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The author of the acclaimed book Three-Letter Plague, Johnny Steinberg, explores the scarcity of AIDS memoirs and creative writing on HIV in SA, in an article titled ‘An Eerie Silence’.
He traces the long resistance to an honest reflection on HIV/AIDS and the denial and shame that has curbed this dialogue.
Steinberg writes the “stifling political correctness in the mainstream media” has not stamped out harsh,collloquial references to the diease.
“The commentary about HIV that has saturated colloquial language on the South African street, too, is all about sexual excess and greed,” he writes, having raised the problems with how these themes have been linked to AIDS.
“References to three letters are implicitly understood to mean HIV. If it is said, for instance, that a man drives a BMW Z3, it means that he is HIV-positive and implies that he contracted the virus by living too fast.
“A person with HIV is also said to have won the lottery: If you play enough times, you will get it — a cruel and nasty commentary on the fate of those who have serial lovers.”
Steinberg celebrates Phaswane Mpe’s novel Welcome to Our Hillbrow for chiselling through the silence on AIDS with “great power and originality”.
Mpe broke new ground, writes Steinberg, referring to other novelists who have picked up his legacy.
“When this emerging literature is old enough to be named and canonized, I think it will be said that Mpe was the forerunner, the one who started to give voice to what had once been mute.
“And yet, Mpe’s story, too, is suffused with a difficult silence.
“Three years after his novel was published, Mpe died at age 34 of an illness that was never disclosed.”
THE good news that HIV infection rates in infants in South Africa have been halved from 8% to 3,5% and that access to medical male circumcision is rapidly expanding was released this week at the 5th SA AIDS Conference in Durban (as reported in The Times today).
And equally encouraging are the breakthroughs in HIV prevention research – in trials using ARVs for prevention – that have been reported in science journals over the last year.
These positive results were a major focus at the four-day conference (more detail in the Sunday Times).
The latest scientific results influenced debates on prevention and treatment between scientists and doctors at this conference and will impact on the drafting of South Africa’s new National Strategic Plan, due to be finalised by the end of this year.
The NSP 2012-2016 is expected to have realistic, measurable targets that are more achievable than the aspirational goals of the 2006-2011 NSP (which had targets like halving the rate of new infections by 2011).
The drafting of the plan – and each province is expected to submit a clear operational plan – will take place at the same time as the restructuring of SANAC, the SA National AIDS Council.
These steps – a focused new NSP, provincial plans for HIV/AIDS, a restructured SANAC, the contributions of experienced activists – combined with the tireless leadership of the Health Minister Dr Aaron Motsoaledi and his team could help to reverse the HIV epidemic in South Africa.
This is the last day of the 5th SA AIDS Conference and maybe it is possible that by the next conference in Durban in 2013, delegates will be reporting that South Africa has succeeded in turning the tide against the epidemic.
“REMAINING ignorant of your HIV status is not a human right,” Professor Lucy Allais, director of the Wits Centre for Ethics, said today at a discussion on HIV testing and human rights.
Allais was speaking at the 5th South African AIDS Conference about whether- in theory in a country with a high HIV prevalence – it would be a human rights violation for the government to require every individual to know their HIV status.
Since April last year the government has dramatically scaled up voluntary HIV counselling and testing (HCT) and through its national HCT campaign 12 million people have found out their HIV status.
“A policy of ‘mandatory knowledge‘, in which the individual is required to find out their HIV status and demonstrate he or she has this knowledge, would not be a human rights violation,” Allais stated.
A mandatory knowledge policy would not require the individual to disclose their status, nor the health professional to break confidentiality nor demand ‘mandatory testing’ (where the health professional demands an HIV test),” she said.
HIV testing is not risky, nor invasive, nor painful and the only plausible harm to the individual was the psychological impact of finding out he or she had HIV, she said.
But not knowing one’s status can be harmful, while finding out one’s status has proven benefits.
“Knowing one’s status has benefit for the individual, his or her partner and for public health,” Allais suggested, “but most people do not realise these benefits since they do not know their status or start treatment until late (in the disease).”
If a state infringes on an individuals’ fundamental freedoms then it is are violating that person’s rights, said Allais, but a “mandatory knowledge” policy would not violate the right to privacy (HIV results would remain confidential),
Putting rights in a broader context than that of health, she explained that HIV testing would not violate the right to autonomy nor to bodily integrity.
“We would argue that mandatory knowledge is not at odds with informed consent since it does not require testing without consent.”
One of the delegates expressed relief that Allais’ view was theoretical and not practical.
But Allais is raising an important issue and maybe it’s time to debate this in real time in the real world.
Behaviour change happens but this is not necessarily the result of HIV prevention campaigns, top HIV clinician Professor Francois Venter declared in a debate today about whether HIV prevention actually works and how to measure this.
South Africa has 18% of the worldwide HIV epidemic and still has high rates of new infections despite efforts to prevent them, said Venter at the 5th SA AIDS conference.
Behaviour change campaigns are well resourced but not scientifically driven, he stated.
Venter said, for example, current HIV prevention campaigns are targeting multiple concurrent partnerships as a problem driving the HIV epidemic but a review of the research finds no evidence that these partnerships explain the high rates of infections in sub-Saharan Africa.
He said behaviour change needs to be driven by scientific evidence to be effective and that its track record so far was not convincing.
“Maybe we have not tried the right behaviour change,” said Venter, observing that clinicians do understand how hard it is to get patients to change health behaviours, such as stopping smoking or losing weight.
Dr Saul Johnson, the head of the Health Development Agency, and Richard Delate of Johns Hopkins Health and Education in SA both challenged Venter and painted a brighter picture of what’s going on with HIV prevention in SA.
Johnson said Venter was wrong that:
1) Communications programme don’t work. Johnson said there is evidence, for example with condom use, that they do;
2) If they did work South Africa wouldn’t have such a high HIV epidemic. Johnson said SA got off to a slow start and these efforts take a long time to get results;
3) Randomised controlled trials are needed to prove efficacy. They are not the best tool to assess this and are not implementable, he said;
4) SA must measure success by the rate of new infections. Johnson said lab tests are not 100% reliable and there may be better end points for measuring behaviour change; and
5) SA could get better value from funding “test & treat”. Johnson said that we are not going to be able to treat our way out of our epidemic given its scale.
Delate disputed that prevention campaigns have failed, saying that 80% of South Africans are HIV negative and “it is our job to keep them negative.”
The demand for HIV testing and condoms had increased in the last few years said Delate, suggesting this was linked to behaviour change campaigns.
He pointed out nobody had measured the rate of new infections at the start of the National Strategic Plan in 2006 so it’s hard to assess in 2011 whether it has succeeded in reducing incidence.
The goal was to cut new infections by half by 2011.
Johnson said: “We think we know what works, we just need to do it properly at this point.”
Professor David Serwadda spoke at the 5th SA AIDS Conference this morning
HIV/AIDS studies conducted in Africa are making a significant contribution to understanding the disease, a leading public health expert Dr David Serwadda said today.
The importance of the viral load in HIV transmission, the preventative value of medical male circumcision, the efficacy of mother-to-child-HIV prevention and other breakthroughs in research have been proven in trials conducted in African countries said Serwadda.
Dean of the Makerere University School of Public Health in Uganda, Srwadda said major international funding had played a role in boosting research and science capacity in countries like Uganda, South Africa and Kenya over the past 25 years.
For example, 37% of HIV funding by the NIH in the US, has been directed to Africa.
Serwadda said the funding had improved training, infrastructure and service provision to patients.
He said HIV had impacted severely on health systems, for instance, leading to overcrowding in hospitals and had taken its toll on healthworkers.
“We need to increase investment and resources for health systems,” Serwadda said.
He also called for greater leadership and accountability.
Serwadda spoke at the plenary session this morning of the 5th SA AIDS Conference in Durban
5th SA AIDS Conference chairman Professor Francois Venter opens the conference
The 5th SA AIDS conference started in Durban today with a call to prioritise young people in the next HIV/AIDS National Strategic Plan.
Young people have a high rate of HIV infection, too many of them confront violence every day and many of the youth urgently need access to education Mark Heywood, deputy chairman of the SA National AIDS Council, said at the opening session.
“The bottom line is that the lives of young people have not improved,” he said.
Heywood shared the platform with a courageous young woman Mandisa Dlamini, whose mother Gugu was killed in 1998 for publicly disclosing she had HIV.
“I saw my mother dying but I nearly became infected with HIV. Two years later I was pregnant,” said Dlamini, talking about how young women can make wrong decisions and get into destructive cycles simply to survive.
The vulnerability and exploitation of young women is visible in any South African city. Leaving the International Conference Centre at 10pm tonight, I saw young female sex workers hanging out on street corners only a few blocks away looking for business.
One measure of the success of this conference and the next five-year National Strategic Plan (NSP) will the difference it makes the lives of women like them.
Conference chairman Professor Francois Venter reported on what great progress has been made on tackling HIV/AIDS in South Africa since the first conferences were held in Durban in 2000 and 2003.
But Venter, also president of the HIV Clinicians Society of Southern Africa, warned against being complacent, particularly in gains made around access to antiretroviral treatment.
“Antiretrovirals are magic muti. You go from zero to 100,” said Venter, commenting on how he has seen skeletal children and adults recover from near death to lead healthy lives again.
He warned that if funding for treatment runs out doctors could be telling patients, as they were back in the ‘80s in the US: “We have what it takes to keep you alive but we won’t pay for it”.
About 1.4 million South Africans — 100 000 of them children — are now on ARV medicines but still roughly 50% of people who need the life-saving drugs do not have them.
HIV prevention needs to be prioritised, Venter said, but not at the expense of cutting back on treatment.
