Stigma stands stubborn after 40 years of HIV

“After I delivered the baby at the hospital, no one wanted to touch her, I was the one who was doing everything by myself even though there were older people at the house.

“I realised that people were stigmatising me. They helped me with nothing and I even ended up giving up a lot!

“One day when I got up, I took my son and the younger one and then closed myself in the room. “I had many thoughts and I wanted to take all the medications in the house and drink them.”

The account is from one of the 1,645 participants surveyed in the national HIV Stigma 2.0 report, the country’s second attempt to track the social and internal struggles of those living with the disease.

The first stigma report was developed in 2013 and launched in 2014, documenting the plight of People Living with HIV/AIDS (PLWHA) in terms of the stigma and discrimination they faced in the country.

At the time, HIV was about 29 years, as the first case was confirmed in Selebi Phikwe in 1985. From those early, dark days, the disease has been attacked through condoms, educational crusades, male circumcision campaigns, Anti-Retroviral therapy (ARV), Prevention of Mother to Child Transmission (PMTCT) treatment and others.

The result has been that Botswana is one of just three countries in the world to have achieved the UNAIDS’ 95-95-95 target. The targets require all nations, by 2025, to ensure that 95% of all people living with HIV know their status, 95% of those who are diagnosed are on ARVs, and 95% of those who are on ARVs have viral load suppression.

The latest stigma report, however shows that there’s only so far the treatments and achievements can go.

While physically, more people are living well and longer, emotionally and psychologically, they are still suffering the stigma faced decades ago at the dawn of the disease in the country.

“It is not easy to take them at school especially when you are boarding,” a Tsabong focus group member said in the latest report.

“Mostly when you are taking them you will see others grouping themselves in little meetings talking about me.

“So I feel much better drinking them outside like at home where I know that I am free and welcomed.”

Stigma itself has evolved over the years, as the treatments for the disease have become available. When HIV first broke out, the lack of treatments meant that as patients became more ill, their illness was more visible, leading to greater stigmatisation and discrimination.

With PMTCT and ARVs, less people are developing full-blow AIDS and fewer still are “visibly” infected, while laws have tightened to prohibit discrimination on the basis of HIV status.

Despite all these, stigma has evolved to becoming a nebulous prejudice held by some members of society against PLWHA. Rather than disappear as treatments have become more available and as more people live longer with the disease, today’s stigma is now normalised in some places.

In the latest stigma report, researchers found that of the 1,645 respondents, about six percent of respondents had experienced at least either verbal abuse, blackmail, physical abuse, job discrimination or some form of abuse or discrimination against their partner, spouse or children because of the respondent’s HIV status.

Verbal abuse is the most common form of abuse experienced by PLWHA compared to other forms of abuse. Researchers found stigma in the form of blackmail, physical harassment, refused employment, job description changed or denied promotion as well as partner or children experiencing abuse because of the respondents’ HIV status.

“Respondents reported various forms of stigma for HIV-related care in health facilities such as being advised against having a child, being advised to terminate pregnancy, being pressured or incentivised for sterilisation, or being coerced to use a specific method of contraception to access treatment, being pressured to use a certain birth method or a particular infant feeding practice,” the report notes.

The revelations are alarming 40 years into the pandemic, but the numbers are also down on the 2014 report. The previous 2014 Botswana study showed that 8% of respondents were refused employment or work opportunities because of their HIV status. Almost 10% were denied access to reproductive health services because of their HIV positive status. About 10% of the respondents reported that their rights were violated but only 28% of them attempted legal redress.

The evolution of stigma, however, means that where this prejudice occurs, it has more devastating effects on PLWHAs. For instance, where stigma decades ago meant fewer people would disclose their status, now it is one of the primary drivers of PLWHAs dropping their life-prolonging medication.

“I experienced it when I was still in boarding school, as a student who is living with HIV.

“It was difficult that sometimes I ended up wanting to leave my medications because of how sometimes some students will discriminate against me.

“Every time I had to take my pills, they would have to start saying negative things that I am living with HIV, which is why it took me a long time to accept myself because they would say things that made me not want to take them,” a 30-year focus group discussant from Omaweneno said in the report.

The evolution of stigma is most profoundly seen in the growing acknowledgement of internal stigmatisation and self-blame that many PLWHAs are more willing to express. While other indicators of stigma such as verbal assaults and job discrimination, declined between 2014 and 2023, those involve internalised stigma have remained stubbornly high over the years.

Actions related to internalised stigma include self-isolation from family, friends, avoiding health care, seeking jobs and other means of support, negative feelings about one’s HIV status such as shame and guilt, feeling that respondent’s HIV status has had a negative impact on their ability to meet needs such as secure relationships, love, self-respect, and respect for others.

The 2014 stigma report found that about 24% of respondents harboured feelings of self-blame and 18% felt guilty about their HIV positive status. By comparison, for 2023, about 29% of respondents reported negative feelings about their HIV status such as shame and guilt. Just over 21% felt that their positive HIV status has had a negative impact on their ability to meet needs such as secure relationships, love, self-respect, and respect for others.

The trends in internalised stigma are linked to PLWHA’s willingness to disclose their HIV status or acknowledge their status. HIV status, 40 years after the disease was first confirmed in the country, is still a highly touchy subject because of stigma.

The discrimination and prejudice is particularly worse for minorities such as commercial sex workers, Men who have Sex with Men (MSM), the transgender community and others.

“Here in Botswana, there is no secret, even when you go to the hospital, you will hear them saying ‘who is here for refill’! even the security guard will be busy shouting....’Refill’! and imagine.... people will be just looking at you, imagine if there are relatives or customers that you don’t want them to know about your status,” the latest stigma report quoted a female sex worker from Kazungula as saying.

According to the report, the MSM population experienced relatively higher levels of stigma and discrimination compared to other key populations with half of MSM reporting that they had experienced discriminatory remarks and gossip by family members, compared to about 13% of commercial sex workers and about five percent of lesbians.

“Close to a fifth of gay /MSM were afraid to seek health services because of their gender identity, followed by 7.2% of commercial sex workers and 15.4% of injecting drug users,” the report noted.

“Verbal harassment was highest among MSM and commercial sex workers than among other key populations.”

The report found that 20% of interviewed transgender people reported that they were excluded from family activities, while 20% also stated that their family members made discriminatory remarks or gossiped about them. Twenty percent also reported that they were verbally abused.

Amongst MSM, nearly 28% reported that they experienced some HIV-related stigma and discrimination, especially being excluded from family activities, family members making discriminatory remarks or gossiping about them, feeling afraid to seek health services and avoiding seeking health services.

Activists who spoke to Mmegi this week, say the latest stigma report does not accurately reflect the situation on the ground. Stigma, they say, has not declined in the period between the two reports and is actually on the rise.

“The response from people who actually participated in the study is that stigma is still very high but the report says it is declining, which is not true,” said Bino Segadimo, an HIV activist.

“It’s complete lies that stigma is on the decline. They got the information from the people and the people said stigma is still high, but they wrote something else.”

She added that the root cause of stigma and discrimination is the fear of getting infected by those who are positive. The cure to that, Segadimo said, is to promote the Undetectable=Untransmittable (U=U) campaign. U=U is a message used in HIV campaigns which means that if someone has an undetectable viral load, they cannot sexually transmit HIV to others

Kennedy Mupeli, a local long-term HIV activist and trainer, also expressed concerns about the stigma study, noting that it had ignored the U=U principle.

“This exclusion is critical as U=U is a scientifically supported concept that has been proven to reduce HIV-related stigma by demonstrating that individuals with HIV who maintain an undetectable viral load through antiretroviral therapy cannot sexually transmit the virus to an HIV-negative partner,” he told Mmegi.

Mupeli continued: “The omission of U=U from our survey might have led to skewed results by not fully capturing the depth of stigma in the era of effective HIV treatment.

“For instance, the survey could reflect an outdated perception of HIV as highly transmissible, thus perpetuating fear and discrimination against people living with HIV who are undetectable and non-infectious.

“Moreover, participants' responses to stigma-related questions could be significantly influenced by their awareness and acceptance of U=U, which the survey fails to account for.”

Mupeli said implementing educational campaigns about U=U prior to survey distribution could help inform the community and ensure participants are better equipped to answer questions accurately, reflecting current attitudes and knowledge levels.

“Incorporating U=U into stigma assessment tools is crucial for providing an accurate representation of HIV-related stigma and for effectively combating it in Botswana.

“By adjusting the survey framework to include critical elements like U=U, stakeholders can gain a clearer insight into the challenges and progress in reducing stigma, ultimately improving public perceptions and enhancing the quality of life for individuals living with HIV,” he said.

For authorities involved in the report, the recommendations revolve around drafting and enacting legislation specifically targeting the eradication of stigma and discrimination against key populations and PLWHA.

Authorities also want to see clear definitions and provisions that explicitly prohibit discrimination based on HIV status, sexual orientation, gender identity, and other relevant factors.

After four decades, it appears laws are still needed to compel some in society to treat their fellow citizens respectfully. For those living with the disease, the battle is less about the virus, and more about the perceptions and discrimination by some in society.