A talk Hosanna gave in the Scottish Parliament on Stigma, September 14, 2017. Please enjoy the reading!
Stigma- 14th September 2017
Living with HIV, we hear the word Stigma all the time. So what does it mean this little word? Let us consult our dictionary…
NOUN, plural stigmata
[stig-muh-tuh, stig-mah-tuh, -mat-uh] /ˈstɪg mə tə, stɪgˈmɑ tə, -ˈmæt ə/ (Show IPA), stigmas.
We still face stigma today as people living with HIV. A more subtle and covert kind of discrimination in our health care settings and day-to-day navigation. If people know of your status they start to judge you, wonder, and at times bluntly ask, how you got HIV.
Desmond Tutu in July 2004 he stated, “Silence kills, and stigma kills. We should not want those living with HIV to be the modern equivalent of the biblical leper who had to carry a bell and a sign saying, “I am unclean.” (Archbishop Desmond Tutu, July 2004).
HIV-related stigma is a significant problem globally. It inflicts hardship and suffering on people living with HIV and interferes with research, prevention, treatment, care and support efforts. It is common knowledge that with HIV it is not the condition itself that hurts most –but the stigma and the possibility of rejection, discrimination, misunderstanding and loss of trust that PLWHIV have to deal with.
HIV-related stigma according to UNAIDS- described as:-
Negative beliefs, feelings and attitudes towards people living with HIV, their families and people who work with them. Often reinforces existing social inequalities based on gender, race, ethnicity, class, sexuality and culture. Stigma affects many vulnerable populations who are disproportionately affected by HIV. Prejudice and hostility against homosexuality, drug use, poverty, migration, transgender status, mental illness, sex work and racial, ethnic and tribal minority status predates the AIDS epidemic. They intersect with, and compound HIV stigma.
HIV related discrimination- also known as enacted HIV stigma, refers to the unfair and unjust treatment of someone based on their real or perceived HIV status. Discrimination also affects family members and friends, caregivers, healthcare and lab staff who care for PLWH. The drivers of HIV-related discrimination usually include misconceptions regarding casual transmission of HIV and pre-existing prejudices against certain populations, behaviors, sexual practices, drug use, and illness. Discrimination can be institutionalized through laws, policies and practices that unjustly affect PLWH and marginalized groups. (UNAIDS. Reduction of HIV-related stigma and discrimination. Guidance Note. 2014. www.unaids.org/en/resources/documents/2014/ReductionofHIV-relatedstigmaanddiscrimination).
The problems identified by stigma and discrimination add barriers which weaken the ability of people and communities to protect themselves from HIV and, if they are living with HIV, to stay healthy. For a person living with HIV there is fear of stigma, discrimination and potential violence, often deterring people from disclosing their status to family, friends and sexual partners. This in turn can increase isolation and undermine their ability to access and adhere to treatment, and negate prevention efforts such as using condoms and not sharing drug equipment. Enacted stigma can, among other effects, result in losing housing and jobs, being ostracized by family, and being treated badly in healthcare facilities.
The way people experience stigma varies across countries and communities. Stigma discourages people from seeking information and programs, for fear it will make others think they have HIV, are (especially within the African community ) promiscuous or unfaithful, or are members of populations associated with HIV, like drug users who inject, sex workers and gay men. It can make people less likely to get tested for HIV, use condoms, ask their partners about their status, use clean needles and injection equipment, or access biomedical prevention options such as male circumcision and pre-exposure prophylaxis (PrEP).
Coping with Stigma as people living with HIV:-
This can be done on several levels. Some people, on diagnosis, may feel a sense of worthlessness, and anger at the person they think gave them the HIV, Frequently they suffer depression. However many learn to cope with and manage the stigma. A successful outcome significantly depends on the kind of network they have, especially with family and friends.
Social Support, such as we offer at Hwupenyu, which is culturally/language sensitive to the needs of Africans LWHIV demonstrably helps lessen the impact of stigma. A study of African American PLWH found many had experienced stigma and discrimination, but the impact was softened by having non-PLWH in their social networks express an interest and take the initiative to offer help. Connection with other PLWH gave them an opportunity to share their feelings and to fight for their rights (Mosack KE, Stevens PE, Brouwer AM, et al. Shared illness and social support within 2 HIV-affected African American communities. Qualitative Health Research. 2015 Oct 28).
A study of young African American men who have sex with men (MSM) found that stigma of racism and homophobia was associated with delayed HIV testing, but that men with peer support tested earlier (Scott HM, Pollack L, Rebchook GM, et al. Peer social support is associated with recent HIV testing among young black men who have sex with men. AIDS and Behavior. 2014; 1:913-920).
Coping can be difficult for persons in already stigmatized communities who then identify as HIV-positive. Many PLWH do accept their HIV status, become pro-active and lead a full life. Others require adequate treatment for mental health issues such as depression and anxiety. The key aims are acceptance of one’s diagnosis, this can be achieved through peer mentors who are fully trained, providing a protective buffer against stigma and promoting acceptance of lifelong HIV treatment.
How to address stigma
Stigma exists, and should be targeted, at multiple levels: individual, inter-personal (family, friends, social networks), organizational, community and public policy. Involving PLWH in the design, creation, implementation and evaluation of stigma reduction programs is critical to success.
At Individual level - Increasing individual knowledge about HIV transmission, prevention and care, as well as access to services and legal rights is important. Hwupenyu has found out that when people have a deeper understanding of what they are living with they are in a better position to navigate the system, as they feel empowered to address stigma in their personal space.
At Inter-Personal level - It is important to have messages that address HIV related stigma showing real people affected, be it videos or still pictures. Something that people can relate to eg, a pastor supporting a congregant after an HIV diagnosis.
At Organizational level - Healthcare providers have often been cited by PLWH as sources of stigma. Programs for training healthcare workers should address culturally specific stigma drivers, including personal fears of infection, prejudice towards vulnerable groups, and misconceptions or lack of knowledge about HIV transmission, prevention, treatment and universal precautions. Programs also should address how the effect of stigma, discrimination, breaches of confidentiality and negative attitudes can negatively impact patients’ lives, health, and ability to follow treatment regimens.
Biomedical and behavioral approaches to HIV prevention, such as PrEP, routine HIV testing, starting treatment soon after diagnosis (test and treat), and treatment for PLWH to viral suppression, have been successful in the UK and several countries in reducing new HIV infections and improving the life and health of PLWH.
However, HIV stigma and discrimination can greatly impact the success of these interventions. Stigma surrounding PrEP use, including assumptions about promiscuity, can negatively affect PrEP access and uptake. Assumptions and prejudice among healthcare workers may result in drug users, young adults, women and other marginalized populations not being offered either PrEP or HIV testing.
At Community level – it is time we started normalizing HIV in our communities. As Nelson Mandela stated, we need to make it considered a normal illness just like TB, like diabetes. This means GPs should be offering an HIV test to new patients who register with their clinic. At every primary care point of contact HIV should be addressed. This will normalize it and reduce stigma in the communities. PLHIV are real people—mothers, fathers, friends, brothers, sisters, sons, daughters, partners, wives, husbands, and co-workers.
At Policy level - decriminalizing the passing on of HIV, especially unknowingly, should be re-examined so that a better environment is put in place so that people are not afraid of disclosing.