Why ‘leaking’ of identities of HIV positive patients sets TN back by decades

TV channels unwittingly revealed the identity of a HIV positive donor recently, that allegedly led him to suicide. In another instance, a doctor revealed the name and other details of a woman who alleged she was transfused with HIV-infected blood.
Why ‘leaking’ of identities of HIV positive patients sets TN back by decades
Why ‘leaking’ of identities of HIV positive patients sets TN back by decades
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Nineteen-year-old Saravanan* was shocked to find out that he was HIV positive during a routine blood test; and his worry was multiplied by the fact that he had recently donated blood. When the teenager decided to go to the Sattur Government Hospital and tell them that he was positive – he realised the hospital had already been negligent, and transferred the infection to a pregnant woman. Adding to his trauma, his parents allege that his identity was leaked by the hospital to television channels – who in turn did not do enough to conceal his identity when they played his sound bytes. And when his friends, who easily identified him from television reports, started questioning him about his HIV status, Saravanan was driven to suicide, his parents have now alleged.

A day after the suicide of the 19-year-old donor, Saravanan’s parents have filed a petition before the Madras High Court, where they have slammed the media for publishing a video of him, which upset the young man, they said.

Even as the negligence of the Sattur Government Hospital has shocked the state, the way this issue has been handled by the media – along with another instance related to HIV – has raised questions about the ethics of reporting about the issue.

When the Sattur incident came to light, a few television channels published a video byte of Saravanan, with his face blurred. While his name was not published, Saravanan’s parents have alleged that the shots were enough to identify him. The more worrying question is of course that someone in the hospital or blood bank had leaked his identity to the media, which in turn did not take necessary precaution to completely black out his identity.

“I submit that after the media publication of this incident, though without his name, there were shots shown of him on TV and hence locally he had been identified to be the person who was HIV positive and had donated his blood. My son’s friends came to him and started asking him about his HIV status. This upset my son very badly. [Saravanan] felt ashamed that his close friends had come to know about his HIV status and were also asking him directly only because the media had accessed him. With no counselling being made available to him immediately and in his terrible mental state of mind, my son therefore consumed poison on 26.12.2018 afternoon near Kamudhi church campus,” Saravanan’s parents’ petition states.

Days later, a Chennai woman made similar allegations, stating that she was administered HIV-infected blood in March this year at the Kilpauk Medical College (KMC) in Chennai where she received treatment to raise her platelet count. KMC denied this, stating that an enquiry had been conducted into the matter. In a press conference that was live on several Tamil television channels, P Vasanthamani, Dean of KMC, named the woman and even gave out her blood sample file number.

HIV status disclosure is entirely up to the patient

The two incidents have caused outrage owing to their blatant violation of the law. According to the Human Immunodeficiency Virus and Acquired Immunodeficiency Syndrome (Prevention and Control) Act, 2017, no one is allowed to disclose the HIV status of a person without express consent.

Speaking to TNM, Ramya Kannan, a journalist who has been covering health with The Hindu for over two decades, points out that the HIV Act makes it clear that the decision to reveal HIV status is left entirely up to the patient.

“The HIV Act makes specific mention of the privacy concerns of someone who has been detected with HIV infection and specifically from the point of view of the medical practitioner. The practitioner is under no obligation to communicate, even to the spouse. It is entirely up to the person with HIV to reveal or not. Even if the persons themselves come forward, the hospital should maintain its side of the law.”

Ramya adds that television channels showing documents held up by the KMC Dean also revealed patient details inadvertently. “The government doctor should have been careful,” she says.

Media sensitivity is key

B Jayashree, a development communications professional who has worked closely with HIV/AIDS prevention, says that the whole affair has been handled very sadly.

She says, “For a state that is supposed to be the forerunner in HIV prevention, this is setting us back 15 years. One of the most important things is HIV status disclosure. The stigma is present because it could be transmitted sexually or because of having multiple partners. This is why when one goes for testing and counselling, the results are to be confidential. It is disclosed only to the person concerned.”

In the midst of media’s hurry to break news, Jayashree reminds us that this is not an open and shut case. “Of the three major modes, blood transfusion is a very well-known method of HIV transmission along with intravenous drug use. But people only focus on multiple partners or unprotected sex. Media should understand that this is not about flashing one case. Jumping into a debate without seeing the big picture is detrimental to the issue. Jumping in without understanding sets back all the work people have done over the years to bring about sensitivity. Media needs to introspect about where all the loopholes have started forming and if we have gotten complacent. We need to ask, is the society going back to stigmatising HIV?”

Pointing to resources for journalists, she says, “Journalists are already very well aware of all the protocols that need to be in place. If not, there is a ready reckoner by UNAIDS on terms to be used and not to be used. This is where the media debate has to be moderated. If we over-dramatise a single case without looking at the big picture, it will have an overall negative effect on the reportage on HIV.”

*Names changed

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