In other countries maybe you are dealing with one issue. You are dealing with making sure that there is treatment, and that you prevent transmission, and those are tougher issues, not only in South Africa, but the African continent. You’ve got cultural issues which are very, very strong.
So for instance, having a child out of wedlock, that on its own is a huge issue. You can live with the shame for the rest of your life, more so when you are now HIV-infected. So already you have another issue, punishment and community rejection, even by your family. And then you’ve got religious aspects of it.
You’ve got traditional healers. When you talk about antiretrovirals, they will tell you, “but this is what we will always use, forever.” So it’s just so many issues. Even when there is something in traditional medicine that can help you as a person living with HIV, even if it does not treat HIV but can boost your immune system, in one way or the other, the religious people will have an issue with you. They will say, “Oh, now you are using traditional medicine and you don’t have faith.”
So it’s a lot of issues. You find that people are torn apart. They are not really sure which way to go. That is why, in my session, I said the Church is the biggest hypocrite. Because I don’t see the Church playing an active role for its own members, saving its own members, educating its own members, and improving the quality of life of the people they lead.
JB: What about your own leader of South Africa? I know he’s had some going back and forth about the cause of HIV/AIDS.
MN: That’s exactly what I’m talking about; there are many other issues, and also where we come from as a country, there are still so many issues that have not been resolved. In trying to find the solutions, I truly don’t believe that our president will go out of his way to try and destroy people’s lives. I think that while we are trying to find answers and solutions, we are making big, big blunders. But it just becomes a problem when we don’t learn that, okay, that was a blunder, let’s move on. Let’s find another way of trying to address the solution.
JB: So you have hope?
MN: I do [smile]. I do have hope. Definitely, I do have hope. I believe, especially South Africa, my nation, we are a fighting nation. We are a strong nation. We are a conquering and overcoming nation. I know that even with HIV, we may be struggling at the moment, but I am definitely confident that we will conquer.
JB: Thank you so much.
MN: It’s my pleasure. |
