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Sunday 26 February 2006
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Stigma and HIV/AIDS: lethal bedfellows

Dear Diary,

PlusNews, the UN's HIV/AIDS news service, recently launched what is probably the most comprehensive web special on the progress of anti-AIDS drug treatment in Africa.

Aptly named "The Treatment Era", it highlights how providing treatment for Africa's HIV-positive citizens is, for the first time, an achievable goal due to falling drug prices, new sources of international funding and growing political commitment.

But, before we celebrate antiretrovirals as the atomic bomb of AIDS warfare, my personal experience with the virus indicates that the availability of drugs is only part of the global battle to prolong lives.

Despite public education campaigns and advocacy to make HIV/AIDS more visible and less shameful, stigma persists, hampering both testing and timely treatment efforts.

Research suggests that most of South Africa's estimated five million HIV-positive people have never been tested for the virus, and many do not seek treatment until the disease has advanced so far that antiretroviral drugs are mostly ineffective.

All thanks to stigma.

Acting as an unseen ally of the virus in achieving its goal of eradicating mankind, stigma is often inflicted on HIV-positive individuals and their families.

In most cases it forces people to keep the disease secret, while others have been driven to choose death above the available medicines.

This was frighteningly evident during a December trip to my old home community of Wentworth, about 11 km southwest of the Durban city centre.

I sat in utter disbelief as I was told of the secret death and burial of a good friend, due to his family's fear of stigma and discrimination.

According to the narrator, Leon's parents, who were teachers - as he had been - kept him at home and watched him slowly and painfully waste away.

My head throbbed as I struggled to decide which was worse: the fact that Leon could so foolishly allow himself to die that way, despite his government-subsidised medical benefits; or that, although he had been an educator, he was just as ignorant about HIV and AIDS.

Then again, perhaps ignorance was not to blame, and AIDS-related stigma in Wentworth has become so unbearable that it extends beyond disclosure to diminish the hope of a prolonged and healthy life offered by therapy.

I've heard stories of the increasing number of AIDS-related deaths in the community told with such disgust that even I find it difficult not to wonder what filth and promiscuity my HIV status is attributed when my back is turned.

From the stinging way in which obituaries are passed on, its no surprise that the gossips themselves are sometimes convinced that death is the best release.

And those few who are aware of their status keep it secret, even from family members, because of persistent misconceptions about how HIV is spread.

In private I often find myself weighing the burden I've so selfishly forced my family to endure as a result of my public disclosure.

But the stigma and discrimination endured by my family and me is really a small price to pay for my prolonged life and the invaluable time I have been allowed by antiretrovirals.

Former South African President Nelson Mandela, in his most recent public attempt to tackle stigma after the AIDS-related death of his son, said: "Let us give publicity to HIV/AIDS, and not hide it, because the only way to make it appear like a normal illness, like TB; like cancer; is always to come out and say somebody has died because of HIV/AIDS, and people will stop regarding it as something extraordinary."

Although Africa's advancement in making AIDS drugs increasingly accessible is certainly admirable, the painstaking lengths to which activists and non-governmental organisations have gone to bring about this "Treatment Era" could all come to naught as long as the social stigma inflicted on infected individuals and their families persists.


Forever Positive

Hayden Horner


Previous Entry :: All Diary Entries :: Next Entry
Diary Entries
HIV/AIDS Coping Mechanisms: "What would a mayfly do?"
Beyond the Borders of HIV/AIDS Treatment Strategies
HIV/AIDS Feminisation: A new wine in an old bottle
Antiretrovirals - The Wind Beneath My Wings
The Mis-education of HIV/AIDS Clinicians
HIV Prevention 101: Ignoring the Church's views on condoms
Stigma and HIV/AIDS: lethal bedfellows
In remembrance of our women and children
Maids, madams and the "terrible thing"
Internet love and inter-related HIV-prejudice
Previously eyes-wide-shut on HIV and religion
Love, lies and disclosure
Black pot and blacker kettle
Things better left unsaid on the bus
Food for thought while waiting to die
Test results not all good
Diary speaks back
The truth about disclosure

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