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Wall of silence blocks hopes of Aids-free world

As the fight against the disease reaches a make-or-break point, Himaya Quasem looks at how lingering prejudice may thwart progress.

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Published on December 1st, 2011
 

It has been 30 years since the spectre of Aids first loomed large in the public consciousness.

Now, with the death toll at more than 25 million and counting, there are glimmers of hope that the spread of the disease could be stopped in its tracks.

Thanks to decades of tireless awareness-raising and scientific research, there is a real chance that there could be no new cases of HIV -  the virus that causes Aids - by 2020, United Nations Secretary General Ban Ki Moon said at a conference this summer.

He added that if world leaders and agencies unite “as never before”, the goal of relegating Aids to the history books could be met.

But there is one major stumbling block to this vision of an Aids-free world.

That is, the deep-rooted fear which still surrounds this most misunderstood of illnesses. This fear has turned many sufferers into social pariahs and deterred others from coming forward to be treated, which further fuels the spread of the disease.

Today, on World Aids day, as we take stock of how far humanity has come in the fight against the disease, one thing seems clear: Aids is capable of bringing out the best and the worst in people.

From the playgrounds of rural Scotland to the lime-green fields of Northern Uganda, I have interviewed sufferers who say the stigma associated with being HIV-positive is one of the hardest things to bear.

Five years ago, I spoke to Sarah, a 20-year-old woman in Scotland who contracted the virus in the womb after her mother received a contaminated blood transfusion.

Born in the mid-1980s, Sarah (not her real name) was one of the first children in Scotland to be diagnosed HIV-positive and was bullied mercilessly at school.

“I've had to put up with being called 'dirty' and a 'junkie'. And most of the time my family and I were treated like lepers,” she told me.

She added that her schoolmates’ parents, presumably ignorant of the fact that HIV is transmitted via unprotected sex and direct blood contact, also told their children to avoid standing near her when she coughed or using the same toilet seat as her.

“The truth is that I was more likely to become hospitalised if one of them coughed on me,” she said, referring to the fact that HIV suffers are often left with weak immune systems.

Half a world away in war-scarred Northern Uganda, I met Florence, a 34-year-old mother of four.

Even though she was receiving anti-retroviral medication when I met her last year, Florence (not her real name) was visibly very weaker and worsening by the day.

The drugs, which have helped many sufferers add decades to their lives, were not working effectively on her, largely because she had received them too late.

The reason for the delay? Her husband, who started to fall ill repeatedly after being unfaithful to her, had refused to get an HIV test.

“Even when he was very weak and dying, he did not want to go for testing and he did not want me to go either,” she said. “He feared being told he was HIV-positive.”

In a male-dominated society, it was difficult for Florence to go against her husband’s wishes or even refuse to have unprotected sex with him.

It was only after he died that Florence was free to go for the test. Not only did she discover that she had the disease but she also was told her CD4 count, which measured the health of her body’s immune system, was very low. This meant the HIV virus was now at an advanced stage.

“Now I just worry for my children,” she said. “Who will look after them? How will they go to school? Where will they live?”

Florence’s predicament is not unique. Countless others like her have been infected because their partners refused to go for the HIV test for fear of what others would say.

Only half of those with the virus know their status. And there is still great fear attached to taking the test, The Guardian newspaper reported in May.

This conspiracy of silence fuels new cases of HIV, thwarting efforts to stop the virus’s spread.

The good news is that anti-retroviral drugs and therapy, which significantly prolong the lives of people who are HIV-positive and reduce the rate of mother-to-child transmission, are available and reaching more and more sufferers.

According to this year’s UNAIDs progress report, increased access to HIV services has resulted in a 15 per cent reduction of new infections over the past decade and a 22 per cent decline in Aids-related deaths in the last five years.

But in this tough economic climate, with international donor funding for HIV/Aids programmes dropping from US$8.7 billion (S$11.15 billion) to US$7.6 billion last year, progress on that front could be jeopardised.

It is clear that we cannot rely on scientific breakthroughs alone or take for granted the steady stream of funding which has supported it.

Instead, individuals, communities and governments need to engage in practices that help lift the cloud of ignorance and fear that still surround this preventable disease. Otherwise, too many victims will continue to suffer in silence.

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