Dorcas Daniel Tyena (Lead writer)
About 80% of new HIV infections in Nigeria are sexually transmitted from unprotected consensual intercouse. While some are diagnosed with the virus at birth, others, like Rose Gyang, 45, contracted it through rape.
Nine years ago, Zadchlo International Foundation (ZIF), a nonprofit organisation working to improve the quality of life for young people living with HIV and AIDS in Plateau State of Nigeria, conducted a medical examination on Rose. She was diagnosed as HIV-positive after being raped. It was devastating news for her as a widow. To make matters worse, she was physically disabled.
On the day ZIF held an outreach in her community in Kuru, Rose had to crawl to the venue because she lacked a wheelchair. She had been shunned and treated as an outcast by family and friends.“After their sensitisation I realised my symptoms were similar to what we were told. I learnt about early symptoms like fatigue, headache, weight loss, and sore throat, which I experienced, are early symptoms associated with HIV.”
“They told us there isn’t a cure but you can enjoy a good life when you take your drugs and eat healthy. We were also taught to avoid sharing sharp objects with others and use protection during sex,” she recalled.
Advocates at ZIF became her family. She described the team as “intentional and consistent” because they kept in touch and provided a safe space for her. Rose and several others met monthly in groups, but each had an assigned sponsor who kept in touch daily. She could call at odd hours for “help, or just to talk,” she said. The sponsor made sure she sourced treatment and held her accountable.
Nine years later, Rose now leads Zawan, a network of 18 physically challenged women living in her community. She shares her story with women willing to listen, believing that her experience can inspire others to seek life-saving treatment and persevere. Her slogan, “Women deserve a voice,” reflects her awareness of those who died without treatment due to stigma and never had the opportunities she received.
“Society is really harsh”
In a recent briefing, Dr. Nicholas Baamlong, Plateau State Commissioner for Health, noted that the state’s HIV/AIDS prevalence rate is 1.6%, with 2,520 new infections recorded as of December 2024, and 46,126 people currently on Antiretroviral Therapy (ART). Despite progress, people living with HIV in the state still face widespread stigma and discrimination.
The stigma “did a lot to me,” Sarah, another woman who lives with HIV, said. “I couldn’t speak up and communicate the way I wanted to, so I would let other people ride over me because society made me believe that was who I was. It affected my grades, made me give up my passion for painting and drawing. I felt like a failure and blamed myself for everything bad in my life.”
As a baby, born premature, Sarah was frequently ill. Then her family got the shock of their lives when she was diagnosed with HIV at age four. This was revealed to her at age 11 when she was in her first year in secondary school. Now 24, she describes it as taking a toll on her life since. Growing up, she bore the brunt of another kind of stigma, self-stigma. At one point, she contemplated ending her life.
Self-stigmatisation happens when a person takes in the negative stereotypes about people with HIV and applies it to themselves. It can lead to feelings of shame, fear of disclosure, isolation, and despair. These feelings can keep people from getting tested and accessing HIV prevention or treatment.
“I isolated myself as much as I could. I would be in class, and I would know an answer [to a question] but I would not talk because I would feel like everybody will stigmatise or discriminate against me. I would be in the house, and I won’t be able to come out and associate with anybody.
“Society is really harsh. One time I was on a bus, and someone was talking and said over his dead body will he get married to someone who is HIV positive. He believes anyone who has HIV sleeps around and is very promiscuous. It broke me, I didn’t pick this life.”
According to a report by the National Institute of Health, up to 48% of nurses, physicians and laboratory scientists in Nigeria still lack knowledge about the disease, increasing their negative attitudes and often refusal to treat and care for persons living with HIV.
“The worst of it is when I get discriminated against by my own HIV community, stigmatised by our own health care workers,” Sarah noted. “They use such demeaning words at us. Unless you build a very good resilience, you cannot escape it because it will happen, one way or another,” Sarah added.
Supportive community
Currently, Sarah is actively engaged in HIV advocacy while fighting against HIV-related stigma and discrimination. “I am a baby of ZIF,” Sarah said, laughing. “They practically helped raise me, helped restore my confidence and now I am pursuing my dreams with a positive mindset. Their consistency in keeping in touch and ensuring I am doing well is divine because it helped me overcome depression and self-pity.”
According to Hanatu Maiga, ZIF’s co-founder and programme officer, the network started with her late mother who was passionate about reaching out to widows in the community. It did not have a name then and was just an informal gathering of vulnerable widows, “she felt the need to create a space where vulnerable people living with HIV could be catered for and have hope for a better tomorrow.”
ZIF also deploys health workers to routinely test people for HIV at outreaches. “On one of our outreaches to widows in 2014, we conducted medical examinations and were shocked to find most of them positive to HIV,” Hanatu said. “That move gave birth to ZIF. We thought to ourselves, ‘if the older people will be carriers of HIV, what happens to the younger generation?’ Everyone, especially those living with HIV, can benefit from a solid support network. A supportive community can help improve overall quality of life as well as make it easier to stick with one’s treatment regimen.”
From a team of three, the network now has 38 members with more out on different courses in care, sponsored by ZIF. These days, the line between its clients and staff is blurred, Hantu explained. This is because many who were supported by the organisation have evolved into support givers. “The 15 widows [we counselled] are now our staff and they are all HIV positive. There are also 12 youth under us as our staff who are also HIV positive,” Hanatu explained.
Presently, 68 HIV-positive patients have been linked to care in 2024 alone, according to Hanatu. She further explained that, a total of 2,341 are currently in treatment and no death has been recorded among them so far.
Dozens of sex workers have also received help. Some have learnt a new skill and secured a job, and others have managed to accept their diagnosis and restore family ties. With help from the network, many sex workers who use drugs have managed to quit active drug use, improve adherence to life-saving HIV treatment and prevention, and reconnect with the community.
Stigma creates more barriers
Stigma and support are key factors in how HIV/AIDs is handled, Esther Turaki, the Executive Director of Plateau State AIDS Control Agency (PLACA), explained.
“HIV-related stigma and discrimination is still a serious barrier in regards to HIV services across Nigeria and in Plateau. Although there is improvement compared to two or three years back, much needs to be done in the area of awareness and sensitisation,” she said.
She further added that people are apprehensive to access ZIF’s services because of the fear, “and if that is not addressed, we will continue to have people staying in denial even when they know that they are HIV positive.”
The 2022 UNAIDS Global AIDS report ‘In Danger’ revealed that global progress towards HIV prevention is slowing down, rather than accelerating. It also noted that “the most vulnerable and marginalised are being hit the hardest.” This has been further worsened by the defunding of the President’s Emergency Plan for AIDS Relief (PEPFAR), a U.S. government initiative aimed at combating the global HIV/AIDS with specilised clinics closing and treatment supplies dwindling.
“The defunding of PEPFAR has significantly impacted our organisation by limiting access to critical HIV prevention and treatment services. In response, we are working to secure alternative funding sources, strengthen local partnerships, and streamline service delivery to ensure continued support for those most affected.” Hanatu explained.