Minister censors AIDS ‘toolkit’
The Ministry of Health has ordered that all references to the Treatment Action Campaign (TAC), gays and pictures of Patricia de Lille and Judge Edwin Cameron be removed from a ‘toolkit’ aimed at empowering people living with HIV/AIDS.
This is according to a letter sent to the health minister and other involved parties signed by 28 people, mostly people living with HIV/AIDS (PLHA) who were part of the process of drawing up the toolkit.
‘We believe that it is dishonest and disrespectful to distort and attempt to rewrite the history of PLHA visibility and disclosure in South Africa,’ notes the letter, which was sent on 3 December.
It adds that, as the text has ‘changed substantially in content and spirit’ the consent granted by people with HIV/AIDS for their stories, quotes, poems and photographs to be used ‘is no longer informed consent’.
The toolkit was commissioned by the health department’s HIV/AIDS Directorate and developed as a partnership between the department, the USAid’s POLICY project and people living with HIV/AIDS. Its core text and stories were developed out of seven workshops in 2003.
Initially, according to the letter, ‘the process was a model of inclusivity and integrity’, with people living with HIV/ AIDS (PLHA) ‘driving the process’.
The POLICY project submitted a final draft of the toolkit to the health department in February.
On 22 November the team drafting the toolkit was instructed by the health minister’s legal adviser, Patricia Lambert, to make a number of changes so that the document could be ‘signed off’ by the Minister on 15 December, according to the letter.
These changes included ‘the removal of all references to the TAC, including text, PLHA quotes, court cases, examples, photographs, illustrations, pamphlets, letters and organisational contact numbers’, states the letter.
In some cases, the ministry wanted to use the personal stories of HIV positive people but remove the fact that they were TAC members or had said that they valued being part of the TAC.
Lambert also did not want Simon Nkoli and Zackie Achmat to be mentioned as examples of gay men who disclosed that they were living with HIV.
‘The only suggested reason touched on was that the Ministry of Health wished to avoid links being made between ‘HIV’ and ‘homosexuality’,’ according to the letter.
The ministry also wanted photographs of the independent Democrats’ Patricia de Lille, Judge Edwin Cameron and Cheryl Carolus to be removed.
The explanation, according to the letter, was that the toolkit should rather highlight ‘community figures’.
‘On the other hand, the MOH has now instructed the addition of high profile government figures in the text and photographs ‘to promote the profile of government more’,’ says the letter.
The letter appealed to the ministry and its POLICY project partner to invite all participants to a meeting to report back on the changes. This would give those participants who now wanted to withdraw their contributions to do so.
‘As a concerned group, we all wish that the toolkit again becomes a resource that we own and are proud of. A toolkit that is in name and in reality by and for all PLHAs,’ concludes the letter. However, 10 days after it was sent, the letter was leaked to Health-e after the ministry failed to respond.
Lambert steadfastly refused to comment on the letter or the toolkit when contacted, simply repeating ‘no comment’ in response to questions. It is thus unclear whether the toolkit was signed off by the Minister on Wednesday as planned. ‘ Health-e News Service.
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