An analysis of the policies, pronouncements and programmes on

HIV-related stigma and discrimination in Nigeria

M. O Ukpong

For

Journalists Against AIDS (JAAIDS) Nigeria

November 2003

Acknowledgement

The author is immensely grateful to all who have contributes in no small measure to the success of this project. This includes all those who were interviewed, all those who provided resource materials and all those who helped me make valuable contacts for this project. Most importantly, I would like to thank all persons living with HIV and AIDS who agreed to be interviewed and have their voices erred in this project. I would also like to thank Yanana Mshelia who provided with me with so many reference materials with which I was able to grasps the basic understanding of stigma in all its contexts and forms. I acknowledge the wonderful suggestions of Matt Greenall which improved the quality of this project as well as the opportunity, time and efforts of Mr Omololu Falobi in editing and giving directions for the writings. Finally, I thank Mr OA Orifowomo who made me understand all the legal jagon and the writings of the Nigerian judiciary.

An analysis of the policies, pronouncements and programmes on HIV-related stigma and discrimination in Nigeria

Introduction

More than two decades into the HIV/AIDS epidemic, stigma and discrimination against people who have HIV/AIDS (PLWH) or are affected by HIV continue unabated. Although the global pandemic has shown itself capable of triggering responses of compassion, solidarity and support, bringing out the best in people, their families and communities yet stigma and ostracism, repression and discrimination continue to be reported in both the rich developed and poor developing countries of the world. Herek et al reported that AIDS remain a highly stigmatized condition in the United States though the form of expression has changed over the years. Similarly, reports in the literature from Thailand, India, Uganda and Zimbabwe discuss HIV-related stigma in various context and forms in these countries.

The international community had long recognized the limiting effect of HIV-related stigma and discrimination on the control of HIV/AIDS. It is known to undermine the ability of individuals, families and societies to protect themselves and provide support and reassurance to those affected,. To this effect, various declarations and resolutions had been made at regional and international for a recognizing the delectating effect of stigma on mitigation efforts of HIV prevention and control programmes. The making of these various declarations of commitments had spanned over 15 years with the recent ones including the resolution 49/1999 of the UN Commission o Human Rights which affirmed that

“Discrimination on the basis of HIV or AIDS status, actual or presumed, is prohibited by existing international human rights standards and that the term ‘or other status’ in non-discrimination provision in international human right text should be interpreted to cover health status, including HIV and AIDS”.

In recent years, the paragraph in the Abuja declaration on HIV/AIDS, tuberculosis and other related infectious diseases made in April 2001 states in point 12 that

“We are aware that stigma, silence, denial and discrimination against people living with HIV/AIDS increase the impact of the epidemic and constitute a major barrier to an effective response to it. “

Also, the Declaration of Commitment on HIV and AIDS made during the UN special session on HIV and AIDS on the 27^th of June 2001 noted in paragraph 13 that

“Stigma, silence, discrimination and denial as well as lack of confidentiality undermine prevention, care and treatment efforts and increase the impact of the epidemic on individuals, families, communities and nations and (this) must be addressed”.

The session finally went on to make resolutions (paragraphs 58-61) which should help in the realisation of human rights and fundamental freedom for all so as to reduce vulnerability to HIV infection in view of stigma and discrimination associated to the infection.

Despite all these declarations of commitments and call for action made over the decade, the full understanding of what drives the epidemic of stigma remains an enigma. Fundamental questions still remain about its causes and persistence despite increasing awareness and knowledge about HIV and how to effectively confront it.

This report describes a study, which tries to unravel some of the issues surrounding stigma in Nigeria. It had tries to investigate the forms HIV–related stigma takes, the context it occurs and its various determinants in Nigeria. It then uses this to analyse existing policies, pronouncements and programmes in the country to identify their successes, gaps and barriers they create in HIV and AIDS control and mitigation efforts in the country. Finally, the study comes up with recommendation for future actions and directions.

Background

HIV-related stigma and discrimination has been identified as a universal phenomenon which occur in every country and region of the world. It was identified as the ‘third epidemic’ early in the history of HIV by late Jonathan Mann; the first being the hidden but accelerated spread of HIV while the second was the visible rise of AIDS cases.

Stigma continues to be potentially the most difficult aspect of the HIV epidemic to address. However, addressing it would likely be the key to overcoming/reducing the impact of HIV/AIDS in its various ramifications and the key to tackling the first two epidemics identified by late Jonathan Mann.

In recognition of the potential importance of combating stigma and discrimination, the worlds AIDS campaign for the year 2002 – 2003 focuses on stigma, discrimination and human rights. The main objective of the campaign is to prevent, reduce and ultimately eliminate HIV-related stigma and discrimination wherever it occurs and in all its forms.

HIV-related stigma and discrimination is triggered by many factors. These include a lack of understanding of the disease. Many do not understand that HIV and AIDS cannot be transmitted through everyday contact. Myths also exist about HIV transmission. Lack of treatment, irresponsible media reporting on the epidemic, the fact that AIDS is incurable, social fears about sexuality and fears relating to illness and death are factors that further fuel the epidemic of HIV-related stigma.

Unfortunately, this has led to shame and secrecy associated with the epidemic all over the world both at individual and government levels. It has also led to fear and silenced open discussions about the causes of HIV and AIDS and the appropriate response that needs to be taken at all levels. There is also increased vulnerability of individuals infected and affected by HIV and AIDS. Individuals feel guilty and ashamed leading to depression, lack of self worth, despair. In extreme cases, premature death through suicide has been reported. Individuals feel guilty and ashamed, are unable to declare their serostatus openly and express their views and opinions, which could positively contribute to the control of the HIV epidemic. This secrecy in turn had led governments, politicians and policy makers continue to deny that the need for urgent actions,. The various regional and international declarations are often not backed up by national legislations and programmes. The picture of the global epidemic therefore continues to appear gloomy especially in developed countries.

Presently, 70% of the total global population of 40 million lives in sub-Saharan Africa. 90% of all people infected with HIV and AIDS live in the developing countries. AIDS has reduced the life expectancy of the region by 15 years. Stigma still remains one of the most significant challenges in this region for all HIV/AIDS programmes across the prevention to care continuum. It has continued to increase the vulnerability to infection as fear of being identified with HIV keeps people from learning about their status and seeking for treatment. It also prevents those at risk of infection and some of those affected from changing their behaviour to prevent infecting others in the belief that behaving differently would raise suspicion about their HIV serostatus. Access to health care services has also been limited by stigma, as many health workers do not understand that the adoption of simple precautionary measures can prevent transmission of infection.

Unfortunately, the vulnerability of women, young adults and children is most often increased in these same developing countries due to cultural norms and practices, existing social prejudices which had discriminately related with these vulnerable group of people. Women are erroneously perceived as the main transmitters of STIs including HIV infection and are often treated differently from men. Whereas men are excused for their behaviour that resulted in infection, women are not; they are rejected by wider family members and are blamed for the AIDS related death of their husband. These all, together with stigma, provide highly combustible fuel for the epidemic.

The resulting impact of HIV-related stigma and discrimination then becomes astronomous. If affects the capacity of societies to respond constructively to the devastating effect of the epidemic; silence continues to prevail and action remains slow. In Nigeria, a community wherein HIV-related stigma is strongly felt, the prevalence rate had continued to increase. Life expectancy had fallen from 53 years in 1990 to 5 years in 2002 largely due to AIDS. Resources needed for care and support by the health sector would soon exceed 35% of the health budget with mounting effect on hospital bed utilization and there are an increasing number of orphans generated by the epidemic (about 900,000 orphans were reported in 2001).

This catastrophe calls for more to be done. Part of the response lies in addressing the existing widespread stigma and discrimination, which still remains poorly, understood particularly in developing countries. Internationally, there has been a resurgence of interest in HIV/AIDS related stigma and discrimination triggered at least in part by the growing recognition that negative social responses to the epidemic remain pervasive even in seriously affected communities.

A review of abstracts from peer reviewed studies, regional and international conferences show that very few studies on HIV related stigma in developing countries had looked at the forms, consequences, context and determinants of HIV-related stigma. A few studies had studied the result of stigma interventions with results showing that programmes, which foster direct contact with PLWHA, are more effective. However, very little has been done on analyzing the effects of policies and pronouncements on HIV-related stigma and discrimination. Rarely are there studies, which examines notions of stigma and discrimination interrogating them for their conceptual adequacy and their usefulness in leading to the design of effective programmes and interventions. Similarly, not much appears to have been done about policies and its effects on HIV-related stigma.

This study tries to address some of these gaps. It tried to identify successes, gaps and barriers created by existing national policies and government designed programmes in Nigeria and makes appropriate recommendations for future policy/programme review and design/redesigning. Specifically, it

1. Firstly, it tries to identify the forms HIV-related stigma takes in Nigeria, the context it occurs and its various determinants.

2. Secondly, it appraises the link of HIV-related stigma in Nigeria to broader inequalities, injustices and denials of individuals’ realization of human rights and fundamental freedom.

3. Thirdly, it analysis existing government policies, pronouncements and programmes in terms of how it has/can efficiently and effectively tackle the problem of HIV-related stigma

4. Finally, opportunities for action across each and every regional/international declaration of commitment made by the Nigerian Government to tackle HIV-related stigma are identified.

Theoretical framework

Defining stigma and discrimination: Stigma is often described as a significantly discrediting attribute possessed by a person with an undesired difference. It results in the reduction of a person or group from a whole and reduces the person to a tainted and discounted one. It is a quality that ‘spoils’ an individual/groups identity rendering them ‘unworthy’ in the eyes of others. Those stigmatized are regarded negatively while stigmatizing individuals or group conforms to their own ’normalcy’ and legitimizes their devaluation of the ‘other’.

Stigmatization is actually a dynamic process of devaluation and has ancient roots in long existing cultures that branded people/groups as outcasts. It exists within the context of power wherein individuals/groups targeted are identified and labeled ‘tainted’ from the usual people by associating negative attributes with the labeling. This results in a separation of ‘us’ from ‘them’. The stigmatizing response that results is that the ‘them’ are perceived as non-persons with the ‘them’ eventually losing status and been discriminated against.

Parker and Aggleton suggest that stigma is a product of relationships based on power control in which the dominant group legitimizes and perpetuate inequalities thereby limiting the ability of the stigmatized to resist because of their entrenched marginal status. The resulting effect is that of reduction in life chances of the stigmatized through the process of development of negative thoughts, which leads individuals to do things or omit to do things that harm or deny the stigmatized services or entitlements. This is called discrimination.

Discrimination occurs when a distinction is made against a person that results in is or her being treated unfairly and unjustly on the basis of belonging or being perceived to belong to a particular group. Discrimination is a negative act that results from stigma and serves to devalue the stigmatized. Because of the link between the two concepts - stigma and discrimination - this work does not conceptualize the two terms as separate entities.

HIV-related stigma and discrimination. This had arisen out of a response to fear, risk or threat of HIV infection been incurable, highly contagious and can be deadly. The HIV epidemic spreads rapidly with so much uncertainty about how the disease spread, threatening community values. This evokes a stigmatizing response as stigma is used to enhance or secure social structuring, safety and solidarity and to reinforce societal/community values by excluding divergent or deviant ones

HIV-related stigma becomes more intense as it builds upon and reinforces earlier negative thoughts. It reinforces dominant ideologies of good and bad with respect to sex and illnesses, proper and improper behaviour as HIV infection is believed to arise from deviant behaviour and caused by individual’s irresponsibility. PLWH are often believed to be deserving of whatever fate befalls them, because they have done something perceived by the community as wrong. Oftentimes, these ‘wrongdoings’ are linked to sex especially ‘improper/pervasive’ forms of sex and the infection is therefore a form of punishment. Men who become infected may therefore be seen as having patronised sex workers while women with HIV infection are viewed as promiscuous or are sex workers.

The family and community often perpetuate stigma and discrimination partly out of fear, partly out of ignorance and partly because it is convenient to blame those who are affected first as it is seen to bring shame on the family and the community. PLWHA and those affected by the infection are therefore denied the love and friendship of family and friends. Oftentimes, they are ostracized from homes and communities with little or no care and support.

In the workplace, PLWH lose their jobs because of perceived increased vulnerability of colleagues to HIV infection when working together. The employers also feel that HIV infection translates to increased man-hour loss, increased tendencies for health benefits and compensations. This therefore manifests as discriminatory hiring and promotion practices, establishment of unfair benefit packages, limiting coverage for HIV positive employees and in a number of case, outright dismissals.

The government also perpetuate stigma and discrimination through enactment of rules, laws and legislations which prohibit PLWHA from occupations and types of employment, limits international travels and migration, restricts certain behaviours such as sex work and homosexuality, and compulsory screening and testing of groups and individuals and failure to respond to the care and support needs of PLWHA. This in turn leads to a false sense of security and complacency of those not belonging to the stigmatized group.

HIV–related stigma has been further distinguished as felt and enacted stigma. Felt stigma is more prevalent and this is described as the feelings that individuals habour about their condition and the likely reactions of others. This often makes the individual react negatively to society with a feeling of shame and guilt oftentimes resulting in depression and withdrawal symptoms. The tendency for this increases in the African culture which is predominantly collectivistic; individuals are defined as part of a group such as families rather than independent entities. A HIV positive status therefore castes a negative reflection on the group and not on oneself. This increased the feeling of guilt, shame and loss of face. On the other hand, there is the enacted stigma, which refers to the actual experiences of stigma and discrimination.

There are also reported cases of secondary stigma wherein people associated with PLWH become stigmatized. These include children, spouses, friends, relatives and carers. They end up also experiences discrimination as they are erroneously assumed to be infected.

Many also who had had to face stigma before the HIV epidemic now faces reinforced stigma during the epidemic when infected with HIV thereby compounding pre-existing stigma. HIV/AIDS justify further marginalisation of such people enhancing deeply rooted prejudices. Unfortunately people who often experience dual/compound stigma often have fewer resources to cope and resist stigma. For men who have sex with men, sex workers and intravenous drug users – groups of people with high-risk behaviour – HIV infection compounds the already existing institutional stigma problems

In conducive environments, PLWH may face positive discrimination wherein an infected individual is selectively selected out for undue favour and favouritism because of his/her health status. They are related to as the ‘weak one in the pack’ who is entitled to all forms of luxuries and exigencies otherwise not merited.

Although the images associated with HIV/AIDS vary just like the virus itself, they are patterned to ensure HIV-related stigma reinforces existing societal inequalities and the solution remains as elusive as a cure for the infection.

Implication for enquiry

The dynamic and ever evolving nature of HIV-related stigma makes it complicated to tackle. This study tries to understand HIV-related stigma and its effects in the Nigerian context, taking it from the starting point of stigma being a discrediting attribute and moving on to conceptualise stigma and discrimination as intimately linked to the production on social differences; social differences wherein group of people are identified as ‘good’ in reference to the ‘bad’ stigmatized group. It would be discussing how adept policies and programmes on HIV-related stigma can be formulated/redefined based on analysis and understanding of its forms, context and determinants in Nigeria.

Study design and method

The project described here studies the forms, context and determinants of HIV-related stigma in Nigeria in an effort to analyse and provide suggestions and directions to programmes and policies that tackle stigma in the country. This project was conducted over 6 weeks between September 2003 and October 2003. Data was collected through the use of open ended questionnaires designed to elicit specific information from persons, personal key informant interviews, telephone interviews of key respondents and the use of e-mail based discussions.

The key components of the study are:

1. Baseline survey to determine key issues: factors and determinants of HIV-related stigma and discrimination in Nigeria.

2. Analysis of key policies, pronouncements and programmes on HIV/AIDS stigma and discrimination in Nigeria

3. Compilation of case studies of best practices from the African and global context.

HIV activists, PLWH, persons affected by HIV/AIDS, women infected and children of infected parents, home base care providers, men who have sex with men, religious leaders, health professionals, educators, journalists, lawyers and employers were interviewed.

Information was sought on individual’s understanding of HIV-related stigma, those who are affected by the stigma, those who stigmatise, where HIV-related stigma occur, its possible causes and its varied effects. The study also sought suggestions on possible ways of tackling HIV-related stigma.

An analysis of reports in the print media was also included so as to assess whether or not there was a link between the language used by the media and a fueling of the HIV related stigma crisis. The study also tried to assess whether there was a link between the language used by the press and the derogatory language used by people in the community when referring to PLWH.

All existing key national policies were analysed. These included: the 2003 edition of the National Policy on HIV/AIDS, the 2002 HIV/AIDS workplace policy, the 1996 National Health policy, the 2001 National Policy on Reproductive Health, thr 2001 draft National policy on Women, The 2001 draft National Policy on Population and sustainable Development, the 2002 National Policy on the Elimination of Femal Genital Mutilation in Nigeria, the 2002 Children and Young People’s Bill and the 1995 National Adolescent Health Policy.

All existing regional and international/regional conventions and declarations of commitment and pronouncements, which Nigeria ratified, were analysed to examine for its possible inclusions in the national response activities. These included the UNGASS declaration of April 2001, the UN special session declaration of commitment of June 2001, The International Convenant on Economic, Social and Cultural Rights 1966 and the International Convenant on Civil and political Rights 1966.

A review of the 1999 Constitution of the Federal Republic of Nigeria and the Criminal Law of Nigeria were also undertaken to assess how the law relating to the bill of right, grants and pensions, insurance, health, children and criminal law, protects the human rights of individuals against HIV related stigma and discrimination.

The HEAP, which strategically outlines the national plan of action for HIV/AIDS over three years from 2001-2003, was also analysed for possible HIV-related stigma reduction activities.

The author subscribed to an e-mail listserv discussion on stigma (AF-AIDS)* and HIV so as to be able to learn about practices from other nations in controlling HIV-related stigma. Extensive reviews of reports of from other nations were also undertaken. These include a study of the report from the International Centre for Research and Women’s (ICRW) on HIV-related stigma in Ethiopia, Tanzania and Zambia (2003), a study on Uganda and India reported by UNAIDS (2000), studies in children and youths infected and affected by HIV/AIDS in South Africa by Save the Children (2002), and studies in the workplace reported by the Global Business Coalition on HIV/AIDS (2003).

Finally, the author undertook a review of all abstracts that popped up during an electronic search using the Medline search engine. The Key word entered for the search was HIV-related stigma. A review of a compilation of all abstracts and articles published by the data bank of the Nigerian Institute of Medical Research, Lagos was also reviewed. Published peer reviewed articles downloaded from various referenced websites were also reviewed for this project.

Results

1. The Concept of stigma

Stigma continues to be defined in different ways by different people. The various definition of stigma helps to understand the different conceptualization of stigma. Recurrently, stigma has more often been used as a language of attribute rather than relationships²³ and subsequently, practice has often transformed stigma or marks into attributes of persons. The stigma or mark is seen as something in the person rather than a designation or tag that others affix to the person. It develops from cultural stereotyping which then gives rise to the development of prejudices that lead to an emotional reaction. Discrimination is the behavioural consequences of prejudice.

Stigma as defined by many experts also varied but reflected a single concept. Examples of some of the definitions are:

“Attaching bad names, bad feelings or shameful meanings to a situation that may appear not to be agreeable to ones feelings or value”

Femi Soyinka, NELA, Ibadan

“It is a negative social label that cast aspersion on an individual or group of persons. It could be a thought, belief, action or utterance based on preconceived notion”

Lekan Olufodurin, Media Development Network, Lagos

“Stigma is a negative labeling of some sort”

Bunmi Lawal, Nurse, Educationist, Ile-Ife

“Stigma is a bad label on something you do not know about”

Dare Odumuye, Alliance AIDS Initiative, Ibadan

“It is a powerful and debilitating way of treating a particular group due to perceived thought about them. Stigma often breeds negative reaction against some people as such people are shunned, rejected and treated with disdain”

Ebenezer Durojaiye, Centre for the Right to Health, Lagos

“It is an evil and bad happening attached to someone”

Stephen Kitchener, Nigerian Medical Association

“A conscious or subconscious manifestation of negative attitudes towards people on the grounds of an assumed or actual difference”

Matt Greenall, International AIDS Alliance, UK

“Society constructs specific norms/values in order for it to function. Anything that disrupts society is stigmatized. HIV/AIDS …. pose a threat to the security of societal norms/values and this is society’s way of protecting itself – by blaming a specific group of the problem of infectious diseases – this attitude gives a type of self imposed safety attitudes towards itself”

James Hoyt, HIV political activist and researcher, USA

The concept of stigma as defined by the various individuals connotes that stigmatization is a negative concept with an associated negative action.

It is however important to define HIV related stigma from the perspective of people living with HIV/AIDS. This is because studies could be conducted from the vantage point of theories that are uninformed by the lived experience of the people they study. When little priority is given to the words and perceptions of people studied, misunderstanding of the experience results and there is continued perpetuation of unsubstantiated assumptions. HIV-related stigma as defined and understood by some people living with HIV/AIDS include:

“Stigma is an act of abandonment or rejection of someone“

Kenny Akintifonbo, Living Hope Care, Ilesa

“Stigma is something that puts fear in the heart or makes an individual to isolate his/herself from the community”

Kehinde Omotoso, Living Hope Care, Ilesa

“Stigma is a negative branding or labeling which leads to a feeling of unworthiness, devaluation, shame and disgrace. It often results in spoilt identity and discrimination”

Rolake Nwagwu, Treatment Access Movement, Lagos

These definitions do not differ significantly from the conceptualization of stigma by researchers in terms of content. In all, the term stigma tends to be applied for situations where elements of labeling, stereotyping, separation, status loss and discrimination co-occur in a power situation that allows the components of stigma to unfold²⁵. It may occur without knowledge. Oftentimes, it is an unreflective action which comes from unconscious inputs from events encouraged by multiple factors such as culture. Thus in studying and understanding stigma, one needs to focus on both the stigmatized and on those who do the discrimination – the producers of rejection and exclusion.

2. Forms, context and determinants of HIV related stigma in Nigeria

Varied forms of HIV-related stigmatization were identified during the study. It includes employment loss, reduced access to health care, rejections from friends and family. There are also ranges of contemporary behavioural responses to HIV related stigma. This varies from withholding of help, to avoidance including landlords who will not lease houses to people infected with HIV or employers who would not hire people living with HIV. Cases of segregation had also been recorded as well as coercion (mandatory treatment or criminal justice behaviours). There have been nationally reported cases of children of people living with HIV/AIDS expelled from school and a person living with HIV denial access into a court room because of her status.

“I have had to face stigma from a sister-in-law. My parents and siblings know of my HIV status and care for me but my sister-in-law keeps her distance from me along with her children. Her embarrassing acts made me leave the house we were living in together. I had to take up a new place of my own.”

Sikirat Lasisi, NELA, Ibadan

“There was the case of a serodiscordant couple. The husband was HIV positive. As soon as he learnt of his status, he informed his wife so that she could also get tested. She however tested negative. Following the test, the wife has been treating her husband so shabbily even when other members of his family show him love and care.”

Kemi Adejumo, Home Base Care provider, Ibadan

“I was stigmatized when I was receiving medical care in the University College Hospital, Ibadan. I developed ear and eye problems following my diagnosis. Once when I went to the ear clinic, the consultant informed me that I needed to wash my ears and she wondered why that had not been done. On reading my case note, she decided to place me on drugs and never discussed the ear wash again. The same thing happened at the eye clinic. Despite the fact that I kept complaining of deterioration, I was never slated for surgery to remove my cataract even when others had surgery done for them. I kept using drugs, which were not working. I finally stopped attending the clinics”.

Tajudeen Raji, NELA, Ibadan

“I worked with Pacific Freightliners Limited, Ojota, Lagos, for 10 months before being laid of on the 12^th of October, 2001 after testing positive for HIV. The company got to know about my status because they had to report back to the company on every staff that received medical treatment from the hospital. I presently find it difficult to get any new employment. My only alternative is to resort to farming as a source of livelihood. I find this quite difficult after been gainfully employed for 11 years”

Femi Ibitayo, Living Hope Care, Ilesa

“I have been ejected out of my house twice because of my HIV status. I have gone public about my status and so I am easily recognised in the community. Presently, I live within the hospital where I have a corner to myself. At the end of each day after counseling new clients diagnosed with HIV in the hospital, I go to sleep in my little corner.”

Titi Adeniyi, Living Hope Care, Ilesa

“In the course of my work, many of my clients who come to us to seek legal advice have experienced stigma from various sectors. There was a case of a young man who complained of been denied an opportunity to marry his partner because of her HIV status despite the fact that he was willing to marry her”.

Ebenezer Durojaiye

“Once a television service cooperation in Nigeria refused to allow the Ambasadors of Hope Mission participants (people living with HIV/AIDS) to enter the television house for a programmed event for recording and broadcasting”.

Femi Soyinka

“I recall the case of a lady living with HIV who was relieved of her duty as a Sunday school teacher in the Children’s Department in church because the parents fear that their children could be infected.”

Lekan Otufodurin

Cases of associated secondary stigma also occur. This usually occurs with home base carers and relatives of persons living with HIV/AIDS. Although the level of stigma for the care givers is less than for those infected, nevertheless, they are also stigmatized.

“There was once I noticed that people started watching and noting houses I go to visit. It was assumed that any house I enter, the occupant must be infected with HIV. One of my clients once asked me to stop visiting her at home because my presence was causing a lot of suspicion in the neighbourhood about her possible HIV status”

Bola Oke, Home base carer, Ile-Ife

“People appear to have stigmatized our institution. They do not want to be associated or seen in the building. They feel that people coming to our organization have AIDS or have relatives living with AIDS”.

Femi Soyinka

Usually when people are identified as being infected with HIV, they tend to be sneered at, talked to in a derogatory way or isolated. Feeding utensils are separated even in the homes and in some cases; there is outright neglect and abandonment.

“There is a 28year old lady, a member of our support group, who was isolated by her family members because she was HIV positive. She was put in a room and given all necessary household utensils for her sole use. When the public started getting to know about her status, she was then sent packing from the house.” Kehinde Omotoso

“There was once a young girl in Ejigbo (Osun State) who was diagnosed HIV positive. She was quiet ill at the time of diagnosis. Once the parents learnt of the serosatus, she was moved from the main house into the uncompleted building at the back of the compound. She was fed like a dog. It was when the home base care team started visiting that their attitude gradually changed.”

Ibiyemi Fakande, Home Base Carer, Ilesa

Although quite a number of forms in which stigma is enacted by the various sectors in the community were enumerated, self-stigma was also identified. This self-stigmatization occurs as a result of enacted stigma, which affects labeled persons in important ways. Many people who are infected with HIV are aware of the HIV related stigma. Like the public, some agree with the stigma and apply it against themselves. The individual then avoid social behaviours and processes that increase the chance of identification as a person living with HIV and thus a potential object for stigmatization. One person living with HIV reiterated:

“I do not subscribe to the antiretroviral programme of the organization even though I can afford it because daily intake of the medical pill would make people suspicious about my HIV status. I still want to marry”

S.F., Living Hope Care, Ilesa

Apparently, women are worst affected by stigma in the community. The Nigerian culture and value system increases their vulnerability. This is because of the long-standing ideology that women are the direct and indirect vectors of STIs. This influences the way family and community members react to HIV positive women. Most times, people living with HIV/AIDS receive care and support from their immediate families but there are a number of reports of women being ill treated by their husband’s relatives who outrightly accused them of being the source of infection of their son’s infection. One of the home care provider interviewed reported:

“Because women are already culturally disadvantaged in the country, they are easily accused of infecting their husbands witHIV/AIDS” Ebenezer Durojaiye

Other groups of people were equally identified to be badly affected by HIV related stigma because of their increased vulnerability. These are the sex workers, prisoners and men who have sex with men.

“Sex work is criminalized under the Nigerian law. The society already has a negative impression about sex work. Sex workers become further stigmatized when they become infected with HIV. The perception of the society is that an HIV positive sex worker needs no support since she is merely reaping the fruits of her promiscuity. Prisoners are seen as dishonoured members of the society. Therefore, when they become HIV positive, the society tends to shun them the more.” Ebenezer Durojaiye

For many, it is believed that fear arising from poor knowledge and understanding about the possible sources of infection is a main course of stigma. The belief that HIV infection is as a result of a lifestyle not acceptable or in conformity with the acceptable norms/values of the society further reinforces the process of stigmatization and discrimination of people living with HIV/AIDS. The fear of death arising from a communicable disease that has no cure further heightens the tendency for discrimination and ostracization of people infected with or suspected to be infected with HIV.

“Many of those who stigmatise people living with HIV/AIDS lack adequate and correct information about HIV/AIDS. Ignorance about the epidemic is not limited to the uneducated. It also exhibited by the elites. For instance, a High Court judge had ruled that unless expert evidence is provided that the courtroom will not be infected by the plaintiff who is HIV positive, she could not enter the court.” Ebenezer Durojaiye

“Many usually think it affects only people who are promiscuous. Because of their level of ignorance about the disease, many are not too comfortable relating with PLWH. Even in religious circles, they are sometimes treated as outcast without much care and support.”

Lekan Otufodurin

An association between stigma and ignorance has long been demonstrated though the nature of the relationship is unclear. Educational programmes do create enlightenment but often do not take care of people’s deep fears. A further understanding of the possible causes of HIV related stigma may give insights into how to best tackle this epidemic. Other perspectives to the possible cause of HIV related stigma include:

“HIV stigma arises because the disease is incurable Stephen Kitchener

“The feeling of righteousness or superiority – spiritually, socially or financially – encourages stigmatization.”

Femi Soyinka

But then, stigma associated with discrimination and ostracisation has had an enduring history in the country long before the HIV epidemic. The Nigerian legal system had long labeled groups of people as ‘bad’.

“Section 214 and 215 of the criminal code of Nigeria label men who have sex with other men, commercial sex workers and intravenous drug users as ‘bad’ people by criminalizing their choice of lifestyle. The people in the ‘good’ group then point fingers“

Ebenezer Durojaiye

Also, the Nigerian culture has a long history of labeling. The culture has in many ways instituted the violation of human rights. In Igboland, Southeastern Nigeria, there is the “osu” caste system where people from a particular lineage were meant to be sacrificed to the gods and are not fit to marry other ‘normal’ citizens. People with diseases such as epilepsy and psychiatric illness had long suffered stigmatization. HIV related stigma has only built on a system that readily stigmatizes and discriminates as a justifiable means of societal preservation when ignorance and misconceptions prevails. The tendency to stigmatize readily increases in a society like Nigeria that readily judges and condemns actions with capital punishment.

“Ignorance is often cited as the main cause of stigma but I think stigma can also be created and aided by culture where there is attack on the dignity of people and where references are made to specific groups and behaviours in judgmental ways in particular; where there is lot of talk of morality”

Matt Greenall

Even though societal prejudices had encouraged HIV related stigma, certain factors further promoted its propagation. One of these factors includes media reports of the Nigerian Journalists on HIV related stories. Over the last 4 years, the print media had reported more false information and negative reports on HIV/AIDS than it had done correcting misinformation, misconception and reducing stigma. A look at the table below would give a picture of the print media reporting on HIV news.

“To a large extent, negative media reports on HIV/AIDS contributed to stigmatization of people living with HIV/AIDS. The media remains the main source of information for the public. Unfortunately, they hear and read about the largely negative slants on HIV/AIDS projected by the media. Pictures of people dying with AIDS were often projected creating a hopeless state in the campaign against the virus. Even now that there is improvement in the quality of reporting on the virus, the general public still indulge in stigmatizing of people living with HIV/AIDS because of past reports and persitent negative reporting still persisting in the media.”

Lekan Otufodurin

Year of Report

Total number of HIV/AIDS related stories

Number of reports with false information, negative reports and use of war metaphors

Number of reports on HIV related stigma and discrimination

1999

2000

2001

2002 (second half)

2003 (Jun 10–Aug 10)

144

263

875

332

Also the war language often used by the media in reporting HIV stories creates a sense of emergency action and need for self-preservation. Unfortunately, the people take the war to people living with the virus and not the virus itself resulting in discriminatory actions against people living with the virus. These reports, in an attempt to create a sense of emergency, unconsciously promote stigma and discrimination.

The language used for reporting may however be a reflection of the attitude and predisposition of journalists to HIV. A survey carried out as part of a pre-training assessment during a workshop organized by JAAIDS for leaders of the Nigerian Union of Journalists (Southern Zone) in September 2003, revealed that 50% of the participants did not believe that HIV/AIDS was real (8 out of 16) while 31% (5 out of 16) strongly felt that HIV infection was caused by promiscuity.

“A report on the MSM convention by Nasir Dambatta of the Weekly Trust newspaper published on the 24^th of October was highly stigmatizing. The reported was not at the convention yet he wrote an extensive report on the convention based on personal bias. Unfortunately, Nigerians take the reports of the media as wholesome truths. This kind of bias reporting only aids stigmatization of MSM”

Dare Ogunmuye

Nationally designed programme can also promote stigmatization. Often times, the national HIV prevention and control programmes direct their actions to high risk groups and not people with high risk behaviour. This concept of programme planning and design further reinforces the notion that certain groups of people are the cause of HIV infection rather than the notion of high-risk behaviours which may be applicable to all persons as the risk factor. In addition, awareness-raising messages also help to perpetuate negative images of HIV/AIDS and risk re-enforcing stigmatization of persons infected with HIV.

“The IEC materials are often of poor quality. In particular, they attack the dignity of persons living with HIV. They make reference to specific type of people and behaviours in judgmental ways; they talk about morality and they promote abstinence as the best approach to prevention – abstinence for good people and condom for bad people “

Matt Greenall

Religion had also helped to fuel the HIV related stigma epidemic. The reference to HIV infection as sin and punishment from God helps with the further alienation of the ‘bad people’ from the ‘good people’.

“Religion plays an important role in HIV related stigma. Many religious preach that if you are ill, that is God’s way of telling you that you have done something wrong and that you need to get back on the right path. James Hoyt, HIV political activist and researcher, USA

“People often talk about health care settings as a stigmatizing setup but I think there is a need to take care not to give the impression that health professionals stigmatize more than other people. Perhaps the results of their stigma have more immediate effects. I think many religious institutions create HIV related stigma perhaps not so much as against people living with HIV/AIDS but against people who have sex outside marriage in general, highly affected groups in particular” Matt Greenall

HIV related stigma, like other causes of stigma, might actually be an attitudinal problem with a cultural context to the stereotyping process. Various triggering factors may then be responsible for its expression. This attitudinal concept of the origin of all forms of stigma is further corroborated by the reports of MSM.

“Even within the organization, members who are HIV positive are castigated by those who are not” Dare Ogunmuye

Despite the unfolding understanding of stigma and stigma related behaviour, a lot still needs to be done to further understand this complicated issue. This is moreso in Nigeria where some geographical variation are noted in its context of expression.

“I noticed that more people are open about their HIV status in the Southern part of Nigeria than in the North. This may be because there is more awareness about the disease in the South unlike in the North where a lot of myths about the disease still prevail. “

Lekan Otufodurin

“There is less stigma attached to HIV infection in the Hausa area (North). This may be because of the attitude of the people which overlooks issues and explains it off as God’s wish.”

Stephen Kitchener

Presently, research on HIV related stigma in Nigeria is very sparse. The use of a search engine, the Pubmed, for the listing of abstracts of peer reviewed and published articles on HIV related stigma yielded only 85 articles. None of the articles reported about HIV related stigma in Nigeria. Also, a review of publications by Nigerians on HIV/AIDS over the last decade compiled by the Nigerian Institute of Medical research showed that only 31(6.03%) of the 514 article enumerated were identified to be on Human rights, politics, commitments and action. Of this, 3(9.7%) were on human rights and ethics. The need for more country specific HIV related stigma research cannot be overemphasized in view of the need to identify indicators for stigma which would be used to develop multidimensional measures appropriate for the local context. There is a need to understand the ways stigma is perceived and measured in the various Nigerian cultures as this would enable planning of appropriate strategies and interventions which would mute the self interest that drives HIV related stigma.

3. Consequences of stigma

Stigma, when applied to health conditions, is a globally pervasive problem threatening psychological and physical health at the individual and group level. The poor treatment of an individual because of stigma leads to poor outcomes and perpetuates other adverse health, social and economic consequences for the individual, families and communities often beyond their prevalence in the population. Such consequences include:

a. Poor access to medical care: There are varying reasons for poor access to medical care one of which is stigmatization of people living with HIV/AIDS by health care workers. Stigma is not new to public health neither is it unique to HIV/AIDS. Reports of prejudices, discounting, discrediting and discrimination to persons who are ill or perceived as ill in the health setups have often been reported with infectious diseases that are poorly understood. People are highly attuned to health care workers attitude are less likely to seek treatment for HIV related opportunistic infections in a timely manner in environments they have experiences – or fear that they might experience – discounting, discrediting or judgmental attitudes from health care providers and their staffs²⁶. This in turn limits the effective treatment of HIV/AIDS, predisposes to late diagnosis and encourages further spread of the infection.

Secondly, stigma leads to poor utilization health care facilities even when available. The use of specific health facilities may potentiate the labeling of people who access health care services there. Hence potential customers may opt not to access care as a way to avoid labeling and the resulting discrimination.

“I know of a lady who developed cardiac failure as a complication of her HIV related status. We encouraged her to go to the hospital for treatment, as she would require specialized care. She continually refused this because of her past negative experience in the hospital because of her HIV status. She could afford the cost of treatment and she had so much will to live but she refused to go to the hospital. She later died at home as a result of cardiac failure. Ibiyemi Fakande

For Nigeria, the effect of stigma even limits the success of the ARV programme. For many months after the initiation of the Nigerian Government’s programme on ARV wherein the cost of treatment was heavily subsidized, most of the 25 centres which administered the drugs could not fill its quota of recruiting and managing 25 HIV positive client. Yet the country has an underestimated 3.5million adults living with HIV. Stigma is recognized as one of the factors limiting access to these services

“I know of a couple who would not start the ARV treatment on our center because they refer patients down here for treatment. There is also a societal elite diagnosed at the center who decided to relocate and access treatment somewhere else outside Lagos. She would not want to be seen accessing HIV management.”

Taiwo Adewole, Nigerian Institute of Medical Research, Lagos

Thirdly, even when health facilities and services are accessed, stigma may result in poor compliance with treatment regimens.

“There is a high drop out rate for the ARV treatment programme here. Many drop out because they cannot afford the cost of the drug regimen. A number drop out because of stigma. We however do not have the statistics to corroborate this because follow-up of clients at home is a task the center finds really hard to combine with our patient’s clinical management programme. Taiwo Adewole

Conversely, the increasing accessibility of persons infected with HIV to treatment and antiretroviral therapy would drive the HIV epidemic further underground. This is because stigma prevents people from opening living with their status and with ARV therapy, individual health is improved and so would be the tendency to live in secrecy about HIV status.

“I have clients on antiretroviral therapy who are less likely to declare their status because of stigma. They are much healthier and have everything to lose by telling people they are HIV positive” Femi Soyinka

b. Interference with prevention programmes: Stigma may influence HIV risk behaviour. Lowered self–esteem that results from self-stigma may negate motivation for self protection (consistent practice of safer sex) leading to multiple sexual encounters in an attempt to seek self-validation. Also, it may lead to use of alcohol or substances that impair judgment and interfere with a person’s ability to negotiate and practice safer sex. This all leads to interference with prevention programmes. For many the fear of receiving a positive result remains a potential disincentive to voluntary counseling and testing.

“In a research I conducted, more than 70% of the 221 women I interviewed were ready to do a VCCT. However, over 90% of the other 30% who were not willing to do a test said stigma was the reason for not wanting to know their status ”Ebun Adejuyigbe, Paediatrician, Ile-Ife

This result is similar to that of the study by Msobi et al done in Dar es Saleem. Although stigma may not be the sole contribution to many individuals not testing, clients are however more likely to seek out and follow through with HIV testing services they perceive to be non-judgmental²⁶. The Center for Disease Control and Prevention unequivocally asserts that stigma hamper prevention and there is need to work towards minimizing these negative consequences. This is even moreso for stigmatized groups and individuals whose HIV positive status would worsen their plight in the community.

“Stigma and discrimination feeds the secrecy in which MSM live and socialize. Taking a test and finding out one’s HIV status may mean disclosing one’s sexual orientation, facing stigma as an MSM and as been HIV positive. Non friendly services and an unfriendly legal environment increase the tendency for not taking an HIV test.”

Dare Ogunmuye

For some that know their serostatus, non-disclosure even to relevant relations such as spouses, have been a major identified way of coping with the possibility of HIV related stigma. This may negate the practice of safer sex and in turn, interfere with prevention efforts.

“We had a person living with HIV/AIDS in our organization who never disclosed her HIV status to her husband for over 3 years after diagnosis until he died. She felt the stigma she would face from her husband and the family would be more than she can cope with.”

Ibiyemi Fakande

c. Status loss: With stigma, the stigmatized is placed lower in status hierarchy. This in turn can have an effect on the individual’s life chances because the lower status itself becomes the basis of discrimination. Low status may make a person less attractive to socialize with, to involve in community activities. In this way, stigma can have a cascade of negative effects on all manners of opportunities for the stigmatized.

d. Effect on business: Whether woven into company policies or unintentional, stigma can be pervasive in the workplace and discriminatory HIV practices hamper company operations. Because of stigma, HIV positive persons do not apply for jobs because they fear discrimination and feel they will not be hired based on their status. Even with a company policy in place, the attitudes of fellow workers can also have a negative impact and hampers the use of company organised health care facilities because of concerns of confidentiality and privacy. This results in compromised employee health. Unfortunately, many employees fail to acknowledge the possible effect of HIV on their business presently or in the future. Denial was the order of the day.

e. Effect on HIV related activities: Stigma also has its negative consequences and effect on activities of oragnisations working towards mitigating the impact of HIV/AIDS in Nigeria.

“As a journalist, HIV related stigma adversely affect my job because more people are not willing to openly decal re their HIV status. The media is therefore forced to continue to use pictures of the same few individuals out of the over 3.5 million infected Nigerians who openly declare their status. In the Nigerian situation where many do not believe about the existence of the virus until they hear personal testimonies, the job of the media is then made difficult.”

Lekan Otufodurin

“Stigma affects my work as a home base care provider. Unfortunately, this often emanates from the people living with HIV/AIDS that we work with and their family members. They often refer to us as vultures who use their plight and situations to make money. This can negatively affect the zeal to work.”

Kemi Adejumo

“People living with HIV/AIDS become more difficult to access and work with, making intervention programmes harder to introduce and sustain.”

Bunmi Lawal

f. Effect on children of people living with HIV/AIDS: Stigma makes disclosure of parent(s)’s status to children difficult. This is worrisome, as parent(s) cannot prepare the children for their death or prepare them to be card for by others. This only increases the children’s vulnerability. Less than 20% of the people living with HIV discussed with during this study had disclosed their status to their children.

“I did not tell my daughter about my HIV status because of her possible reaction.I live with my parents. My siblings and father had shown very little care and support for me. My child might also react negatively if she knows" Toyin Idowu, Living Hope Care, Ilesa

“My child comes with me to support group meetings but she does