A biography of politician Patricia De Lille had ”devastating consequences” for three women whose identities and HIV positive status were disclosed in the book, the Johannesburg High Court heard on Friday.
The women — who may be identified only by their initials — now lived in ”constant fear” of their family and communities finding out their status, advocate Daniel Berger, appearing for the Aids Law Project, told the court.
”Did you ever give Ms De Lille permission to put your name and HIV status in the book,” he asked one of the woman, known as SM.
”She did not even inform us she was going to write a book,” she replied.
SM admitted that the first and last time she ever met De Lille, she allowed the politician to question her about a clinical drugs trial in which she and the others participated at Kalafong Hospital, west of Pretoria, between 1999 and 2001.
She and the other women had agreed to this only because they were ”scared” after hearing from De Lille that many people had died or been taken ill from taking the tablets being tested.
SM told the court that when De Lille told them she would be asking the University of Pretoria to investigate the trial, she and the others signed letters consenting to the research.
Her hands clutched between her knees and her eyes mostly closed as she rocked back and forth on the witness’ bench, the 32-year-old SM testified that she was ”extremely upset” when her doctor later told her she had been named in the book and showed it to her.
Although unable to read English, she went out and bought a copy. Her 15-year-old son found it, read it and ”at that time I started becoming traumatised and my whole life became miserable up until today,” she told the court.
Until then her husband, and mother were the only relatives she had informed of her HIV status.
She had already lost a child to the disease and a brother-in-law, whose surviving wife was ridiculed by his family, the court heard.
Dr Mariette Botes, who ran the drugs trial, testified under cross-examination that she found the book on the shelves of CNA shortly after it was published, opened it, paged through it and bought a copy when she found her patients’ names inside.
Told her name was in the book, another of the women, NM, was so angry she stood in Botes’s University of Pretoria office ”shaking her arms around”. The third woman, LH, was also shocked Botes told the court.
The three women are asking the court to order that their names be removed from all remaining copies of the book Patricia de Lille by Charlene Smith, and for compensation.
They have taken to court De Lille, Smith and the publisher of the biography, New Africa Books.
Despite requests to remove the book from the shelves, 3 016 copies were sold in 2002, 590 in 2003 and 197 in 2004, with a further 17 sales in 2005.
At issue is the use in the book of a report on the university’s investigation into the drugs trial — which the plaintiffs contend was not meant for public consumption.
De Lille, Smith and New Africa Books admit that De Lille gave Smith the report, but submit that nothing in it was or is confidential.
The plaintiffs deny both this and the defendants’ further contentions that they approached De Lille and asked her to take up their complaints about the trial with the University of Pretoria, at no time asking to remain anonymous.
The women have condemned their identification in the book and the disclosure of their HIV status as an ”invasion of their rights of personality”, among these the right to privacy, dignity, and psychological well-being.
Testifying earlier on Friday, Botes, told the court there was still a tremendous stigma attached to HIV/Aids.
Kalafong Hospital’s HIV/Aids clinic did not want to traumatise patients any more than they had already been by their family and friends.
”We want to protect them as far as possible,” she testified. In a clinical trial only the initials and birth dates of patients were used on all documentation removed from the site.
”Confidentiality is regarded as of utmost importance,” she said. – Sapa