To eradicate HIV/AIDS by 2030, experts say Nigeria needs to first overcome issues of stigma and discrimination, which are barriers to testing and treatment, reports Vincent Ikuomola.
It is one professional indiscretion, but the quantum of firestorm it has ignited speaks volumes about HIV stigmatisation index in the country. Last month, a qualified nurse simply identified as Deborah Chinasa Anaba (aka Ejimbe Lilian) allegedly published pictures of some HIV patients who came to receive their anti-retroviral drugs at the hospital where she purportedly works, sparking fury in Nigeria’s HIV community.
According to the Civil Society for HIV/AIDS in Nigeria (CiSHAN), which protested the social media publication, the action was targeted at perpetuating stigma and discrimination against people living with HIV/AIDS in the country.
”Most worrisome is that the nurse is a licensed and trained healthcare professional who is under oath of confidentiality to protect both the identity of her patients and the sanctity of her profession. This singular act will not only encourage other people to stigmatise and discriminate against people living with HIV/AIDS in Nigeria, it will also increase the already high stigma index in the country,” CiSHAN stated.
That was not an isolated case. Also narrating her experience in the hands of a caregiver, Gloria Blessing Ogodo, board member, International Committee of Women (ICW) living with HIV/AIDS in West Africa, said she was stigmatised when she went to a health facility to buy contraceptives. Instead of addressing her need, the caregiver urged her to go to a church and ask for forgiveness so that a pastor can conduct deliverance on her.
”I went with a male colleague to a primary health centre, requesting for contraceptive as a person living with HIV who would not want to infect her partner. The woman attending to me shouted saying: ‘You have one problem and you want to add another problem again as young as you are. You know instead of you to ask for God’s forgiveness you are coming to add more problems.’
“Before I knew what was happening, she had created a scene around us, calling her colleagues at the facility. While I was wondering where the confidentiality is, she gave me numbers of pastors to call for deliverance,” she said.
She added that it would be difficult for a young person to walk into such a facility to ask for contraceptive to help prevent unwanted pregnancy or spread of virus because of fears that he or she may be stigmatised.
However, in Nasarawa State, it is a different ball game. Many PLWAs have mastered the art of coping with stigmatisation. Though it was not easy at first, they said with time they have come to terms with the reality and accepted their condition and have decided to come out openly.
According to Philip Lokoko, Nasarawa State coordinator of NEPWAN, his colleagues have devised means of getting along with their condition without allowing themselves to be bogged down by discrimination issues. What seems to have worked is self-acceptance of one’s status and the determination to live a positive life, Lokoko said, adding that he and his colleagues have also embraced support groups where they mix and catch fun like other persons.
“In the initial stage, it wasn’t easy. But now with the knowledge I have received from interactions with partners and other groups involved in HIV/AIDS, I think life has become far better and I have been able to overcome stigmatisation.
“Because the key issue in HIV/AIDS is to accept, self-acceptance of status without putting blames on others. You have accepted that it is an act of God, then you will be able to live your normal life and people will no longer be pointing fingers at you. By the time you have overcome yourself, then I think you can live a normal life and enjoy yourself and that is some basic things I have been doing,” Lokoko advised.
Lokoko, who has been living with the virus for the past 15 years, noted that at the time he knew his status, it was like a death sentence. But today, it is a motivation for him. “Today, I am a role model to people living with the virus in the state and community.” Attending support group meetings has also been the game changer in the state as most of the people living with the virus in the state belong to one support group or the other.
“Joining support group helped me to overcome stigmatisation as we were equipped with knowledge that living with the virus is not a death sentence. We were told that stigma even kill faster than the virus. Except you are able to overcome stigma, you are liable to die fast. But I was able to embrace the reality and now I have become a role model.
“I no longer panic when people talk about the virus now. Where there is proper pre-test counseling and orientation, it is easier to overcome stigma. I was also told the benefit of knowing one’s status early. The very day I got to know my status was the same day I was interviewed by the media,” he said.
On the impact of the support group and how it all started in Nasarawa, he disclosed that the good job began in the state with only 11 support groups, “but today we have 42 support groups with 2,775 members after going around the state to create awareness so that people will move out of their self-stigmatisation and not just die out of ignorance.”
He, however, admitted that HIV-related stigmatisation has not been fully stamped out in the state, saying it is very minimal now compared to what used to happen. Also, Ruth Yakubu, 42, mother of four, noted that stigmatisation does not affect her because she has refused to be stigmatised.
“For me as a person, stigma is no longer an issue to me because I refused to be stigmatised by people. You know, at times, people get stigmatised when they allow themselves to be stigmatised. But for me, I have overcome stigmatisation long time ago.
“I overcame it by opening up to people about my status. When I discovered that I was HIV positive, I wanted to know what the virus is all about and I studied it and discovered that I can manage it and live with it. So, I was able to live positively and when people are trying to stigmatise me, I just say to them, go and get tested. And many of them end up being positive and my interaction with them helps them to know their status and those positive are living with it,” she said.
On how she got to know of her status, Mrs. Yakubu said she knew about her status through the illness of her husband, now late. When he was ill, in the course of treatment, he was advised to undergo HIV test, which turned out to be positive. That was how she was advised to go for test, which also was positive. “I accepted it and moved on with my life. Though the first day, it was as if there was an HIV tag on me. It was not easy, but with proper counseling, I was able to overcome.”
According to studies, HIV-related stigma spreads the virus faster, as it has shown that when infected people take their antiretroviral treatment correctly, their viral loads can be suppressed to a level that makes it almost impossible for to transmit the virus to others. Doctors and other experts in the field of HIV/AIDS management said stigma, discrimination, blame, and denial are probably the most difficult aspects to address in order to curtail the spread of the virus; yet addressing them is central to preventing HIV transmission and mitigating the impacts of the disease on individuals, families, and communities. Besides, studies have also shown that, among members of the public, there is limited understanding of the underlying drivers of stigma or the specific ways in which stigma affects HIV outcomes.
If there are lingering issues about how stigma and discrimination can be reliably measured in different settings, there is no doubt that discrimination occurs at multiple levels, including the interpersonal, institutional (health facilities, schools, and workplaces), community, and legislative levels. Manifestations of stigma take many forms, including isolation, ridicule, physical and verbal abuse, and denial of services and employment. Experts explain further that experiences of HIV-related stigma differ by sex, which is probably a reflection of broader gender inequalities in the world. For example, in many African cultures, women are more likely to be blamed for bringing HIV into the household than men. There are times discriminations reinforce existing stigmas against marginalised groups (called compound stigma).
The problems have persisted probably because common stigma-reduction interventions have focused mainly on creating changes in individual knowledge, attitudes and behaviours rather than broader social and environmental change that can turn the tide. Also, there have been very few rigorous evaluations of stigma-reduction interventions in the developing world.
However, in Nigeria, there has not been a lack of legislation to handle issues arising from HIV-related discrimination. The HIV/AIDS (Anti-Discrimination) Act, therefore, tends to halt stigmatisation by making provision for the prevention of HIV/AIDS-based discrimination and to protect the fundamental human rights and dignity of people living with and affected by the virus. The Act, which was enacted in November 2014 to deter the general public from discriminating against people living with the virus, frowns against ill-treatment of PLHIV in health facilities, religious places, schools, job denial, and denial of access to communal places, amongst others. In summary, the Act prohibits the discrimination of persons living with HIV by any individual or community or institution in an act that would place a barrier to the constitutionally guaranteed rights of these individuals due to their HIV status.
Parts 1 (5) and II (6) of the Act state: “It is an offence to discriminate against any person on the basis of their real or perceived HIV status by – (a) denying or removing from such person any treatment, medication or any supporting and enabling facility for their functioning in the society; (b) refusal to offer treatment by a qualified medical personnel except in such cases when special care or facilities specifically required for treatment of HIV/AIDS does not exist in that health facility.
“No individual, community, institution and employer or employee shall discriminate, directly or indirectly, against any person in the society based on the person’s HIV status or perception of same in employment, delivery of services and other benefits.”
Five years after its passage, has the law eradicated HIV stigmatisation in the country? The new president of People Living with HIV/AIDS in Nigeria, Abubakar Ibrahim, thinks otherwise, saying stigma is still a major problem to accessing treatment in the country. He explained that when people go to health facilities, they become the talk of everyone at the clinic who sees them accessing treatment because of the open spaces allocated for treatment. This, he said, prevents many infected people from accessing treatment because of shame and stigmatisation.
Buttressing Ibrahim’s claim, Walter Ugwocha, executive secretary, CISHAN, said the fear of stigma was still a factor in accessing treatment.
‘’Stigmatisation is still very much around with us, he said. He added: “If stigma prevents HIV-infected people from getting on to treatment, the virus will be allowed to flourish. People who don’t know they are infected with HIV would not know that they require treatment.”
On the way forward, Ugwocha said: “From the health worker to the society to the religious entity, stigma is still a very big issue. Stigma is the attitude; discrimination is the action. It is a very big issue for people living with HIV in Nigeria. In Abuja recently, some people were refused treatment because of their HIV status.
“We lost someone about four weeks ago in Wuse General Hospital because of the person’s status; it was becoming difficult for the person to be given the appropriate treatment. The case became complicated, and she died. We also had issues of a couple preparing for their wedding in two weeks only for the woman to discover she is HIV positive. And the man refused to go ahead with the wedding, thereby pushing the woman into depression,” he said.
What this means is that stigma poses a huge threat to the 90-90-90 target, which states that 90 percent of the population should have done HIV/AIDS test, 90 percent of those tested positive should be placed on treatment while 90 percent of those on treatment should have their viral suppression reduced drastically by year 2030.