Fears over HIV database changes
Image: (Photo credit: Ann-Marie Calilhanna; Star Observer)
HIV ACTIVISTS are fighting against proposed changes to state laws which would have the names of people living with HIV (PLHIV) added to a NSW Health database.
The mandatory five-yearly statutory review of the Public Health Act includes proposed changes to Section 56 of the Act which would seek to remove the exemption HIV/AIDS has from being a notifiable disease.
Currently under the Public Health Act, medical practitioners and pathology laboratories are required to give notice to the Health Secretary of the name of a patient with a notifiable disease.
According to the statutory review, HIV was originally given the de-identified notification because at the time “there was little individual health benefit for a person without symptoms to be tested for HIV as there were no effective treatments and an HIV diagnosis was regarded as a uniformly terminal condition”.
“As mentioned above, there were also heightened concerns about privacy and HIV related stigma and discrimination and the adequacy of laws and policies to address these important issues,” the report says.
One of the reasons given in the review for changing HIV to a notified disease is that early treatment has been proven to be the most effective method of treating HIV, “the public health management at the population level aligns with best clinical management of individual”.
The review also argues PLHIV have been giving out their information in other areas of the health system, “such as providing their Medicare number prior to being dispensed HIV antiretroviral medications”.
But The Institute of Many (TIM) co-founder Nic Holas does not trust NSW Health to keep the database private.
“My concern is that these changes will end up creating a bigger barrier to HIV testing and prevent HIV+ people from living a full, open life,” he told Star Observer.
“Criminalisation is a barrier to testing, treatment, and living a full open life as a PLHIV.
“Fear of being criminalised is linked to suspicion of the state and surveillance. Those who have been failed by the state are more likely to be suspicious of it, and to be handed to the same state as a named and observed individual will lead to a reduction in testing rates and ultimately do the opposite of what this new measure is attempting – retention of PLHIV in care.
“While we continue to be criminalised, we cannot trust the state to keep that information safe and secure.”
Holas said he understood why NSW Health was keen to make the changes to try and retain more people PLHIV on treatment, but urges people to contribute to a survey which will help shape the submission of ACON and Positive Life NSW to the review.
ACON has confirmed it sees the benefits of the proposed changes, but acknowledged it may put some people off testing.
“In regard to named notifications we acknowledge that there may be potential benefits, including improved patient linkage to, and retention in care, as well as a better understanding of HIV transmission risk factors,” ACON CEO Nicolas Parkhill said.
“However, we do have concerns, and these have been expressed in the community consultations we have been undertaking, that named notifications may create a barrier for some people to test, due to privacy issues.
“Further, there is also a shared concern that the information may be used in a way that could be perceived as overly focused on ensuring people are on treatment, or for the purpose of law enforcement or public health orders.
“If named notifications were to be progressed we would want to ensure that the systems underpinning this approach address these concerns and that appropriate safeguards are put in place.”
NSW Health has told Star Observer it will provide an official response to our enquiries tomorrow.
Despite its CEO Lance Feeney publishing an opinion piece in SX Magazine supporting the proposed changes, a spokesperson for Positive Life NSW said the organisation was hesitant to make a comment until its submissions was given to NSW Health.
“Once this has occurred, we are more than willing to address your questions next week,” he said.
In his opinion piece, Feeney said: “Positive Life believes that the proposed changes will have more benefit to people with HIV than harm. However, we are aware that some members of the community will have concerns about the changes”.
Other proposed changes in the review in the area of HIV can be found in the review.
People can either share their thoughts on the issue via the online survey or make a direct submission to NSW Health by June 3. The details to send the submission are:
Health Protection NSW
NSW Ministry of Health
Locked Bag No. 961
North Sydney NSW 2059
Email: [email protected]
Databases on HIV individual people, you have to be fucking kidding me – this is an insane idea personally coming from bigoted Liberal Mike Baird. What’s next a Muslim register? Donald Trump would want that implemented! I personally want a Bigot’s register set up! Since I am HIV positive and gay – I too could be listed on a register somewhere! Scary and frightening stuff!
Dear VI, are you HIV positive? Doesn’t sound like it, as you think Hep B and HIV attract the same level of discrimination.
Vi raises an interesting point why are some but not all infections notified with identifying information.
With the high incidence of data security breaches the progressive thing would to make all infection reporting de-identified.
HIV is the only notifiable disease that has this exemption where notifications don’t include names and addresses. I just don’t see how HIV is any different to hepatitis B in this sense. In our current medical environment, they’re both lifelong, incurable viral infections that present as manageable chronic illnesses if treatment is accessed. They’re both sexually transmitted and people living with both conditions are stigmatised, but I would argue that stigma and discrimination against both HIV and hepatitis B has decreased markedly in the recent years. They disproportionately affect the same marginalised communities, including gay men, people who inject drugs, and Aboriginal and Torres Strait Islander people. They’re both subject to the same aspects of criminalisation – the laws around sex and disclosure/taking steps to prevent transmission apply to hepatitis B in the exact same way they apply to HIV. So why are we OK with people diagnosed with hepatitis B having their names and addresses recorded, but demand an exemption for people diagnosed with HIV?
Thanks Nic for your voice.