The current lawsuit in the Johannesburg High Court by three HIV-positive women against Independent Democrats leader Patricia de Lille and journalist Charlene Smith is uncovering more than just issues of privacy.
It is also highlighting South Africa’s urgent need to normalise HIV in order to prevent a social backlash after a person discloses a positive status.
The three women are suing De Lille and Smith, as well as publisher New Africa Books, over the publication of their identities and HIV status in De Lille’s biography, Patricia de Lille. They are claiming R200Â 000 each from both De Lille and Smith, and want their names to be removed from the book.
The women allegedly approached De Lille with complaints about an HIV/Aids drugs trial in which they participated between 1999 and 2001.
Mark Heywood, of the Aids Law Project, which is representing the three women, says the trial is indicative of how far South Africa still must go to end the stigmatisation and subsequent maltreatment of HIV-positive people, especially poor women, such as the plaintiffs.
“If you’re a black woman living in a shack, in an informal settlement, your life [most likely] depends financially on abusive men. Your ability to disclose is fundamentally different than if you are a white judge,” Heywood says, referring to Judge Edwin Cameron’s disclosure of his HIV-positive status years ago.
A positive diagnosis for a poor woman who cannot afford immediate medical care, or who cannot afford to lose her bread-winning partner after disclosure, makes her more prone to being traumatised, according to expert testimony in court on Thursday.
Many people still live in an environment of fear and hopelessness that restricts their ability to be tested and disclose their status.
One of the three women who are suing lives in an informal settlement, is unmarried and has little to no formal education, which exacerbates her stigmatisation.
After learning their HIV-positive status, all three women feared that their families and lovers would find out, or that they would be kicked out of their living arrangements.
“I disclosed the information about my HIV to my mother, who became very aggravated. She rejected me and threw me out of the house,” wrote one of the women in her affidavit. “[Then] I moved in with members of my extended family, but later got my own place. I don’t disclose my HIV status to any of them because I fear that they might reject me.”
Another plaintiff’s boyfriend burned down her shack after learning her status. The woman later attempted suicide by dousing herself in flammable liquid and setting herself on fire.
“The other two women went through a long period of serious fears about whether their relatives would find out,” Heywood says.
In his recent book Witness to Aids, Judge Cameron argues that his ability to disclose his status to the public was a result of his social privilege. He had a secure job, access to medical care and the support of loved ones, which enabled him to fight for his life openly and successfully.
“He says at the point [when] he disclosed, he realised he was in a position to do so because he occupied a job that he couldn’t be fired from, and understood the value of close family and friends,” Heywood says. “What he did was something thousands and thousands of people can’t do.”
Impact on disclosure
Because of this reality, this trial’s outcome will have a significant impact on the way disadvantaged people regard the disclosure of a person’s positive status.
Some are hopeful that a victory for the plaintiffs will encourage people to feel confident when being tested.
“If they [the plaintiffs] win this trial, it will give people more security to know they can get an HIV test and their confidentially has to be protected,” says Nathan Geffen, of the Treatment Action Campaign.
But disclosure has yet to be seen as a better alternative to suffering in silence, says Nombuyiselo Mapongwane, an inspirational speaker who is HIV-positive.
She disclosed her status to her family two weeks after her diagnosis in 1997. She says the disclosure was more difficult then, because the health-care system lacked mechanisms of treatment and counselling for HIV-positive people.
“The doctor didn’t look me in the eye, he couldn’t believe that the test came back positive,” says Mapongwane. As she grew ill, she shrunk into fear.
“I needed help; I could not cope at the time. I feared rejection, stigma and the myths surrounding Aids,” she says.
Now, Mapongwane and her partner have fashioned a lifestyle of understanding around her illness.
“How do we deal with the stigma if we don’t disclose?” she says.
However, given the trial’s focus on HIV stigmatisation, the prosecution runs the risk of perpetuating the stigma and proving that disclosure is something that ruins, and not liberates, lives.
For the past few years, these women’s lives have been a series of disappointments and incidents, Heywood says.
“It goes to show how brutal the stigma really is.”
Anti-retroviral trial
Between 1999 and 2001, the three women participated in a clinical trial at Kalafong hospital to test the efficacy of an anti-retroviral drug under the auspices of the University of Pretoria.
Several women, including the plaintiffs, complained about the drugs’ negative effect on their health. Some of the women stopped taking the drugs during the trial because they felt their health deteriorating.
Allegations that the trial had been conducted badly spurred De Lille to become involved on behalf of these women.
The University of Pretoria launched an investigation into the allegations and found no problems with the trial. The investigation produced a report, which used the names of the three women as witnesses. The report was dispatched internally, and a copy was also given to De Lille.
De Lille then forwarded the report to Smith, who was collecting archives, pictures and reports to write De Lille’s biography.
Smith decided to include excerpts from the report in De Lille’s biography, in a special chapter on De Lille’s long involvement with HIV activism.
Neither De Lille or Smith gained permission from the women to use their names in the biography, Heywood says.
When the HIV-positive women asked De Lille and Smith to have New Africa Books reprint the books without their names, De Lille and Smith issued a statement saying any action against them “will be defended”.
Smith argues that the report sent to De Lille was not presented in a confidential matter, although the university had gained written consent from the three women to use their names as witnesses for the report.
With both sides making few concessions, one fact is clear, says Heywood.
“This is showing there is still a hell of a lot of work to be done,” he says. “If we can’t create the environment of confidentiality, we can’t prevent the HIV epidemic.”