RIGHTS-GHANA: Protecting the Identity of People Living with AIDS

By IPS Correspondents Reprint | | Print |

Isabella Gyau Orhin

ACCRA, Sep 9 2003 (IPS) - Joana (not her real name) hurriedly jumped out of a tro-tro (minibus) at Circle heading straight towards Korle Bu Teaching Hospital. She was about 15 minutes late for her fortnightly meeting with an association of people living with HIV/AIDS in Accra.

It was a special day as they were going to meet with members of the media to solicit their help in passing on the message of the suffering of people living with AIDS to the people and government of Ghana. It had been agreed that the interviewees would be protected and no real names or pictures of any member of the group would be used by the media.

Almost all media personnel who have paid the association visits never used their names or pictures and as such members of this association have been able to keep their identity on the ground a secret, comforting each other and receiving counseling from doctors.

Life as an HIV patient has not been easy. Since Joana was diagnosed she carries the additional burden of having to keep her HIV status a secret for fear of being stigmatised. Later that day as she sat relaxed in her home with her mother watching the news she saw an image of herself being shown as part a group of people living with HIV. Her mother screamed and almost collapsed.

"Hei! Joan, What is this, what! HIV positive? Do you want to kill me? I will kill you first before you develop AIDS, you prostitute," her mother yelled as a terrified Joana took flight to escape her mothers wrath.

During a recent visit to Agormanya last month, another association of People Living With HIV said they had also been treated the same way by the some media and therefore did not want to have anything to do with either a still or motion camera.

A lecturer at the School of Communication Studies, Dr. Audrey Gadzekpo, says apart from violating the right to privacy, media reports on HIV patients without their permission also violated their pride and dignity of these people. "One of the key challenges in HIV reporting is dealing with HIV/AIDS in a way that respects the privacy and need for confidentiality of those affected," said Audrey.

"We may want a story for a greater good if you like, but people living with the virus or illness are the ones who have to deal with any fallout from their condition." She said media could negotiate with the people they were reporting on but ultimately they had to respect their wishes.

"I saw a nice documentary on HIV/AIDS recently and I thought the people behind it had done a good job bringing out the challenges people living with HIV faced. However, the beauty of the documentary was undermined by shots that focused on the woman’s bare breasts and flies hovering around her as she lay emaciated and in pain," she recalled.

Could the story not be told with the same impact without violating the subject’s dignity?

Gadzekpo said journalists had to be careful with issues involving photographs, private conversations and revealing identities – especially those of children and people living in intimate communities.

She said despite of public education, there was still a lot of stigmatisation around HIV/AIDS. "Journalists should be careful not to further stigmatise people living with HIV/AIDS in their reportage through disrespecting their wishes, through being judgmental, through the kind of portrayal we give to people, through laying blame and portraying harmful stereotypes about them.

The new policy of the Ghana Health Service supports Audrey Gadzekpo. It says in part that an individual should have the sole right to disclose his health status and such rights must be respected by health workers and all other persons.

The Coordinator in Charge of the Eastern Region National AIDS Control Programme Dr. Sampson Ofori also believes journalists should not widen the stigmatisation net. He said stigmatisation has contributed significantly to the spread of the disease.

Supporting the assertion that HIV/AIDS patients are stigmatised and discriminated against even by health workers, Dr. Ofori said out of fear of pricking themselves accidentally while taking a sample of blood from HIV patients, some health workers do not put in their best efforts when treating such patients. As a result HIV patients would rather keep their status as a secret than share it with their families.

He said it is wrong for some doctors to insist on doing an HIV test before operating on patients.

HIV/AIDS was first discovered among intravenous drug users in the Americas in the eighties and has killed more people in sub-Saharan Africa than in any other part of the world. Out of the 42 million people living with HIV worldwide, about 30 million are said to be living in Sub-Saharan Africa.(ENDS/IPS/AF/WA/HD/IG/SM/03)

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