Human Immunodeficiency Virus (HIV) infection and AIDS is one of the major public health crises prevalent among women in Nigeria. The ICIR’s NIYI OYEDEJI reports on the stigmatisation and discrimination some women living with this disease face.
WHEN Lucy Attah-Enyia tested positive for HIV 25 years ago, she thought she had received a death sentence and would soon die of the incurable disease.
The mother of three told The ICIR that her life flashed before her eyes when the doctor disclosed her HIV status to her. Still hale and hearty, Attah-Enyia said she never thought she could still be alive when she spoke with this reporter.
“I was so sad when the doctor who attended to me informed me that I had five years to live. He actually used the word ‘may’, so the five years was even under probability.”
Like Attah-Enyia, Gloria Asuquo is another woman who has been living with HIV/AIDS for over twenty years. The 32-year-old woman said life has not been rosy for her since she tested positive for HIV at the tender age of 10.
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Asuquo said it took her family, particularly her dad, a long time before he summoned the courage of disclosing her status to her.
“When my father asked what I would do if a friend of mine gets diagnosed with HIV, I replied that I wasn’t going to eat with such person and all sorts because I thought people living with HIV had to look skinny.”
Asuquo was later visited at the hospital by high-ranking government officials, and pictures of her were taken even while she and her mum were unaware of what was going on.
“While I was still admitted at the hospital with no sign of sickness, I had to start rejecting the drugs they were giving me before my dad had to disclose to me that I had tested positive for HIV.”
She told The ICIR that she wept uncontrollably for days when she discovered she had contracted the HIV disease.
On her part, Ajoke Adebayo, not real name, was diagnosed with HIV disease in the year 2000, just after having her first child.
The 46-year-old woman said she thought it was all a joke and didn’t take the doctor seriously until her child was diagnosed with the same disease.
“When I first got to know of my status in 2000, I didn’t believe it and felt they were just giving a wrong diagnosis until I lost my husband and my child also tested positive,” Adebayo told The ICIR.
How we contracted HIV
Adebayo said she had no idea of how she contracted the disease but added that it is not impossible she might have gotten it from her late husband.
She told The ICIR that her husband encouraged her not to take the result serious when it first came.
“I think I contracted the disease from my late husband because he was critically ill before his death.”
Adebayo added that it dawned on her when her first child also tested positive for HIV, and that was when she went for another test to ascertain her status.
Unlike Adebayo, Asuquo contracted HIV through blood transfusion at a hospital in Abuja, which she blamed on a doctor’s negligence.
“Although my father took it up with the doctor and dragged him to court but the deed had already been done.”
She told The ICIR that she was just in Primary six going to JSS1 when she was HIV positive.
Attah-Enyia, on her own, said she had no idea of how she got the disease, saying it remains a mystery to her to date.
“I discovered my HIV status when I went for antenatal care; it was there I was tested positive.”
She later delivered the baby who turned out to be HIV negative, just as her two other children are also HIV negative.
The burden of HIV in Nigeria
According to the Joint United Nations Programme on HIV/AIDS (UNAIDS) 1.7 million Nigerians are living with HIV/AIDS.
Of the total population, 1.6 million are adults of age 15 and above, while the rest are young children aged 0 to 14.
960,000 women equating to 56 per cent, live with HIV/AIDS in Nigeria, while 650,000 men aged 15 and above live with the disease.
A 2019 survey by the Nigerian government indicated that the national HIV prevalence in Nigeria is 1.4 per cent, predominantly among adults aged 15–49 years.
The survey further indicated that women aged 15–49 years are more than twice as likely to be living with HIV as men 1.9 per cent versus 0.9 per cent.
According to UNAIDS, as of 2016, Nigeria had the highest number of newly infected HIV-positive children out of 23 countries.
While none of Attah-Enyia’s three children is positive for the incurable disease, Adebayo’s first child is HIV positive, a development she blamed on her negligence to accept her status on time.
“I lost my husband in January 2004 and had my second child on February 28 but lost that child in November of the same year, which was the same year my first child also tested positive,” says Adebayo.
However, Asuquo recently got delivered a set of twins, who are HIV negative, just like her husband.
“I got married on April 1, 2017. I had informed my husband of my status before we got married. He stood by me. Yes, my husband is healthy, I have a set of twins, and they are healthy as well.”
The stigma we face as HIV patients
Attah-Enyia said apart from the fact that she battled fear and psychological trauma when she first tested positive for HIV, she also admitted to having suffered stigmatisation.
She stated that the most painful part was that the doctors who should know better were even part of those stigmatising her when she had her first baby.
“When I had my first baby, the stigma and discrimination was so high to the extent that I was left alone for good 5 hours after delivery. I almost passed on if not for the grace of God that I’m alive today to tell the story,” Attah-Enyia narrated.
Asuquo on her own said she faced a lot of discrimination when she tested positive, which affected her a lot during her teenage years.
She said she stopped going to school and church because of discrimination she faced, as people avoided her like someone afflicted with plague.
She added that they jeered at her and referred to her as a living corpse whenever she walked by people in church and school.
“My mother separated me from the rest of the family. She demarcated my part of the house separate from the others. The stigma was that much.
“One day I could not bear it again. The pressure was too much for me to bear. I had to break the window and jump out to escape from home, I was just of the age of 12 then.” Asuquo explained.
Asuquo ran away from Abuja and secretly relocated to Nsukka without the knowledge of her family because of discrimination.
“I was tired of life and just wanted to die when I ran away from home. I even stopped taking my drugs.”
She was later found by a good Samaritan, who reunited her family a few years after she absconded from home.
From stigma to success
In 2015, former president Goodluck Jonathan signed the HIV/AIDS Anti-Discrimination Act into law.
The law, which protects the rights and dignity of people living with HIV in Nigeria, makes it illegal to discriminate against people based on their HIV status.
It also prohibits any employer, individual or organisation from requiring a person to take an HIV test as a precondition for employment or access to services.
Apart from the stigma associated with being positive for HIV, the women also narrated how the incurable disease brought them fame and honour.
Although Asuquo was denied admission at a public university in Nigeria before the passage of the law, she currently attends another public university in the country, a development she said could not have happened without the anti-discrimination law.
Although she had been faced with discrimination based on her HIV status, she added that being positive for the disease has also brought her fame and honour.
Apart from being a key member of the Association of Positive Youths living with HIV/AIDS in Nigeria, Asuquo also works with an agency that advocates for the right of people living with HIV in Nigeria.
“HIV has become a blessing to me. I now sit with people that matter in the country as a result of my status.
If not for HIV, I would not meet Ministers, Ambassadors and so many important people in the society. If not for HIV, I would not have ever flied in an aircraft. I’m proud to be HIV positive,” she said.
Like Asuquo, Attah-Enyia has also grown beyond the stigma to advocate for better health systems, care and support for people living with HIV/AIDS in Nigeria.
A cause she champions through her not-for-profit organisation called the Society for Women and Children Living with HIV and AIDS in Nigeria (SOWCHAN).
“At SOWCHAN, we advocate for the rights of people living with HIV/AIDS, just like every other human being in the society.
“We want to see a country where vulnerable groups, women, girls, children, female sex workers, injection drug users, sexual minorities, orphans and vulnerable children living with HIV/AIDS are given equal rights and privileges like every other person in the society.”
'Niyi worked with The ICIR as an Investigative Reporter and Fact-checker from 2020 till September 2022. You can shoot him an email via [email protected]. You can as well follow him on Twitter via @niyi_oyedeji.