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‘Enough said about AIDS; focus on stigma’

  • Tale of an HIV-positive factory worker who, more than the epidemic, battles fears of stigma

Lekhetho Ntsukunyane

“I’m a living example AIDS is not a deadly disease; what kills people living with HIV is the unbearable stigma that comes with it,” says the 31-year old ’Mapule Leola*, who has lived with the pandemic for more than ten years.

Leola is employed in one of the Maputsoe-based textile factories and shares her story exclusively with MNN Centre for Investigative Journalism under a pseudonym “to protect my children”.

After discovering she was HIV positive in 2008, Leola thought her lifespan had immediately been cut shot.

“Because I was frustrated, I frantically engaged in all sorts of misdeeds and even blamed God. The first thing that came into my mind was to commit suicide.

“I kept asking myself; what will people say about me? I have heard people saying nasty things about people living with HIV. They use phrases like ‘O hatile cable’, which are meant to humiliate people living with HIV”.

When interpreted, ‘O hatile cable’ means he or she has stepped on a lethal live electric cable. It is a Sesotho slang renowned among the youth and young adults, used to name and shame people living with HIV and AIDS.

Leola doesn’t want her real names published as she fears for her two young daughters. 

Born in 2009 and 2013, Leola’s girls have successfully tested HIV negative, thanks to the Preventing of Mother-to-Child Transmission (PMTCT) treatment programme that is being funded by the United States President’s Emergency Plan for AIDS Relief (PEPFAR).

“I have a ten-year old daughter and her six-year old younger sister. I have never told them I’m (HIV) positive. It will shock them to hear from the media that their mother has Aids,” Leola says.

She adds she independently raised her daughters since their father, “my husband-to-be”, went AWOL in 2013.

Leola firmly says she doesn’t want her daughters to know her status, “because it will affect their way of life. They will begin to think they have HIV as well. It will even affect their studies and they will fail at school. I don’t want them to go through what I went through, living with the stigma.”

She says she vividly remembers in 2008 when she walked out of the testing room, “it was like it was written all over my face for everyone to see that I’m HIV positive. I could barely walk”.

She started taking alcohol, going out to night clubs and wanted to experiment all sorts of harmful drugs “just to sleep my consciousness away and turn a blind eye on the existing reality. I saw death knocking on my door.”

Her boyfriend left to find job in South Africa in 2013 after the birth of their second-born girl and has since never came back.

“We were supposed to get married soon. He knew I was HIV positive and he never had a problem with that, at least at first. He supported me together with our first child. He had tested negative himself during my pregnancy with the first child”.

However, Leola has “a bad feeling” the boyfriend developed change of heart and disappeared “when it eventually sank into his mind that he was going to live with an HIV patient for the rest of his life, should we get married”.

Ten years since testing positive in 2008, Leola still looks fresh and healthy, thanks to her endurance. “God is the pillar of my strength,” she says.

Despite the ever-meagre salaries associated with the Lesotho’s textile industry, Leola manages to raise her two daughters and sends them to government schools. The family rents a single-room flat at M350 per month in Maputsoe.

Leola says she now earns around M1, 600 a month, having been working in the firms since 2010.

She is one among thousands of the textile factory workers living with HIV and Aids. The industry employs over 40,000 Basotho – predominantly women.

In fact, according to a study by the now-defunct Apparel Lesotho Alliance to Fight AIDS (ALAFA), a total of 14, 000 workers in the country’s textile industry had tested HIV positive in 2014.

Launched in May 2006, ALAFA was a public-private partnership programme providing prevention and treatment for the 40,000-strong workers in the Lesotho’s textile industry.

During 30-minute breaks at the factories, ALAFA freely provided a range of integrated health services including prevention, testing and treatment of HIV, TB and sexually transmitted diseases, as well as advice and education of family planning and parent to child transmission.

The programme, however, closed shop in December 2014 following administrative issues that rifted stakeholders.

The 2014 study also showed out of the total 14,000 workers positive with HIV, 8000 received treatment with ALAFA while the rest 6, 000 defaulted for a range of reasons.

Leola admits benefiting from the programme between 2010 and 2014, saying: “It shaped my life. Before I got employed at the firms and introduced to ALAFA, I never knew there were so many people who are HIV positive like myself but still living a good life out there. I attended treatment and counselling sessions with many others and began to realise that one can truly live a perfect life with HIV as long as we don’t default on treatment and medication”.

According to prominent textile trade unionist, Bahlakoana Lebakae, religion and culture are some of the excuses for HIV patients to default treatment.

“Some of the defaulters are members of churches that do not believe in the existence of HIV and AIDS. Others have resorted to traditional healers for treatment…,” Lebakae says.

Lebakae says the high rate of HIV infections at the factories is mostly attributed to prostitution.

“Young women, from the age of 18, come in large numbers from all corners of Lesotho to find jobs at the factories in Maseru and Maputsoe. They don’t immediately get the jobs and in the meantime, they engage in sex work at night. Even after they get the jobs at the factories, they continue with the practice of sex work because salaries are too little to provide for their living”.

The trade unionist believes the rate of HIV treatment defaulters has increased tremendously from 6,000 that was recorded in 2014 following the ALAFA closure.

“The workers used to be tested conveniently and received counselling and treatment freely at the doorstep of their workplaces. Now, they have to pay for some of these services, and because they earn meagre wages, they cannot afford the services. They end up defaulting treatment,” Lebakae argues.

But for Leola, the stigma that is associated with HIV and AIDS is the major reason why people shy away from treatment.

“A lot of people, even today, don’t want to test for HIV because of the associated stigma. Even for those that have already tested positive they default treatment because of peer pressure. Maybe it’s high time we all focus our attention on the stigma, we have fought AIDS long enough,” she concludes.

Earlier this month, January 16, 2019, the government of Lesotho, PEPFAR, the US Centres for Disease Control and Prevention and ICAP announced the final results of the Lesotho Population-based HIV Impact Assessment (LePHIA) survey.

The report shows “remarkable strides” that the country is making towards control of the epidemic.

It shows an impressive 81 percent of the population has tested and now aware of their HIV status, and adds the annual HIV incidence (new infections per year) today stands at 1.1 percent.

The Health Minister Nkaku Kabi has said the report provides a breadth and depth of data “that will greatly inform our approach to controlling Lesotho’s HIV epidemic”.

Also funded by PEPFAR, LePHIA was conducted from November 2016 to May 2017 and included 16,000 people aged from zero to 59 years across 10,000 randomly selected households.

It is the first national survey to provide comprehensive information on important HIV and AIDS indicators at national and regional levels and measure progress towards the globally recognised UNAIDS 90-90-90 targets set to be achieved by 2020.

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