Fighting AIDS Stigma in Nigeria

Olayinka Jegede-Ekpe - Nigeria

Nov. 30, 2007—The message from the Nigerian media was clear: you had to be promiscuous to contract HIV/AIDS.

So when Olayinka Jegede-Ekpe’s dermatologist asked if she wanted to be tested for the virus, the 19-year-old student nurse thought the suggestion ludicrous. She agreed to the test nonetheless, figuring she could eliminate it as the cause of her skin rash and move on.

“After some weeks, I found out that no one was talking to me about my results. I thought that something was wrong,” she recalls. Her own doctor was traveling, and it took her several weeks of agitating before another dermatologist finally agreed to see her.

“She said, ‘If people believe in God, they live. Those who do not have hope, they die.’ That’s how she told me,” says Olayinka, who is known as “Yinka.” “I went blank. I didn’t hear what she was saying. I was in shock.”

Yinka went to back to her bed and waited to die. She waited three days, eating nothing. “After the third day, I didn’t die. I didn’t believe it. I looked in the mirror. I didn’t see a skeleton,” she says. “I started searching for the truth.”

Thus began a years-long quest, not only for truth, but for truthfulness and for critical changes in the way Nigeria deals with its HIV/AIDS epidemic.

Yinka is widely recognized as the first Nigerian to speak out publicly about her HIV-positive status. At 19, she told her story to a newspaper. It cost her her boyfriend – he said he would marry her only if she remained silent – but gained her international recognition for her work to combat the illness and the discrimination and stigmatization of its survivors.

In 2004, she was given the esteemed Reebok Human Rights Award for her groundbreaking work. She has been recognized by the Academy for Educational Development for her efforts to improve working conditions for people who are living with HIV/AIDS. She’s been featured in magazines for her pioneering work: she helped establish Nigeria’s first organization for people living with HIV/AIDS, the AIDS Alliance, of which she was general secretary; she was a member of Nigeria’s National Action Committee on HIV/AIDS; she has done training for youth throughout the country, and has been influential in creating national policies to deal with an infection rate that the Henry J. Kaiser Family Foundation puts at about 4 percent.

But her passion is centered around women. Now 29, Yinka lives in Lagos and is executive director of the Community of Women Living with HIV/AIDS in Nigeria. After attending a conference in South Africa, Yinka was motivated to help Nigerian women advocate on their own behalf. She realized that too many Nigerian women allowed men to make their decisions, a practice often harmful to women.

“I found out that women are always silent,” she says. “They don’t say anything and we have a lot of needs.”

Yinka’s goal is to empower women to take control of their own lives and their own treatment – even to help HIV-positive women have healthy babies, as she did in 2006. She encourages women who hope to become or are pregnant to learn whether they are HIV-positive so that they can take steps to protect their babies from infection.

During the 2007 Advancing Women’s Leadership and Advocacy for AIDS Action workshop, she says she is “already mapping out my action plans” to ensure that money going to fight HIV/AIDS in Nigeria targets women. She says she is particularly struck by one thing she learned at the workshop: it is not only the person who has an idea who must own it, but those expected to implement it as well. They have to buy into it, to claim ownership, in order to make it come to life, she says.

At the time Yinka was diagnosed, AIDS was something of a joke in Nigeria, she says, even among her fellow nursing students. They referred to it as “slims disease” because its victims lost so much weight. They didn’t understand how it spread. Even her best friend in nursing school refused to eat food that she cooked, Yinka says. Another student hid the key to the toilet so she wouldn’t be able to use it.

“Everybody had me isolated. Even the school management told me to leave. I wasn’t allowed to do exams. I told them I wouldn’t leave because I got there on merit. I told them if they messed with me, I would go to the press. They said, ‘OK, just leave her. After all, she only has a few years to live.’”

After she earned her nursing degree, Yinka moved to the capital, Lagos, where she met and married her husband, who also is living with HIV. In August 2006, she gave birth to Ini. In early 2007, mother and daughter were pictured on the cover of a national magazine, Genevieve, which was widely commended for breaking through stereotypes. Then, as if to illustrate the problem she was trying to resolve, the magazine’s editor wrote a first-person story revealing hear fear of contracting the HIV virus from Yinka at the photo shoot. She wrote that she didn’t want to be “one of those AIDS PEOPLE.”

The stereotype that Yinka had been fighting all those years was still very much alive. But this time, she was not the only one who was outraged. Readers rebelled. And the editor, in person and in print, apologized to the young woman who refused to remain silent.

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Yinka participated in Advancing Women’s Leadership and Advocacy for AIDS Action, an initiative to equip and empower a cadre of women from around the world with the knowledge and skills to strengthen and lead the global response to AIDS.

You can read more about the initiative here.

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