When Aminat Alli-Agboola, 33, first found out she was HIV-positive in 2004, she was too sick to react to the news.
“I was very ill,” she says. “There was nothing I could do but pray to survive.”
At the time, she attended Yaba College of Technology in Lagos, a city on the southwest coast of Nigeria.
Unsure how she contracted the virus, she says that it could have been through having unprotected sex with an infected partner or by sharing unsterilized, sharp objects, like hair clippers or razor blades.
Alli-Agboola began antiretroviral drug therapy in 2005. She also joined an anti-AIDS club at her college, formed by HOPE worldwide, an international charity. The club informed students about HIV and reproductive health, and Alli-Agboola says she made herself an expert.
She says that it wouldn’t have amounted to anything without her family’s support.
“Support from family revived me,” she says. “For me, I was at the stage of dying.”
But beyond her family, the stigma attached to HIV was strong. Alli-Agboola says she did not know that one day she would be married with two children. Her husband and children are not infected with HIV.
Alli-Agboola says her HIV status was the first thing she revealed to her future husband when he asked her out on a date. She says her husband is informed about the virus and supportive.
“He does not see it as a hindrance to our relationship,” she says.
Alli-Agboola also didn’t think she would be working in an organization and interacting with others without discrimination, she says. But she now works with the Nigeria Business Coalition Against AIDS, which implements workplace and community-based HIV and AIDS prevention education, care and support programs.
She also runs Positive Youth Initiative of Nigeria, a project she launched in 2005 that provides psychological and social support for young people living with HIV.
But to other HIV-positive youths in Nigeria, Alli-Agboola’s happy ending, with a supportive family, college education and good job, may seem far from reach.
Despite increased awareness about HIV and AIDS, stigmatization in families and communities remains strong. Youths living with HIV cite discrimination when it comes to education and employment. They are working through nongovernmental organizations with the government to pass the anti-discrimination bill currently under consideration in the National Assembly to protect the rights of people with HIV and AIDS.
More than 4 percent of Nigerians have HIV, ranking it third among the countries with the highest HIV and AIDS burden in the world after India and South Africa, according to the 2012 Global AIDS Response Country Progress Report. But new infections in the country decreased by 6.1 percent from 2008 to 2010 and by 2.7 percent in 2011.
But for people living with HIV, the stigma has been strong.
Gloria Asuquo, 24, has lived with HIV for 14 years.
“I tested positive in 1999, when I was about 12 years old,” she says. “I contracted HIV through blood transfusion. Each time people come out to say HIV is through sex, I come out to say, no, it is not only through sex. You can still get it in so many ways.”
Asuquo’s parents initially hid her status from her when she was first diagnosed at the hospital.
“They hid it from me,” she says. “They didn’t want me to know I was HIV-positive.”
Her father revealed her status to her a few months later.
“He started out by asking what I would do if my friend was HIV-positive,” she says.
Asuquo says she replied that she would not be friends with the person. A few days later, he asked her again, and she gave the same reply. Then, he told her that she was HIV-positive.
Asuquo says she did not understand the impact of the revelation. There was no accurate HIV awareness, just stigma.
“Back in 1999, anybody that looked sickly was called ‘AIDS-carrier,’” Asuquo says. “Anytime we are talking as kids, we always had negative perception about the issue.”
Asuquo felt her first stigmatization when the reverend at her church advised her parents to throw the 12-year-old out of the house so she didn’t infect her family. He told them to send her to a hospice in Abuja, Nigeria’s capital.
“He went as far as showing my family a place in Wuse, an area in Abuja where people are abandoned to die,” she says.
Although Asuquo’s father refused the reverend’s advice, her mother favored it, leading to frequent fights. They finally agreed to create a separate, quarantined room for her in their house.
Asuquo ran away to the National Agency for the Control of AIDS, Nigeria’s coordinating agency that oversees all efforts to combat HIV and AIDS.
“I ran to them and started crying,” she says. “They followed me back to my house and had discussion with my parents.”
When the situation didn’t improve, she ran away for three years, sleeping on the streets. But she returned home when a university lecturer told her about access to antiretroviral drugs.
“I was the first person in Nigeria they tested ARV drugs on,” Asuquo says.
Many young people in Nigeria are no longer oblivious about HIV, thanks to an increase in HIV awareness programs by nongovernmental organizations and media campaigns, Asuquo says.
HIV prevalence among young people ages 15 to 24 has shown a consistent decline from 6 percent in 2001, plateauing at 4.3 percent in 2005 and 4.2 percent in 2010, according to Nigeria’s 2012 Global AIDS Response Country Progress Report.
Many support groups have also sprouted throughout the years. Asuquo belongs to one for young people living with HIV called Association of Positive Youth in Nigeria. But she says the group doesn’t provide activities for education or support.
Alli-Agboola says funding is a challenge for some nongovernmental organizations and support groups working with HIV and AIDS.
“Why most organizations are redundant is because of the economic recess,” she says.
Although awareness has improved, stigma still exists.
Olajumoke, 25, declined to publish her family members’ last names because they have not told their extended family or friends that her 13-year-old cousin has HIV in order to shield him from stigma.
Her cousin, Enitan, was diagnosed with HIV six years ago. Doctors believe he contracted it through mother-to-child transmission. Enitan’s mother died from an AIDS-related illness in 2012.
“We thought it was a lie because nobody wanted to believe,” Olajumoke says.
He lives with his grandmother, Rashidat, who takes him for his treatment and medical checkups every two months. Enitan also attends lectures about HIV and AIDS infections. But no one has explained the full implication of what it means to be HIV-positive.
“We will eventually tell him, before he starts dating and all those stuff,” Olajumoke says. “But not now.”
Dr. Richard Ademola Adebayo, a psychiatrist consultant and clinical psychologist at the Federal Neuro Psychiatric Hospital in Yaba, says Enitan should know more.
“It is wrong,” Adebayo said during a phone interview. “The boy should be brought for counseling so that he can be aware of his condition. If he does not know, he can transmit it to others. He can indulge in other risky behavior. He should be aware. He is not too young to know.”
Beyond the family, people living with HIV also face discrimination in society when applying for education and employment.
Asuquo says that most of her peers living with HIV don’t have a job.
“The moment you come out on air to say you are positive and go look for job, they may deny you,” she says. “And coming to the area of school, they have denied so many people admission from school because of their status.”
Asuquo says she was denied admission to a private university after provisional acceptance because of her HIV status.
“I was denied admission into [a private] university,” she says. “I met all the requirement. But after doing a HIV test, they said they were sorry, they can’t give me admission because of my HIV status.”
Asuquo says the news upset her.
“You can imagine as a young person how devastated that is,” she says. “I don’t have right to work. I don’t have right to freedom. In that case, young people will not like coming out to say this is what they are.”
Most private institutions require newly admitted students to take an HIV test, she says.
Staff at one private institution, Bells University of Technology, which is not the school Asuquo applied to, said that it didn’t discriminate against students living with HIV. Dr. Emmanuel Daramola, a member of the university’s medical staff, says that students offered provisional admission undergo medical tests to ensure they are medically fit. But an HIV test is not one of them.
Asuquo plans to further her studies for biochemistry at a public university. She hopes to get a scholarship opportunity that will enable her pursue her dreams.
“The government should do something to protect the right of the youths,” Asuquo says.
Nigeria’s National Assembly is considering an HIV and AIDS anti-discrimination bill. One section would make it an offense for institutions to deny students admission based on their HIV status, says Kikelomo Taiwo, 25, who manages a campaign by a coalition of nongovernmental organizations working together to ensure the bill is passed into law.
Taiwo is a youth advocate with Education as a Vaccine Against AIDS, one of the lead nongovernmental organizations working with the National Agency for the Control of AIDS on the project. He says they joined the process in 2009 during a public hearing on the bill held by the House Committee on HIV/AIDS.
Nongovernmental organizations noted at the hearing that the bill focused only on stigma and discrimination in the workplace. They advocated for it to include more youth issues, like education.
“If we are going to have a bill on stigma and discrimination that will protect this key population, then it shouldn’t be focused on stigma and discrimination in the workplace alone,” Taiwo says.
Taiwo says the bill is just the first step.
“If we pass the bill into law, it doesn’t necessarily mean we are going to eradicate stigma and discrimination,” Taiwo says. “It only shows that our government is committed to the issues that affect the people.”
Taiwo suggests that after the bill is passed, follow-up action includes coming up with programs to target people in the community, educate them about the need to love and care for people living with HIV, and also tell them that there is a law that seeks to protect people living with HIV.
The bill is currently at the final stage, the third reading, in the House of Representatives. The Senate is also expected to pass the bill.
“The anti-stigma bill is yet to be passed,” says an official at the National Agency for the Control of AIDS, who declined to be identified for job security reasons. “People cannot come forward freely and conduct HIV test because they are afraid of being stigmatized. Those that have HIV cannot come forward and access their medication freely because they are afraid of who will see them. Stigma is a big issue.”
He says the government has geared a lot of programs toward combating HIV and AIDS in Nigeria. For example, the National HIV Vaccine Plan, launched in September 2012, aims to ensure Nigeria has quality and quantitative research to plan on how to combat HIV.
But most HIV programs target people in urban areas, ignoring rural areas, he says.
Alli-Agboola encourages people to take initiative by getting tested in order to know their HIV status.
“Some people say what I do not know won’t kill me, but it is better to know so that you can care and learn to live fine,” she says. “The people who care about you will support you.”
Asuquo advises young people not to allow anyone to look down on them or stop them from achieving their dreams.
“HIV does not kill,” she says. “What kills is the mindset of fear and self-stigma.”