Leading South African health and social advocate calls for an end to denialism at South African Conference on AIDS

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“The best way of honouring the memory of Nkosi Johnson and many other children who met premature deaths at the hands of HIV/AIDS is to end denialism now!”, Dr Mamphela Ramphele told a cheering audience last night during the opening of the Second South African Conference on AIDS. She urged fellow South Africans to transcend their past and work together to ensure the human rights of people with AIDS.

Dr Ramphele and Nkosi Johnson

Dr Ramphele is a medical doctor and a highly distinguished scholar who has received numerous prestigious national and international awards acknowledging her leading role in raising development issues and spearheading projects for disadvantaged persons throughout South Africa. She was the first black woman to hold the position of Vice-Chancellor of the University of Cape Town, and was a former Managing Director of the World Bank.

She was chosen to give a special memorial lecture in honour of Nkosi Johnson, the frail young boy with AIDS who confronted the world (and his president) about HIV five years ago, on the stage of the Twelfth International AIDS Conference in Durban in 2000. “I want people to understand about AIDS,” he had said. He asked the world to “care for us and accept us…we are human beings.”

Nkosi Johnson died about a year later. Now, four years later, the treatments for which he begged are only just starting to reach South African children.

Glossary

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

capacity

In discussions of consent for medical treatment, the ability of a person to make a decision for themselves and understand its implications. Young children, people who are unconscious and some people with mental health problems may lack capacity. In the context of health services, the staff and resources that are available for patient care.

frailty

Describes a general decline in physical health and a loss of reserves, most often seen in older people. Frailty leads to a person being less robust and less able to bounce back after an adverse event. A person with frailty may move more slowly, have lost some of their physical strength, have less energy and be less mentally agile. 

sexually transmitted diseases (STDs)

Although HIV can be sexually transmitted, the term is most often used to refer to chlamydia, gonorrhoea, syphilis, herpes, scabies, trichomonas vaginalis, etc.

“But why would an eleven-year old child have to make such an impassioned plea in the South Africa of 2000?” asked Dr Ramphele. “Is this not a country with a government that has explicitly stated that its governance principles are based on ‘Batho Pele’ (People First)? What has gone wrong?”

Dr Ramphele said that HIV/AIDS is like a mirror in the face of South African society, forcing the country to see itself as it really is, and not how it would like to be seen. “Like any face, ours bears the scars of the past,” but she added it also shows “the impact of the realities of today.”

HIV/AIDS and South Africa’s past

“We were dealt too bad a hand by history,” said Dr Ramphele. The legacy of apartheid “contributed to our vulnerability to the HIV/AIDS pandemic and undermines our capacity to address it decisively.”

She noted several aspects of that legacy which helped create the crisis. First, the foundations of the society were built on conquest. Adherence to cultural traditional practices that sometimes conflict with science “might be seen as the only way to defend the dignity of a wounded people.”

Second, the migrant labour system in South Africa (as used by the mining companies) had a disruptive impact on South African family life and undermined the dignity of people housed in migrant labour hostels. This made the miners vulnerable to sexually transmitted diseases, she said and “turned men into conduits of the infection to their families.”

She also believes that the forced exile of many engaged in the struggle against apartheid put them at risk of HIV infection, and that “returning heroes” were carriers of the virus. The illegitimacy of the apartheid state also made it unwilling or unable to tackle the HIV/AIDS epidemic in its infancy, “when it could have been nipped in the bud.”

HIV/AIDS in South Africa since apartheid

The new South Africa has a constitution that is “second to none” in committing to protect “the fundamental rights of everyone.” However, said Dr Ramphele, “the gap between those ideals and our practices in society is large.”

She attributes part of the gap, to the difficulty overcoming the legacy of apartheid, but she also acknowledge that much of the problem comes from weak government capacity to implement policy commitments and to monitor itself. “The failure to acknowledge and correct deficits since 1994 has left us in a weak position to live out our commitments,” she said

Dr Ramphele also said that the stigma still pervades South African society and constrains the response to the epidemic. “The quality of our society will be judged by how well we treat the most vulnerable amongst us. We are not at the moment doing well on that score.”

Part of the problem dealing with HIV/AIDS is its link to sexuality. “All the cultures we bring into the new South Africa are prudish about talking about sex. We just do it.” Also, customs such as polygamy, multiple sexual partners, inheriting widows, unprotected sex, non-sterile initiations rites “all have to give way to safer practices.”

She gave an interesting explanation for why denialism has been so persistent in South Africa. “We have a serious problem of mistrust in our society that prevents us from acknowledging our problems and using the resources we have to address them,” she said.

“Take the case of HIV/AIDS causality. Why did it take so long to have clarity infusing our policy responses? We have a depth of scientific know how and economic resources to have been a front-runner in comprehensive care and treatment to deal a mortal blow to the disease." But the scientists were largely white, male, urban based, and outside the policy making domain of government. Mistrust of the racist system that denied the majority of South Africans scientific literacy and proficiency, constrained evidence-based policy making.

“To add insult to injury, the same racist system had over the centuries in many parts of the world stigmatised black male sexuality as dangerous and driven by uncontrollable lust. Unless we acknowledge the pain of those so stigmatized, we are unlikely to overcome our mistrust and build a better life for all.” But she called for those wounded “to transcend the past and take ownership of shaping a future of dignity for all.”

Transcending the past

Dr Ramphele also called for scientists to stand up to the denialists and profiteers bent on misleading the public (a veiled reference to Dr Matthias Rath who has been selling South Africans his own brand of expensive mega-dose vitamins). “The medical profession needs to play the role of watchdog for poor vulnerable people... How can we allow the current confusion between the role of specific treatment with antiretrovirals and the benefits of good nutrition and supplementary nutritional agents such as vitamins. It sounds so medieval.”

She reminded the audience of the sanatoria that tuberculosis (TB) patients went to before anti-mycobacterial drugs were available. “People received the best care and nutrition possible…and they died. Remember that those early TB drugs too had toxic side-effects but they were better than placebos.”

She said that confusing advice to those already overwhelmed by the trauma of HIV/AIDS should not be permitted. Finally, she called for an end to denialism. "Our country is over ten years old now, we need to take ownership of shaping our country's future and create a better life for all. Blaming apartheid has its limits, just like blaming one's parents for one's failures has it limits too. We need to transcend our past and build a better future by playing to our strengths and minimizing our weaknesses.”