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Thursday, December 5, 2013
- HIV-related stigma and discrimination remain a key concern in South Africa, despite the multitude of HIV awareness campaigns that have been launched by government and civil society organisations throughout the years, health experts say.
Stigma continues to be “a seriously neglected issue”, particularly in sub-Saharan countries, including South Africa, regardless of the fact that it has detrimental effects on public health and human rights, according to a 2007 UNAIDS report.
Fifty-year-old Gertrude* from Hopefield, a small village on South Africa’s West Coast, experiences the effects of stigma and discrimination every day: “A lot of people in my community shun me. They swear at me and call me names because I’m HIV-positive. But I’m used to it now. I just ignore it.”
When Gertrude found out she was HIV-positive several years ago, she disclosed her status to her immediate family members, who she says are supportive of her. But somehow, word of her HIV status got out to the community, and since then Gertrude’s life has been lonely and difficult.
“Because of my illness, I can’t work. I don’t have enough strength to keep a job,” says Gertrude.
She has tried to apply for a disability grant but, being semi-literate, has been struggling to fill out the forms, and the application procedure stalled.
Only once a week, when Gertrude attends the organisation’s support group, does she feel at ease. “Being with other people with HIV helps because we talk a lot about our problems. It makes me find comfort,” she explains.
Gertrude is just one case in point. Recently published research by the Centre for Social Science Research (CSSR) at the University of Cape Town confirms that stigma continues to inhibit people like Gertrude from accessing HIV counselling and testing services, including programmes to prevent mother-to child-transmission, HIV treatment and care.
CSSR researcher Brendan Maughan-Brown, who surveyed 1,074 young Capetonians in 2003 and 2006, found that stigma has increased despite public sector campaigns and improved treatment and care services.
“These findings indicate an imperative for renewed efforts to reduce stigma, perhaps through interventions to weaken the association between HIV/AIDS and death, to reduce fear of HIV/AIDS and to recast HIV as a chronic manageable disease,” Maughan-Brown suggests.
Like Gertrude, Janie*, another member of the HIV/AIDS Initiative’s support group, is keenly aware of the stigma and discrimination HIV-positive people face in her community. The 35-year-old has disclosed her status only to her husband and says she is afraid others will find out.
“I don’t want anybody to know that I am HIV-positive because of the abuse. I wish people’s attitude towards us would change,” she says. Janie, who is a mother of three and lives off a disability grant, says she cannot afford to pay her children’s school fees and buy them school uniforms. Her husband is also unemployed. At the HIV/AIDS Initiative’s centre, she has joined a beading group, but the little money she makes from selling the handcrafts hardly buys a loaf of bread a day.
“It’s good mainly to keep me busy and not make me think of the illness all the time,” Janie explains.
The staff of the HIV/AIDS Initiative, which works with communities throughout the entire Saldanha Bay municipality, confirm that stigma and discrimination continue to prevent most HIV-positive people in the region from disclosing their status – and even from getting tested.
“The communities here are very small. Everybody knows everybody, so news travels fast,” says Elsie Louw, a home-based carer who works for the HIV/AIDS Initiative. “People are not ready to disclose because of the stigma. They want to keep it a secret.”
Most patients are even too afraid to disclose their status to the home-based carers, which makes it difficult for them to give patients the treatment and care they need, says Louw: “We have lots of patients with tuberculosis, and we encourage them to go for (HIV) testing to the clinic, but very few end up going.”
As a result, most HIV-positive people only seek help when they are already very ill. “People would stay healthier for longer if they knew their status and would disclose,” reckons Louw who has only one patient out of more than 50 who disclosed her status to her.
“I can help this woman more than the others. I can get her better access to medication and help her to get transport to the support group. She now has somebody to talk to if she needs anything.”
Merle van Oordt, project manager of the HIV/AIDS Initiative, which also offers voluntary counselling and testing, confirms that the uptake of HIV testing has been slow. Despite the organisation’s efforts to educate communities about HIV and the importance of knowing one’s status, fear of discrimination is stronger than the reasoning that HIV testing does prolong – and protect – lives.
“Only very few people come for testing because stigma is very high. Most people here don’t know their status. I would guess about 70 percent don’t get tested,” she says. “Only when they are very sick, they come. We had a lot of deceased people this year.”
According to van Oordt, most HIV-positive people find out about their status only when they have repeated incidences of TB, the main opportunistic infection.
“When they finally come to us, their CD4 count (which measures the strength of a person’s immune system) is very low. Their system is too weak for them to start ARV (antiretroviral) treatment. We have to treat the opportunistic infection first and can only start ARVs later. But for many that’s too late. That’s our dilemma,” she says.
Denial is another major problem in the area. “We still get people who don’t know what HIV is and who believe it doesn’t affect them. They are in denial and they don’t want to know,” van Oordt further explains. “It’s a very bleak picture.”
To tackle this challenge, the HIV/AIDS Initiative recently teamed up with the TB/HIV Care Association in Cape Town to train its home-based caregivers in ARV management – in the hope that if patients can be treated without being seen queuing regularly at the clinic or hospital, more people will be willing to get tested and seek help.
If everything goes according to plan, health workers at Vredenburg hospital will begin referring stable ARV patients to be supported by home-based carers. This means they will initially have to see a doctor to prescribe ARVs, but a carer will take the medication to the patient’s home once they have shown to adhere to the treatment. This will lessen the hospital staff’s workload and, at the same time, give patients more personalised care, the organisations hope.
“We want to put more and more people onto ARVs by building trust relationships with carers,” explains TB/HIV Care Association nurse mentor Francis Prinloo, who trains the HIV/AIDS Initiative’s home-based carers.
“We also hope to have better adherence to ARVs because home-based carers see their patients often and can pick up opportunistic infections immediately.”
But Prinsloo realises that it will take time for people to build enough trust to overcome fear of discrimination: “We have big problems to deal with.”
*Not her real name