Before she was diagnosed with HIV, Morolake Odetoyinbo, or Rolake, was living the life she’d always dreamed of. She had graduated from performing arts school, gotten married, and was running her own small bakery in northern Nigeria, where she lived with her husband on a military base. Then her husband tested positive for HIV, and five months later Rolake, 28, received the same diagnosis. Her doctor gave her between 5-12 years to live.
“At the time I was just a regular young person trying to make something of my life,” she says. “When I got my diagnosis I was depressed and terrified. All I wanted to do was to find a way out, which was impossible because of the stigma, because of the shame.”
Rolake’s diagnosis came a year after Nigerian musician Fela Kuti had died from AIDS, and so to her, AIDS meant death. She had seen horrifying pictures on TV of people dying from AIDS, and she thought the same thing would happen to her.
She lived in silence for three years, terrified that her friends and family would find out. Then, under the stress of it all, her marriage ended and she moved back to Lagos to be with her family.
Slowly she found the courage to reveal her status. She was surprised that some members of her family encouraged her to sign up for training as a counsellor for a new HIV/AIDS hotline. When the hotline launched, it was Rolake who took the very first call.
“That’s how I came to really understand HIV,” she says. “When I understood that it was a virus, and knew the way it worked, the terror of not knowing what was happening in my body ceased.”
It was the very beginning of a journey that would lead her to where she is today: a prominent voice in the international fight against HIV/AIDS. She became a bold and vocal advocate for the rights of the marginalised, women and girls in particular.
Free and accessible treatment for all
Rolake not only advocates for the removal of stigma, but for free access to treatment for all. She was pleased when initiatives brought free HIV treatment to an initial 5,000 adults in Nigeria in 2004. But patients still had to pay fees for the blood work required to qualify for these antiretroviral treatment (ARVs). “We had 5,000 people getting free drugs, but they couldn’t afford the lab work required to access ARVs,” she says.
Incensed, she founded her own organisation, Positive Action for Treatment Access (PATA), in the hope of ensuring that every person in Nigeria with an illness—no matter their situation—can gain access to the medical treatment they need. PATA has since won funding from the Ford Foundation, Unilever and the African Union. They’re now able to run summer camps for young people, including those born HIV positive, and Mary’s Home, a residential school for future female leaders living with HIV.
Rolake has also hosted her own TV show on the wide-reaching Nigerian networks, as well as served as a newspaper columnist, a member of the Strategic and Technical Advisory Committee for the World Health Organisation (WHO) on HIV, and as the Nigeria country lead for the Campaign to End Pediatric AIDS in Africa.
She now splits her time between upstate New York, where she is a mental health counsellor and professor of gender rights and sexual/reproductive health, and Lagos, where she serves as Executive Director of PATA and is practically a household name.
Passion and compassion
There is nothing that Rolake is more passionate about than the role of women and girls in the fight against HIV/AIDS. Today, 1.9 million Nigerians are living with HIV, and more than half of people living with HIV still do not have suppressed viral loads.
In Nigeria, women aged 15-49 years are more than twice as likely to be living with HIV than men. “It’s women who are family care providers… but walk into any big HIV meeting and who do you see around the table? You see men,” she says. “Women and girls are doing the dirty work every day, but their efforts in HIV/AIDS have not been documented.”
She is among several women featured in Nothing Without Us, an award-winning film that documents the brave, bold work of HIV-positive women around the world and their efforts to fight for treatment and a place at the table. “Women have always been at the forefront of the HIV movement, but unfortunately, until now, the story has not been told,” she says. “We’re telling it now.”
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