HIV activists oppose identification changes to NSW health database

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HIV is a publicly reportable disease in Australia, with doctors required to notify the health department when a patient returns a positive test – but that information is generally held under a code name. Photograph: Franck Fife/AFP/Getty Images

The New South Wales health department has proposed reversing a decades-old policy of de-identifying information about people diagnosed with HIV, in a move activists warn could discourage people from getting tested.

The change, proposed in a review of the Public Health Act 2010, would mean that the names and addresses of people diagnosed with HIV in NSW would be stored in a government database and could be accessed by public health officials for certain, restricted, purposes.

HIV is a publicly reportable disease in all Australian jurisdictions, meaning that doctors must notify the secretary of the health department when a patient returns a public diagnosis. In NSW, Victoria, Western Australia, Tasmania, and the Australian Capital Territory, that information is now provided in a de-identified format, with a code based on the person’s name and birthdate used in lieu of any other identifying data. The Queensland database is anonymous, and in the Northern Territory and South Australia the person is identified at the notification stage but then protected under a codename in the database.

In NSW, a doctor who discloses a person’s HIV status without their consent to anyone other than a clinician directly involved in their treatment for the disease can be jailed for up to six months.

In a discussion paper outlining proposed changes to the act, the NSW health department said that de-identifying the data would allow health professionals to confidentially follow up with people diagnosed with HIV to see whether they had been able access treatment, and would also provide better data to track and predict the spread of HIV.

The information would be kept in a secure database, it said, and people would still be able to get anonymously tested, and would not be coerced into engaging in treatment.

The identification rules were established in the 1980s to protect people who contracted the disease from discrimination and possible legal prosecution for homosexuality, sex work, and intravenous drug use.

The paper suggested that social attitudes to both HIV and homosexuality have changed markedly in the 30 years since, leaving the de-identification protocols “arguably anachronistic”.

“The ministry’s preliminary view is that there are more benefits than harms in moving to named notifications of HIV and Aids,” it said.

Nicolas Parkill, chief executive of the Aids Council of NSW, said the proposal had some “potential benefits” but it was concerned it “may create a barrier for some people to test, due to privacy issues”.

“We would want to ensure that the systems underpinning this approach address these concerns and that appropriate safeguards are put in,” he said.

Nic Holas and Paul Kidd, advocates who are both open about their HIV-positive status, said the risk that HIV-positive people would be prosecuted, and that fear of prosecution would discourage people at risk of HIV from getting tested, outweighed any potential benefits.

Holas, co-founder of advocacy group the Tribe of Many, said while it was nice to suggest people could now disclose their HIV-positive status without fear of discrimination or persecution, it wasn’t true.

“As a HIV-positive person, we are at constant risk of being criminalised,” he told Guardian Australia. “While we remain under the threat of criminalisation, the risk of an identified database feels like we are being set up … the state is asking us to just kind of trust them that our data will be protected.”

Two people have been arrested in NSW in the past six months for allegedly knowingly or recklessly exposing their sexual partners to HIV.

“It’s a bit rich for the NSW government to be talking about reducing stigma when we are still already being criminalised because of this disease,” Holas said.

The department said concern about increased prosecutions was “unfounded,” because it already had the ability to identify people believed to placing others at risk.

Kidd, the chair of the Victorian HIV legal advisory group, said anything that triggered the deep historic distrust between people living with HIV and government agencies, and could therefore make people reluctant to get tested for the condition, was not worth the risk.

“We have got the best epidemiological data in the world in Australia from the system that we have now,” he said. “To enact a policy that would possibly discourage people from getting tested just to get better data is completely backward.”

Kidd said the idea of “a bureaucrat” calling to check on the status of his treatment was “a little bit chilling”.

“That data – your HIV status, as a piece of information – that belongs to you,” he said. “It doesn’t belong to the government. It belongs to you.”

In a statement to Guardian Australia, the NSW health department said it was “not aware of any evidence showing that named notification leads to decreases in HIV testing”. It pointed to a 1998 US study that found “the impact of surveillance on those seeking HIV testing will be small and should not hinder HIV prevention efforts”.

It said the information would only be disclosed to the secretary and would be protected under the NSW Health Records and Information Privacy Act.