Shock diagnosis: ‘I thought it was cancer’

By | December 3, 2018

Cath Smith never thought it would happen to her.

“I remember someone said to me ‘it’s only people who have bottom sex who get HIV’,” says Ms Smith, who lives in country Victoria.

“But I’ll put it bluntly, I’ve never had anal sex. It’s important people know you can catch it through having straight vanilla sex.”

This Saturday, December 1, is World AIDS Day.

Overall, Australia is the envy of the world when it comes to combating HIV, the virus that left untreated can lead to AIDS. According to the Kirby Institute at UNSW there were 963 new HIV notifications in Australia in 2017, a 5 per cent year on year decline.

The fall is chiefly due to an 11 per cent drop in HIV notifications in gay and bisexual men who made up 63 per cent of new cases. A success indeed.

But there are also some concerning statistics and it turns out, HIV in Australia is on the rise in heterosexuals.

HIV diagnoses in heterosexuals are rising. Last year 238 straight people in Australia received a positive HIV result, a 14 per cent rise from last year. It’s an ongoing upwards trend. Straight people born outside Australia have a heightened risk.

The government has now confirmed an official aim to have zero positive HIV diagnoses by 2020 won’t be met. It’s been replaced with a 2022 deadline to “virtually eradicate” transmission.

Globally, the UN says 37 million people are living with HIV, a figure that is also rising. In the Asia-Pacific region, there were 280,000 new diagnoses last year and only half of those with HIV have access to medicine.

‘I THOUGHT IT WAS CANCER’

Cath, 47, who has worked in administration in local government and engineering firms, contracted HIV in Melbourne in 2008. She still remembers the encounter.

“It was just normal sex, traditional missionary, the position you learnt in sex ed.

“Then two weeks later my eyes felt like they were going to explode, I was covered in a rash, exhausted and I had lumps at the back of my neck that were like golf balls,” she told news.com.au.

“I thought it was cancer. I would never have asked for an HIV test because of my perception of who got HIV. I didn’t think it would happen to me. We tested for glandular fever.”

Unknown to Cath, she had been seroconverting.

This is the initial process by which the body furiously, and fruitlessly, attempts to fight back against the newly introduced HIV virus once it manages to take hold.

Some people have few symptoms but for others it manifests as a serious flu like illness.

It was only when Cath later gave blood that the HIV in her system was picked up when it was routinely screened. It was a blow.

“I hadn’t had children. I was single when I got this diagnosis. It was before I got around to settling down and the stigma surrounding it, well it stopped me from me having children.”

There is no treatment that can fully rid the body of HIV. Current treatments can effectively stop it in its tracks and can reduce the risk of a mother to child infection to just 1 or 2 per cent, states the Australian Federation of Aids Organisations.

“The day I was diagnosed, I said to myself I have to talk about this because although it’s incredibly difficult as a heterosexual female living with HIV, I have to put myself out there until the stigma ends.”

‘I WAS TOLD TO GET OUT OF TOWN’

And discrimination is rife: “It can be anything from someone dropping a ‘joke’ to the anonymous letter I received telling me that I wasn’t welcome here, I had chose to contract HIV and that I should get out of our town.”

Cath now lives in the mountains of north eastern Victoria.

People know her there, and her status, and have for the most part have accepted her.

But witness, she says, the recent slur against Kerryn Phelps, the newly installed MP for Wentworth. During her election campaign a rumour was bandied about that she had HIV and had left the race, a smear Cath calls “disgusting, I can’t believe someone would do that”.

Even now, decades after HIV emerged, Cath said some health professionals — particularly away from the inner city — were woefully ignorant of the condition.

People are diagnosed months late, she says, or aren’t made aware of treatments like PrEP that can shield people without HIV who think they may come into contact with the virus from acquiring it.

“When a women goes to a GP for an HIV test she shouldn’t be asked why she wants it, they should just give it to her. A GP in Darlinghurst knows what to say, but a GP in Koo Wee Rup, (a town in Victoria), has no idea.”

GRIM REAPER RETURNS

Cath wants more to be done to educate GPs about HIV and that someone with an undetectable viral load, where treatment has massively reduced levels of the virus, cannot pass it on.

She has launched an online petition to push for an education campaign with the same impact as the controversial 1980s “grim reaper” adverts to bring the message home to heterosexuals that HIV never went away and it’s not just transmitted through “bottom sex”.

Featuring a death like figure cutting people down with bowling balls, Cath acknowledges the ad has since been criticised for demonising those with the virus.

“I grew up with the grim reaper ads and it was effective at the time but it was stigmatising so let’s undo that stigma and get rid of all the myths.”

It doesn’t surprise her that HIV is rising among heterosexuals, Cath said: “The messaging continues to be targeted at a demographic (gay men) where rates are declining. That message has worked, so let’s hand the reins over to women, indigenous people, transgender people, to FIFO workers who take their r ‘n’ r in Asia.”

Of the new diagnoses among heterosexuals 61 per cent were in men, 15 per cent were from Sub-Saharan Africa and 13 per cent from Asia.

ZERO CHANCE OF PASSING ON HIV

Cath has found support through The Institute of Many (TIM) Women, an online space where stories are shared and questions answered.

“Women with HIV have specific requirements about engaging with peers”.

Nic Holas, the co-founder of TIM, said strategies to reach gay and bisexual men don’t work for everyone with HIV.

“Heterosexual women and men living with HIV are often far more isolated than their gay and bisexual counterparts, so TIM is a community in which they can come to for support, and also to remind gay and bi men living with HIV that we need to bring everyone with us as we redefine HIV for the 21st century.”

Cath says she has found a treatment that works for her: “One pill a day, no side effects and I had an undetectable viral load within a month. There is zero chance of me passing on HIV.”

But despite being well, sometimes it does catch up with her.

This World AIDS Day, she won’t head into the city to one of the various events to mark the occasion. Instead she’ll head to the country to see her horses.

“Sometimes I do feel lonely, I think about what could have been. Then I go out on my horse to the Bogong High Plains and up there it feels like there’s not another soul on earth. It’s beautiful”.

— World AIDS Day is an international day dedicated to raising awareness of the AIDS pandemic caused by the spread of HIV infection and mourning those who have died of the disease. For more information, visit worldaidsday.org.au.

— Continue the conversation with Benedict Brook at benedict.brook@news.com.au or on Twitter @BenedictBrook

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