An Interview With Dorothy Onyango, Founder of Women Fighting AIDS in Kenya

Imagine being HIV positive in Kenya more than 10 years ago, when Africa was just beginning to deal with its epidemic. Kenyan Dorothy Onyango, who is HIV positive, began her AIDS organization back then. Her goal: to support women who had been rejected by their husbands because of their HIV status. Now her group provides treatment and support to several thousand women and children affected by HIV. Ms. Onyango discusses the shortage of HIV/AIDS medications in Kenya and the challenge of disclosing her HIV status to her children.

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Can you tell me a little bit about what you're doing in Kenya?

Dorothy Onyango

First of all, I'll start by saying my name is Dorothy Onyango. I'm a woman living with HIV/AIDS from Kenya. I started a group about 10 years ago, which is called WOFAK, Women Fighting AIDS in Kenya. The reason for starting this organization was to support women who had been rejected by their spouses because of their HIV status. Later on, it came out that these women also have children who are either infected, or affected [by HIV] because of their mothers' several stages.

So, we came together, about 12 women, to support one another. Then, in the year 1994, we registered as an NGO [non-governmental organization]. We started with bigger activities of supporting women, visiting women who are sick, and counseling women who are infected with the virus to just make them live on, with their life as normal.

When you first started, was it very difficult to find women who were willing to talk about their HIV status?

Yes. When we started, it was very difficult, because there was a very, very high stigma at that particular time because even the government itself had not come up open to say that HIV was in the country. There was the fear that tourists might not come to the country. Therefore, it was not even easy for an individual to come out and say that they are HIV positive.

How did you find the courage to do that?

It took me a very long time. It didn't just come out immediately. I think it took like five years before I could talk about my HIV status, and I think this came as a result of coming to conferences like this one.

I first attended an international [AIDS] conference in Amsterdam [in 1992] that was recognized by the International Community of Women Living With AIDS, and we had different women from different parts of the world. We had 54 women, and 24 were from Africa. Out of the 24 [women] from Africa, all of them are [now] dead except three [women], including myself. I think I owe this [my survival to] talking about my sisters openly, and even sharing and being able to share with other people from other countries.

Have you gotten access to treatments yet?

Yes, I've been positive for 17 years. I did not start taking medication until two years ago because I was living positively. I was taking care of opportunistic infections and making sure that I eat well and do all that is required. But two years ago, I had a TB [tuberculosis] attack and I had bouts of pneumonia. So after treating my TB, my CD4 counts had gone down, so I had to start on ARVs [antiretroviral drugs] and I'm doing very well with ARVs.

My country, Kenya, now is giving free medication of ARVs, but it is not able to cover all the people that require ARVs, because there are 240[,000] people who require antiretroviral drugs, but at the moment, only 70,000 are on medication, and this is as a result of civil society groups of people living with HIV/AIDS, combined with the government. So that means we are still way, way back, [and] that we are not able to take care of all people who require medication.

What I didn't understand you say is, how many people need medication?

Two hundred and forty thousand people need medication, but so far we have 70,000 who are on medication which is as a result of civil society organizations, international NGOs, and, part of it, the government.

So, what are you selling here at your booth? I noticed you were selling handicrafts. How did you come up with the idea to sell things at the International AIDS Conference? Where does the money go?

Whatever we are selling at the WOFAK stand is the wares that have been made by our members, who we give money for income generating, and they make their wares. Then, when we go out to meetings like this one, we sell for them. Thirty percent [of the proceeds] go to the organization, and 70 percent go to the members who have made the wares.

So, what are you selling? I saw you were selling serving spoons. What else are you selling?

We are selling baskets. We are selling red ribbons, which have been made by the women. We are selling necklaces. We are selling clothes ... anything that women are able to make, because we have women doing different kinds of skills that we have also supported them to do.

We pay school fees for all the orphans and caregivers to do various skills so that they are able to take care of themselves and their children. That is how some of them make the necklaces. The boys make spoons and the baskets.

Are you from a rural area in Kenya, or a city?

I'm the Executive Director. I sit in the city, but WOFAK has seven centers in the country, countrywide. So we have different offices in different provinces.

How many people do you help, or are involved in your organization?

Our membership now is 3,900 members. We have 120 members that we take care of, that we give ARVs and follow up, because we have a doctor and a nurse and a clinical officer who follows them clinically. Also, as WOFAK, we do counseling for the adherence of drugs. Then, also, we have a feeding program for orphans and vulnerable children because sometimes their mothers are very sick, or their parents are very sick, [and] they are not able to make food. So they go to school and they come to our center during lunchtime to have a nutritious meal, and then they go back to school. Sometimes this is the only meal that they have during the day, so we make sure that we give them a nutritious meal until they come back the following day.

Also, we try to support parents who cannot afford to make food for their children at home. We give them food baskets to enable them to make some food. Then we have also children who are on ARVs; we give them a nutritious meal, like three eggs in a week, and powdered milk and fruits and vegetables, so that their caregivers can make for them at home.

Tell me about your life, and your children. Do you have children?

Yes, I have wonderful children. I have adults. My daughter lives here in Canada. She is 29 years old and she's married. I've just got a new grandson who is 7 months old. I have two boys who are in the United States. They are in college. They are doing their fifth and fourth year, respectively and they are adults.

How do they feel about you speaking out?

OK. It took me a very long time to tell my children about my HIV status. Because I knew they were doing very well in school, and I thought this would interfere with them.

Unfortunately, or fortunately, they knew before I told them. When I asked my last son, who is doing his fourth year -- he's studying computer science in the state University of Minnesota -- I asked him. When I told him about my status, he said, "Mom, I knew a long time ago." I said, "How did you know?" He said, "I got your results in your room one day when I was in primary age." I asked him, "How did you feel?" He said that, "I was shocked, but I managed to absorb the shock and I'm over it now. So we pray for you all the time, Mommy."

Even there -- the boys, they used to bring articles for me at home. I didn't know that they had known until I told them, but my family, my brothers and sisters, they really take good care of me. They care very much about me. And, yes. I think that that keeps me going.

That's great. How come they all ended up in the States and you're still in Kenya?

Initially, when I didn't have enough information, I thought I was dying. So this was a way of getting rid of my children, not in a bad way, [but] for them to get education, [so] that even when Mommy dies, at least they'll be able to take care of themselves. So when they did their ordinary levels, they applied for colleges. I used to have a friend who lived in Minnesota. She managed resources for me from colleges. They applied because they had qualified, and they managed to go to college in these countries.

How many women are here at the conference from your group?

I think we have about 10 women from my group, [including] board members, volunteers, and staff of WOFAK.

How many of them are positive?

Most of our members and staff -- 90 percent -- are HIV positive themselves. For the board members, it's not compulsive that they have HIV.

OK. Well, thank you very much. I appreciate it. All the best to you.

For more on WOFAK, click here.