Aids stigma ‘killing the nation’

2009-12-01 00:00

ACCORDING to Health Minister Aaron Motsoaledi there has been a “huge and shocking” increase in Aids-related deaths in SA.

The national death rate doubled in 11 years, 1997 to 2008. Researchers believe that this is a better indicator of the spread of HIV than Aids figures, because most Aids-related deaths are misclassified. Only the immediate cause of death, like TB, is recorded on death certificates, while the underlying cause, Aids, is not.

Closer to home, in July, a Hilton church held a “VCT Day” (voluntary counselling and testing) that offered free, confidential HIV testing with pre- and post-test counselling. Despite being advertised widely, no one turned up to be tested. Not a single person.

Although there may appear to be no link between the national Aids- related death rate and a local day of “no-shows” for HIV testing, it’s very likely that a prevalent phenomenon plays a role in both. Medical Research Council (MRC) researchers claim that doctors misclassify death certificates because “they may seek to conceal HIV infection to spare stigmatisation of relatives …”

A 2007 research project on stigma done by local NPOs, Cindi (Children in Distress) and Sinani, backed this up*. It indicated that stigmatisation creates reluctance to go for HIV testing and fear of disclosing one’s HIV status. Both are common in South African communities. Because of the Aids stigma, many people would rather not know their HIV status, which leaves them unable to protect themselves and others from the virus. Research shows that stigma may also be one of the greatest barriers not only to preventing further infections, but also to proper care and support of people who are HIV-positive or living with Aids.

Cindi and Sinani conducted the research project in three different communities: rural, semi-rural and urban. It showed that the experience of stigma among adults was worst in the rural community. However, all communities had experienced or witnessed stigma attached to adults showing visible signs of illness like weight loss or those taking regular treatment. Participants reported negative comments, gossip, insults, teasing and expressions of disgust.

All the children who participated had experienced stigma, directly or indirectly. It was most commonly expressed to children who had lost a parent to Aids, those who were sick or taking regular medication. Their most common experience was negative comments, including insults, teasing and name calling by other children at school.

It has been suggested that the Aids stigma is created by fear, social judgment, misinformation and lack of information about HIV and Aids, and poor educational background.

Cindi found that one of the major causes was lack of education around HIV, its nature and how it is transmitted. This was expressed by participants from all sectors and much of this seemed “to be rooted in a fear of being infected”. Fear about one’s own, unknown status, also seemed to make people judge and stigmatise others. The association of HIV with promiscuous behaviour also contributed to the stigma. Some participants said that some people say that the virus was “a punishment from God for bad behaviour”.

Those working in the field seem to agree that the way to break the stigma is to “normalise HIV and Aids”. The keys to this are communication and education. Jim Newton, one of the founders and executive directors of the Edzimkulu Aids Project in Ndawana said: “Stigma is the key to fighting HIV/Aids”. The Memeza Africa choir from Soweto works with the organisation on Aids outreach and its co-director, Jimmy Mulovhedzi, said: “We are paralysed by stigma. The silence is killing our nation.”

According to Debbie Harrison, director of Lifeline, the general public holds the key to breaking the stigma associated with HIV and Aids. “It is us, those of us who assume we are ‘the walking well’ who create the stigma. Judgmental and condemning attitudes create the opportunity for stigma to creep in. In particular, adults can be very condemning of young people. However, they forget that their own generation indulged in risky behaviour too, but back then they had room to make mistakes because nothing was incurable.

“Statistics show that we don’t have a single population group that is not in trouble. Take the white middle class who may assume they are ‘safe’. The infection rate is about 2,6%, which is much higher than the 0,6% for the comparable sector in Australia.

“We need to face the issue of HIV/Aids head on to break the stigma. We need leaders who will set an example of responsible and accepting behaviour. We need heroes who will stand up and be counted [see box].”

* Reduction and Management of Stigma Towards Children Affected by HIV and Aids, Cindi, 2007

Standing up to be counted

ONE group of people that has stood up to be counted is the forecourt staff of Hayfields Service Centre on New England Road. Most of the 30 staff members have been tested and wear shirts with the words “I have tested and know my status” on the back. Staff keep their status confidential, but their employer offers comprehensive support, including counselling, and access to ongoing testing and treatment.

The programme was inspired by the owner, Dr Keith Wimble, whom staff describe as “passionate about helping people, particularly around HIV and Aids”. Forecourt attendants Sbonelo Zondi and Benedict Makathini said they are proud to know their status and to wear their shirts.

“Some people laugh and mock me, but I don’t care. It is important to know your status,” Makathini said. “Some people don’t believe that I have tested, while others ask me where they can go to be tested,” Zondi said.

Engen Petroleum Ltd has extended this Aids awareness and testing programme to all its 120 service stations in the province. Staff attended workshops run by The Valley Trust’s Centre for Health Promotion and most have been tested. The Trust provides ongoing support and testing.

Engen corporate social responsibility manager in KwaZulu-Natal Caroline Ligwa said almost 300 petrol attendants attended the programme and 72 had been tested. Those who tested positive were referred for further help, while those who proved negative were counselled and motivated to stay that way.

“We are in talks with The Valley Trust to do site visits with a mobile clinic to all the service stations where employees, especially those who tested positive, can have an opportunity to discuss any other issues they might have and get information and support.

“This province has been hardest hit by the Aids pandemic, so Engen made it a priority to get involved with HIV and Aids initiatives as part of our corporate social investment focus. We have been involved with other initiatives too, but decided that charity should begin at home by educating our employees as they are part of the community and are affected or infected by HIV and Aids,” she said.

What is stigma?

STIGMA falls into two categories: enacted and felt stigma. Enacted stigma refers to real experience of discrimination, such as teasing, gossip, neglect, isolation or physical abuse. Felt stigma is real or imagined fear of societal attitudes and potential discrimination because of an undesirable attribute, disease (such as HIV/Aids), or association with a particular group or behaviour (eg homosexuality and promiscuity). (Cindi, 2007)

Who's to blame?

THE medical journal Lancet largely blames authorities for the phenomenon of Aids stigma and denialism: “Social stigma associated with HIV/Aids, tacitly perpetuated by the government’s reluctance to bring the crisis into the open and face it head on, prevents many from speaking out about the causes of illness and deaths of loved ones and leads doctors to record uncontroversial diagnoses on death certificates … The South African government needs to stop being defensive and show backbone and courage to acknowledge and seriously tackle the HIV/Aids crisis of its people.” (February 2005)

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