The dangers of My Health Record for HIV+ people - Positive Life briefing paper (+video)

*click to enlarge - police don't need warrant

Positive Life, along with Sex Workers Outreach Project (SWOP) have together put out a briefing paper on the dangers to those of us in such groups. In it they highlight the danger to people living with HIV (PLHIV) of which is obviously of interest to me, as well as those who are sex workers or otherwise involved in illegal activity such as drug use and the like. Which could be any one of us really.

I myself went through an ice period some years back, long story but part of my history now. It involved me being self destructive, a lot of unsafe sex, and an HIV diagnosis. However I was able to speak candidly to a psychologist about it all and got tested very early on after a rough sero-conversion. I had no fear of the health profession about who would have access to what I told the psychologist before the test, or indeed my HIV status after the test. Apart from going on some gov HIV register that was it.

The My Health Record however is different. Despite a My Health Record being already created some years back for me (which has been very useful BTW with all my medical conditions and hospital admissions) the current legislation allows far wider access to personal health information than ever before. Unreasonable access IMO. For example, the police will be able to access personal health records without a warrant simply if they "reasonably believe" that they have reason to do so.

This causes all sorts of complications for people who would benefit from accessing health care, possibly needing an HIV test, possibly having a history of a number of STI infections, possibly getting tested regularly for such infections. Even what a psychologist may write into the My Health Record will be accessible by third parties and by the police without a warrant. The implications for criminality and stigma where there was none before, are obvious. It will make people who are in most need of health care avoid treatment for fear of prosecution, something that HIV+ people have long fought against. Stigma and fear spread HIV. In that sense My Health Record goes against efforts to End HIV.

When I was diagnosed with HIV the response by the health community in eastern Sydney was amazing. There was no judgment, no shame, no stigma, and no fear. I was treated with respect and finally got help for the underlying reasons about why I became so self destructive in the first place. My HIV was treated. My depression was treated (and still being so).

If the same experience I went through back then was to happen under My Health Record, would the excellent outcomes be the same? Or would I be worried about getting tested, knowing that the police and other third parties would have access to that information? Would I be criminalised in some future police investigation for my drug use? Would an ignorant health care receptionist with access to my health records treat me poorly? 

This is wrong on so many levels. I'm deciding I'm going to Opt Out.

Below are some excerpts from the Positive Life Briefing Paper, of which you can read in it's entirety here (PDF).

Positive Life Briefing Paper