Most of us long-termers have learnt to tell ourselves this is a result of ignorance or prejudice. But for the more recently diagnosed it can cause real trauma requiring peer support or counselling.

I recently spent a few hours with fellow long-termer Toby (not his real name). He disclosed part of his history since diagnosis and I was shocked that someone I’d known for over forty years, with a similar medical history, had experienced some quite nasty instances. Toby said that at least half of the sexual partners he had pursued in earlier days baulked when he revealed his status, even when condoms were to be used. This negativity has changed since he has been on the latest HIV treatments and has an undetectable viral load. Even so, researchers have found that there is still resistance from some people to trust the science of U=U (Undetectable equals Untransmittable) in sexual negotiation.

Workplace stigma

Toby’s experience with employers was an even bigger surprise for me. He was a highly trained scientist working for a government department in the late 1990s and was initially refused full coverage of his superannuation once his positive status was revealed. He appealed this injustice and went to a highly respected immunologist who argued his case and that his health had not been seriously compromised by the virus.

Then another blow was delivered seven years later when workplace gossip led to his status being disclosed to fellow workers. His boss at the time said that he would have to inform anyone he was doing field work with of his status as they had a right to know.

Toby refused to comply, knowing it would make work life very difficult, and appealed to a higher authority in Canberra. Fortunately, this was resolved in his favour, and he was able to continue to undertake field work as an important part of his job.  But relations had soured with his boss, and he decided to leave that organisation and move to Melbourne.

To add to his difficulties, Toby’s relations with most of his family were strained. His siblings didn’t want him to share details of his HIV status with his mother who was already upset about him being gay.

“Nothing about that part of my life, if raised by me in conversation, got any response from family,” he says. “So, no support was offered.”

The value of peer support

While I have been much more fortunate with my family and had no problems with my employer (my boss was an understanding gay man for much of my career), Toby and I both got our greatest support from meeting other people with HIV.

In the early days, the Immunology Department at the Royal Melbourne Hospital put a few HIV+ patients in touch and they decided to meet in each other’s homes on a Thursday night. A friend suggested I attend, and I was pleased to see Toby there as we had known each other for a while. Later we both joined a group which was established through Fairfield Hospital called Melbourne Positive Friends which held weekly meetings with over thirty participants and lasted until 1993.

It was a great relief to be able to talk with others in the same boat and let go of the frustration we felt from the media or other people. We posed no threat to anyone, but despite education campaigns at the time to try to defuse this fear of HIV, most of us still faced ongoing stigma if people around us found out our status.

Unfortunately, the Grim Reaper campaign probably increased stigma towards us with those skeletal images of the medieval harbinger of death looking a little too like some of us with our skinny AIDS-affected bodies.

Occupational stigma

In 2012, Positive Life NSW intervened in a difficult situation in Sydney. Forensic medicine workers had refused to reconstruct the bodies of people with HIV and Hepatitis C after autopsy for the final viewing for family and friends. Positive Life NSW maintained that this perpetuated stigma for those affected by these viruses and as a result, the NSW Department of Forensic Medicine developed a technique to restore bodies after autopsy which eliminated the use of the suture needle which improved the safety of mortuary staff doing the procedure.

Universal approach for Health Care Workers

Scientia Professor Carla Treloar from the Centre for Social Research in Health in Sydney has spent much of her career investigating the effects of stigma on various illnesses, including HIV. Writing in the Harm Reduction Journal ⁽¹⁾, Treloar and others write of the importance of reducing stigma to improve quality of life in a range of medical conditions but with a focus on blood-borne viruses.

They suggest that a universal precaution approach should be adopted by all health care professionals, so that their care approach to patients is the same high quality without singling out specific medical conditions. They note that conditions and experiences such as HIV and injecting drug use can provoke stigmatising behaviour if health care workers allow their judgments about lifestyles or practices to influence their behaviour or the language used with patients or families.

The inevitable response from patients to being confronted by stigmatising behaviour in health care is to avoid attending appointments or receiving treatment from that practice.

Mental health example

On a community level, the authors note the great value of peer support from positive organisations at times when these stigmatising behaviours occur. Professor Treloar spoke to me about a British campaign called “Time to Change” which had an impact in changing community attitudes to mental health. Run by an organisation called Mind and Rethink Mental Illness, it included a series of social media campaigns, community projects and celebrity endorsements to improve attitudes and behaviours towards people experiencing mental health problems. It lasted for thirteen years from 2007 to 2021 and was financed by a big lottery fund. The campaign is credited with having at least a 13% positive change in attitudes to mental health in England.⁽²⁾

Taking a similar approach here to combat HIV stigma would require a big dollar commitment from government.  Professor Treloar noted that even though there have been major advances in treatment with over 95% now on medication, over 75,000 people on Post and Pre-Exposure Prophylaxis, and the Federal Government funding National HIV Strategies to educate the community, there is evidence that HIV stigma still exists in some health care settings. She thinks that there is a pressing need to educate the health workforce.

While numbers of HIV infections might be going down, those of us living with the virus (30 000 at the last count) will still need ongoing care and support into the future. We will still need support from HIV organisations in our states/territories and government funding to provide these services. These organisations should continue to promote the story of people living healthy lives in the community and not being any threat to others.

The HIV stigma that we experienced when there were no or inferior treatments available was sometimes horrible in its intensity and has left mental scars in some of us.

We need to be sure that those newly diagnosed with HIV will receive a non-judgmental, stigma free response from friends, and medical staff alike.

It was a hyped-up message of contagion in the early days of HIV, with little reason for the intense fear it created, and we should make sure that never happens again.

1. Carla Treloar et al, “A universal precautions approach to reducing stigma in health care: getting beyond HIV-specific stigma”, Harm Reduction Journal, 19, Article number: 74 (July 2022)
2. Time to Change: https://www.time-to-change.org.uk/