‘Will anyone still love me?’: What it will be like to share your HIV status in 2023

When Beau Newham told his friend Emily Ninnes that he was HIV positive, her first joking thought was: “Damn, you’ve ruined all my plans.”

That same day over coffee in 2019, Emily had planned to ask her 22-year-old friend to be her sperm donor.

“One of the many reasons Beau was an ideal donor for me was that his health was considerably better than mine,” Emily told ABC.

“I thought, ‘Oh, idiot, now you have a chronic health problem too,’ but I had to keep reminding myself that genetically he’s still an ideal donor.”

Emily never let Beau’s HIV status change her mind.

Emily was already well informed about HIV, so she wasn’t worried about Beau’s health when he told her his status.

Like most people living with HIV in Australia, Beau takes one pill a day or receives an injection every two months that keeps his HIV viral load at an undetectable level.

Having an “undetectable” or “untransmittable” status, commonly known simply as “U,” means you cannot transmit the virus.

Now, Emily has a “mini version of Beau,” born less than two years after her diagnosis.

And the 40-year-old has another on the way, also conceived thanks to Beau’s sperm donation.

“I was never really worried about his health,” she said.

Stigma still slows progress

Beau is among the estimated 29,000 people living with HIV in Australia.

HIV diagnoses have almost halved in the last decade, with 555 new cases recorded in 2022, according to data from the Kirby Institute at the University of New South Wales.

“This represents about 0.1 per cent of the population, so it’s a really low prevalence of HIV when compared to other places in the world,” Dr Skye McGregor, head of the Innovation Research Group, told ABC. in Surveillance from the Kirby Institute.

Australia aims to achieve virtual elimination of HIV transmission by 2030.

The human immunodeficiency virus (HIV) is an infection that attacks the body’s immune system. If left untreated, HIV can gradually destroy the immune system, causing a decline in health and progression to AIDS.

AIDS is the final stage of HIV that renders the body’s cells unable to fight infections.

Beau, who lived in Indonesia for six years, says he was glad he returned to Australia when he received his diagnosis.

Indonesia is one of the few countries where the number of new annual infections is increasing, and Beau said many of his friends died from AIDS and AIDS-related illnesses.

But while biomedical advances and the quality of Australia’s care and resources have allowed him to take control of his health, he says social changes have not kept pace.

He has discovered that fear and anxiety are so deeply ingrained that positive information does not come.

“HIV has changed so much in the last five years…if you haven’t heard anything about HIV in the last five years, then you basically won’t know anything about HIV in 2023,” Beau said.

While advocates say “we haven’t had the post-Grim Reaper announcement,” Beau and others hope that by sharing their stories on World AIDS Day, December 1, they can help change the narrative.

‘Will anyone still love me?’

When Marc Mendoza was diagnosed with HIV five years ago, the world suddenly went silent.

“I remember crying when I found out,” she said.

“It’s one of those moments when everything goes silent in your head and everything is silent around you.”

It wasn’t long before the 39-year-old felt confident that his health would be fine and he would be able to “live a long and healthy life.”

“I think managing the virus was easy,” he said.

But what Marc continued to fear was the social and emotional aspect of living with HIV, particularly the revelation of his status.

“The process of telling my previous sexual partners and disclosing my HIV status to new partners, family and colleagues was the most difficult aspect to address,” she said.

Marc’s mother, Mayette, knew her son could live a long, healthy life with HIV, and his status did not change their relationship. (Supplied: Thorne Harbor Health)

Emil Cañita volunteers as an HIV peer worker with Living Positive Victoria, which represents HIV positive people, and conducts outreach workshops through the Positive Asian Network Australia (PANA).

“One of the saddest experiences I’ve had when I was diagnosing someone with HIV in the clinic was when their response was not that they were worried about the treatment, but rather their question was, ‘Will anyone still love me?’” they said. . saying.

Emil has been living with HIV for 10 years and has learned to wait until he has built trust with someone before sharing his status.

“For me it’s really a safety issue,” they told ABC.

Emil says the outreach workshops have been helpful for people to hear how others approach sharing their HIV status. (Image: Sean Barrett)

Access the right support

For Marc, a Filipino Australian, it was important to tell his mother Mayette about his situation from the beginning.

“I didn’t want years to go by and my parents to think it was something I was hiding from them, especially when it wasn’t something that scared me,” she said.

Both Marc and his mother are nurses, so Mayette was not worried about her son’s health.

Her main concern was the stigma he would face, but the support she was receiving reassured her.

Living Positive Victoria assigned Marc a “peer navigator”, he became involved with the Thorne Harbor Health community (formerly the Victorian AIDS Council) and connected with other Asian Australians through PANA.

“Mom knew I had access to these social groups so I wouldn’t feel isolated.”

Advocates are using World AIDS Day, December 1, to raise awareness about the progress made in the fight against HIV. (Burak Karademir/Getty Images)

Immigrants may experience higher rates of HIV

While Marc had a positive experience accessing the right support and talking to loved ones, he says many people of Asian descent in Australia face challenges.

Immigrants from regions with high HIV prevalence may experience higher rates of HIV than the Australian population as a whole, according to Australia’s leading HIV advocacy body, Health Equality Matters.

People from diverse backgrounds often struggle to navigate the health system, the agency’s deputy chief executive, Dash Heath-Paynter, told ABC.

He says there is Many services provided by its member organizations and the community. helping people from diverse backgrounds in Australia feel comfortable accessing treatment and information.

These include testing days at clinics that operate in different languages.

But there are calls for rapid testing to be more accessible and for PrEP, a pre-exposure prophylaxis medication that prevents HIV in people at risk of infection with the virus. — be subsidized and available to people who cannot access Medicare.

Naked members of a fraternity hold banners as they participate in an “Oblation Run” on the campus of the University of the Philippines in Manila.(AFP: Dante Diosina Jr.)

Emil says the reality for people in countries like Indonesia and the Philippines is “a very, very different reality than what we have here.”

And because of fear, increased discrimination, or cultural sensitivities around talking about sex, they may delay testing and treatment.

Finding out they are HIV positive in Australia can be very isolating and often reinforces some views from their home countries, “that it’s bad to be gay, and this is what happens to queer people as punishment,” Emil said.

On Thursday, the Albanese government announced it was investing up to $12 million in a new partnership to support communities and local governments in Southeast Asia and the Pacific to improve HIV testing and treatment, reduce stigma and discrimination and reduce transmission.

Heath-Paynter said Health Equality Matters was also lobbying the government to help break the stigma by removing visa restrictions for immigrants living with HIV.

Australia is one of the only Western countries that still imposes limitations on people living with HIV.

The ABC has contacted the Immigration Minister for comment.