Stigma impedes elimination of HIV in the country

May 29, 2017

Stigma remains the single most important barrier to public action, the main reason why too many people are afraid to see a doctor to determine whether they have the disease

Uganda is committed to having an HIV free generation and is working towards realizing zero new HIV infections and zero AIDS related deaths. But one critical question still hangs unanswered. The problem of stigma and discrimination associated with HIV/AIDS and society's attitude to it is still a big question that needs an answer.

"The struggle against HIV/AIDS will never succeed without addressing stigma. Stigma can be more lethal than the virus. Stigma remains the single most important barrier to public action, the main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so," said Ms. Salome Atim, the Advocacy for Better Health (ABH) project Officer, National Forum of People Living with HIV/AIDS Networks in Uganda (NAFOPHANU), an umbrella organization for PLHIV networks in Uganda.

She made the remarks during the launch of stigma awareness week, Friday, at the NAFOPHANU offices in Mengo. She told journalists that stigma helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions.

UNAIDS defines HIV-related stigma and discrimination as  a "process of devaluation' of people either living with HIV and AIDS -Discrimination follows stigma and is the unfair and unjust treatment of an individual based on his or her real or perceived HIV status."

Stigma is fuelled by the lack of understanding of the disease, myths about how HIV is transmitted, prejudice, lack of treatment, irresponsible media reporting and insensitive utterances. Three decades since the onset of the disease, says Atim, there has been a wave of awareness about AIDS but stigma is still rampant.

Despite the good polices and focus, Uganda is failing to eliminate HIV in the country partly due to stigma and discrimination. Various reasons contribute to stigma and discrimination including limited knowledge about the transmission of the virus and belief that having HIV is shameful. Furthermore religious beliefs and moral judgments continue to render many people living with HIV powerless.

The first ever stigma index survey conducted in 2014 by NAFOPHANU reveals that 75% of People living with HIV and AIDS experience stigma at family level and  60% are aware of being gossiped about, a fact that greatly affects their self-esteem and general wellbeing.

The survey further reveals that 36% of People living with HIV and AIDS are verbally insulted, harassed, or threatened. One in five of People living with HIV and AIDS are subjected to psychological pressure or manipulation by their spouses, 21% experience sexual rejection by their spouses, 23% lost jobs because of their HIV status and 15% of People living with HIV and AIDS are assaulted based on their HIV status. Furthermore 3 out of 4 HIV positive persons whose rights were violated did not take up legal action for fear of stigma and of those who reported only 40% received legal redress.

Stigma can be external or internal. External stigma involves comments from the public, and the attitude they develop towards people living with HIV while internal or self-stigma has to do with the person living with HIV himself. Atim said that stigma and discrimination leads to isolation from family members contributing to progression of AIDS since the family unit that is supposed to support treatment adherence is nonfunctional, hence contributing to poor uptake of services.

Fearing to be gossiped about, HIV positive persons socially exclude themselves and miss-out on different life opportunities including care programs. This in turn affects their wellbeing. External stigma and rejection leads to internal stigma contributing to emotional distress, self-blame and in some other instances suicide.

Stigma and discrimination continues to occur in places of worship.  Many people living with HIV run for solace in their faith and rejection becomes catastrophic to their wellbeing, affecting sense of security of self and contributes to fear to seek for help. PLHIVs also experience assaults in domestic setting including domestic violence. Domestic violence often experienced by women drives the epidemic because the affected party fails to adhere hence much more easily transmit infection.

Rejection often leads to violence as well as non-provision of basic needs, marital rape, poor condom negotiation which all drive the epidemic. Failure to meet basic needs affects livelihoods and for some may lead to survival sex contributing to new infections. Lack of knowledge coupled with limited trust in the judicial systems continues to affect access to justice. This in turn leads to continued abuse of rights of PLHIVs.

Stigma and discrimination of persons living with HIV contributes to increased infections within the population because those infected fail to disclose to new partners, expectant mothers fail to undertake prevention of mother to child HIV transmission programs because their own spouses stigmatize them and refuse them to go for care, for fear of being seen by persons known to the family. They in turn fail to make a positive contribution towards the reduction of the epidemic. Fearing rejection, women fail to partake Elimination of Mother to Child Transmission (EMTCT) programs and those in discordant couples fail to open up. Furthermore many men and women fail to uptake treatment, suppress the virus and infection rates.

Stella Kentutsi, Executive director, NAFOPHANU, observes that when you look at both external and internal, the levels of stigma in Uganda are quite high. Basing on the external and internal stigma experienced by people living with HIV, if nothing is done urgently; we are likely to have more new infection as people will not come out since they are scared out there, she regrets.

"People are scared of going to get services, meaning we are likely to have more AIDS related deaths. If talk of getting to zero, we should focus more on how we should get away with the prevalent stigma so that the new infections do not happen and we do not have anybody dying of AIDS related death," Kentutsi says.

Atim says that there is therefore need to revamp sensitization among adolescents and young people as well as the general population to bridge the knowledge gaps and mitigate stigma and discrimination of people living with HIV and AIDS.

If the recently approved UNAIDS and WHO targets of the 90X90X90 are implemented, we shall come close to the goal of Zero New HIV infection and Zero HIV related deaths. It prescribes that at least 90 percent of all people living with HIV should be tested, 90 percent of all infected people get on treatment, and 90 percent of all those on treatment achieve viral load suppression (undetectable) levels. If these goals are achieved by 2020, the epidemic would be under control by 2030.

This calls on the government and the different stake holders to revamp and intensify sensitization programs to bridge the knowledge gap in order to eliminate new infections. Where need be, enforcement of none- discriminatory laws as enshrined in the constitution of Uganda and the employment punitive measures towards individuals and organizations abusing the rights of persons living with HIV.

Thus all players should work towards reducing stigma and discrimination of people living with HIV in order to realize an HIV free generation. It is estimated that about 1.5million people in Uganda are living with HIV/AIDS and need care, treatment and support.

It is also estimated that 28,000 people die of HIV/AIDS related death every year. Furthermore 83,000 new infections were registered in 2015, meaning that every single day 227 persons are infected majority of who are young girls and young women (WHO Report 2015). The HIV prevalence rate stands at 7.3% but with variations between regions. "If nothing is done to address stigma, we are fighting a lost battle," Atim says.

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