“We Need More Stories Celebrating Our Strengths and Successes”
Morolake Odetoyinbo is the founder of Positive Action for Treatment Access (PATA) and Mary’s Home for Adolescent Girls in Nigeria. She is a licensed mental health counselor, activist, advocate, coach, public speaker, radio and TV producer. She has worked extensively with issues related to HIV/AIDS, LGBTQ, sexual and reproductive health and women’s rights.
Morolake Odetoyinbo’s life was changed forever in 1998, when she tested positive for HIV. At only 28, Morolake, known affectionately as Rolake, had everything most women dream of – a marriage, education and her own small business. Suddenly, her world was turned upside down by the diagnosis: “I felt my like life had come to an end. I believed I had failed at everything. My marriage was in trouble, I couldn’t have a child and I was far away in Kaduna, away from Lagos where everyone and everything was familiar. I oscillated between being mad at life and feeling sorry for myself. Mostly I was just sad and afraid that my life was over before it had started.”
Rolake tested HIV-positive just a year after the great Fela Anikulapo Kuti, a Nigerian musician and human rights activist, died of an AIDS-related illness. At the time, Nigeria had no treatment for HIV and there was a lot of fear, stigma, shame and silence surrounding the disease. A doctor had given Rolake 5-12 years to live; she spent the first three silently contemplating death. Those were the most difficult moments of her life. Eventually, she left her marriage in 2002 and returned to her parents’ home, which happened to be a new start: “I was no longer afraid of what people would say and what my church preached. I’d come to learn that the most important person in my world is me – Morolake Odetoyinbo. I also learnt that my life is not a democracy. I run a monarchy, and people do not get to vote about how my life is lived and the choices I make.”
A family friend encouraged Rolake to apply for an HIV/AIDS telephone hotline training and she became a volunteer counsellor for the first HIV/AIDS hotline in Nigeria. She was the one who took the first call on the day the hotline officially launched. It was the beginning of her journey as a prominent voice in the international crusade against HIV/AIDS. She began her fight for the rights of the marginalized struggling to get free access to treatment for all: “Being openly positive meant that HIV became less of a myth and helped to reduce the stigma, shame and silence around it. We made people come out of hiding and denial, we normalized HIV and encouraged people to seek treatment. When I tested HIV-positive at the age of 28, I was afraid I would never turn 40. In 1998, we had no treatment, and people with HIV died slow, painful, humiliating deaths. We needed people to challenge the governments and policy makers. We needed doctors and politicians to make the change happen, we need humanitarian groups to continue funding advocacy. Treatment and testing are great, and they save lives, but advocacy changes laws and attitudes.”
In 2002, before PEPFAR, the U.S. President’s Emergency Plan for AIDS Relief, and the Global Fund, Nigeria became one of the first countries in Africa to give treatment to people living with HIV. The program provided antiretroviral drugs to five thousand adults in 25 centers across 18 states. There was, however, a monthly user fee of 1,000 Nigerian naira. And this was at a time when the minimum wage in the country was 7,500 naira. The only way to qualify for the government subsidized drugs was to pay 25,000 naira for baseline tests. The cost and location of treatment centers in major cities meant that the poor could not afford to join the program. Though Rolake was still healthy and did not need HIV medications yet, she dedicated herself to fighting for access to free and equitable treatment across Nigeria. Morolake founded her own organization in Nigeria – Positive Action for Treatment Access (PATA), which became the leading voice for treatment access and HIV treatment literacy for people living with HIV. PATA would grow to become a strong HIV and AIDS, Sexual and Reproductive Health and Rights organization, helping people living with HIV, especially women and girls, to be fully aware of their rights to have appropriate services and possible treatment. She had her own TV show on the network service of the National Television Authority reaching over 15 million Nigerian households, and a weekly newspaper column in the most widely read newspaper in Nigeria.
“I decided to start PATA, an independent advocacy NGO. I had a voice because I was writing and publishing a weekly column, In Moments Like This, in the Sunday Punch newspaper and This Day on Sunday. PATA was my vehicle to mobilize communities and generate demand for HIV treatment through treatment literacy and advocacy.” Morolake also started a mentorship and training program for women living with HIV in Nigeria, which earned her the African Woman of Substance Award in 2005. The award came with a grant that allowed Rolake and her organization to provide microcredits and financial support to women living with HIV and directly affected by AIDS.
Morolake has served in various capacities nationally and internationally, including working for the Global Fund for AIDS, World Health Organization HIV department, and many more. She has received multiple awards for her work and was honored during the 100th anniversary of the International Women’s Day as one of the top 100 people supporting women and girls globally. But the project she remains most proud of is Mary’s Home, a residential school for future female leaders living with HIV.
“When I tested HIV-positive 22 years ago, I had loved and been loved. I was a university graduate and a married woman. I’d lived my youth, had incredible experiences living in boarding school from age 10 to 16, made friends from various parts of the country and spent an amazing year serving in the National Youth Service Corps program for young Nigerian graduates. Then in the cause of my work as an activist, I met adolescents and teenagers born with HIV. Children who had lost one or both parents to an AIDS-related death, these are the children who touched my life the most.”
“Today, there are some beautiful orphaned teenage girls living in my childhood home, sleeping in my childhood room, going to school, being fed and cared for. We struggle to find funding for the home, but we’re still open, and our girls are all in school and healthy.
In 2014, the Lagos State government gave PATA permission to register and open a home for adolescent girls. Mary’s Home is named in remembrance of the first person who tested positive for HIV in Nigeria in 1995 – a 13-year-old girl. Rolake turned her childhood house into a home for vulnerable adolescent girls because prospective adoptive parents do not take in teenagers and most orphanages reject them, too. “Today, there are some beautiful orphaned teenage girls living in my childhood home, sleeping in my childhood room, going to school, being fed and cared for. We struggle to find funding for the home, but we’re still open, and our girls are all in school and healthy. There are other young people who aren’t orphaned but in need. Many young people not in Mary’s Home are being supported by PATA. My joy is being in a position to help them to get a university education and become independent adults.”
Now Morolake lives with her son and spouse in Canton, New York. She met her partner in 2014, while studying mental health at a graduate school in the US, and they got married two years later. As an advocate, teacher and public speaker, Rolake is active both in the US and Nigeria. She works as a mental health therapist and teaches an undergraduate class in Global Advocacy for Women’s Sexual and Reproductive Health and Rights at her alma mater, St. Lawrence University. She is passionate about teaching and mentoring young women to become leaders and advocates. She is also still involved in PATA’s everyday work, taking frequent trips to Nigeria.
“When you educate or help one woman to become independent, you’re educating a village and bringing financial freedom to a generation. Women still do not have rights over their own bodies. Telling stories of strong women is inspiring and comforting. The strong and amazing women I know have shaped my life and my beliefs in incredible ways. We need stories told by women, stories told of women, stories told to women. We need many stories in many languages and many cultures. We need more stories celebrating our strengths, successes and growths.”
