If I had stayed in Zimbabwe, it is likely I would have died
When poltical harassment and violence forced Viola to escape her home country of Zimbabwe, she had little choice but to leave her son and daughter with their grandparents and hope that one day they would reunite.
Arriving in China, she soon realised that the country was unlikely to grant her political asylum. But all was not lost. She met a Nigerian man and fell in love. And together they set off for Australia.
Viola and her partner sought asylum here and as part of the immigration requirements underwent HIV testing in Melbourne. It was then that Viola found out she was positive.
Normally, HIV has a negative impact on any visa application, but our government was convinced that if Viola returned to her home country she wouldn’t have access to treatment and her life would be at risk. So, on these grounds she was granted permanent residency.
Viola and her partner married; and under the Special Humanitarian Programme she applied for her children to join them. It was then that her 12-year-old son also tested HIV positive.
She had suspicions she might have HIV when the children’s father died from AIDS several years before; although they had separated before the birth of her son. So, now it was clear she had been positive since at least before he was born. Fortunately, her younger daughter escaped contracting the virus.
A lot of stigma surrounds HIV in Zimbabwe. Before Viola left, she had heard gossip about so and so looking ill or someone else losing weight. Even her mother had expressed negative views about people with HIV; but she was not surprised when told the news about her grandson. He was always unwell and prone to infections.
"My father was in very poor health, so telling him was much more of a worry," reveals Viola. So her new husband talked to him for her, reassuring him that he would look after Viola and her two children if they came to Australia. Three years later, after a difficult legal challenge with the immigration authorities, the family was finally reunited.
Her son is aware of his status and "accepts it without any fuss," Viola says. "He takes his medications every day without fail and is now a hundred percent healthy." Viola’s son is on Atripla and has had no problems whereas she experienced a year of depression and weight loss on the drug. "Probably because it contains efavirenz," she says. "Finally, my doctor agreed to change me to another regimen."
Viola has received excellent care from doctors in Australia, with the exception of one GP who admitted he "knew nothing about HIV’. She has a case worker with the HIV CALD Service at the Alfred who helps her access services. She also attends dinners held by Positive Women Victoria where she has met other positive mothers, including some from African countries who have become supportive friends.
Wary of disclosing to people in Australia, Viola has been advised that her son’s school doesn’t need to know. "Many Australians don’t know enough about HIV," she says. To date she has only ever seen one HIV message on a tram and that was quite recently. But she is grateful to be living in this country. "If I had stayed in Zimbabwe, it is likely I would have died," she says sadly. "Only a small number of people are on treatments and it is often only those with enough money to bribe officials who get them."
My level of understanding about HIV was minimal when I came to Australia
Until he migrated to Australia in 2006, Sanjeev remembers very little mention of HIV in Malaysia. In a country where being gay is still a social and religious taboo, he recalls even less about its particular threat for gay men.
"As a child I recall my mother telling me not to bring home a rather 'camp' school friend I’d made," says Sanjeev, whose Indian background he describes as religious and very conservative. "She didn’t think he was the sort of person our family should mix with. So to this day, I have never broached the subject with any member of my family."
Sanjeev is still working on how out he can be about his sexuality, even in a more accepting society like Australia. "When I found out I was HIV positive in 2008, it added to the secrecy I carry around with me and to the level of stigma I feel," he says.
Sanjeev has not had any sex since his diagnosis because he can’t bring himself to go through any sexual negotiation around his status. He also has "a few trust issues" as he felt deceived during the episode when he became positive.
"My level of understanding about HIV was minimal when I came to Australia," he says. "I knew you could pick it up through sexual intercourse and that you couldn’t catch it from kissing and casual contact." But he didn’t have any deeper understanding about the relative risks of contracting HIV.
Sanjeev has found it difficult to talk to anyone about his status, even within his friendship networks. "I am a very private person," he says. "My Indian grandmother had a great influence on me. She taught me to keep your feelings to yourself and to respect the social standing of your family by not sharing too many personal details."
His greatest confidante has been his doctor in Melbourne who has taken excellent care of him. She guided him through a bumpy introduction to antiretrovirals where it took three regimens to get things right. "She also recommended that I adopt a gradual approach to telling others,’ says Sanjeev, ‘even to the amount of involvement I have with HIV agencies and the like."
Even so, Sanjeev has found attending a seven-week peer support course at the Positive Living Centre in Melbourne a highly valuable experience. "I felt safe there. I could say things without being judged or told: 'It’s wrong to think that'. Being able to speak my mind on these issues was a great thing for me."
These days, Sanjeev volunteers for an HIV agency. But until he decides where he stands on the issue of sex as an HIV-positive gay man, he is taking his time deciding who to tell about his status.
Now it is not such a big deal to be positive
In 1990, Dachasa visited his doctor in the town where hw was living in Ethiopia. He was diagnosed with pneumonia, treated and recovered, but was never told at the time that he had also been tested for HIV and that the result was positive.
Five years later, when attending the same clinic, he was finally told the news. He was annoyed as he might have taken extra precautions with his health to preserve his immune system.
Now he had a CD4 count of 52.
But there was hope on the horizon. New treatments were being developed and he decided to take part in an access campaign in his country to try to get treatments for other people with HIV.
It was 1996 and the Global Fund had started funding organisations to educate their fellow Ethiopians about HIV.
Dachasa joined a group called Dawn of Hope and went out into the community to talk about how HIV could be prevented and the importance of getting tested. He even spoke to the media to try to de-stigmatise HIV and to make people aware that it was possible to live well with HIV, and that the new treatments provided hope for the future.
Countries such as Ethiopia needed a lot of help to control their epidemics, so a group of Ethiopian doctors in North America arranged for a small clinical trial to show the government how well these new treatments worked. Dachasa was one of the first in his country to be put on treatment, his CD4 counts quickly increased and he looked and felt much stronger.
But it didn’t convince the Ministry of Health to respond with a mass rollout.
Ethiopian HIV activists, including Dachasa, then started to attend World AIDS Conferences, and to speak about the lack of treatment in their country. They encouraged the Director of the Global Fund and UNAIDS to come to Ethiopia and convince the government of the need to provide treatments to as many people as possible.
"There was much HIV stigma and fear in Ethiopia at the time," says Dachasa. Positive people and their families were routinely excluded from community events. But treatments and HIV awareness campaigns made a big difference. "Now it is not such a big deal to be positive. People are no longer scared to go to the doctor for fear that people in the clinic will spread the news," he says.
Given the political difficulties in his country, Dachasa sought asylum in Australia and was accepted in 2007. He was pleased that the form said that if he was HIV positive, it would not affect his ability to be accepted. However, when he applied for his wife — who is also positive — and his son, their application was initially rejected.
Dachasa is grateful to the Asylum Resource Centre in Melbourne. It is Australian government policy to reject applications from most HIV-positive people first, they told him, before helping him with the appeal process which ultimately reunited him with his wife and son.
They arrived in 2011, and the family have since set up home in a comfortable public housing flat in inner Melbourne. Dachasa and his wife receive excellent care from the Melbourne Sexual Health Centre who assisted them to conceive and give birth to a healthy baby.
Dachasa worries about the level of understanding of the virus amongst fellow Ethiopians living here. He is hesitant to mention his HIV status to other community members at the church he attends. "It’s best to talk about other things," he says.
These three stories show how well some HIV-positive people from culturally and linguistically diverse (CALD) backgrounds are able to navigate the health system in Australia; and how they have managed to maintain their health as a result. But we know from the research that people from CALD backgrounds often experience poorer health outcomes than other Australians. This is also true for HIV; where CALD are more likely to present late with an AIDS-defining illness often because neither they nor their doctors could imagine that they were even at risk 1.
Maureen Plain, Coordinator of the Alfred Health HIV CALD service in Melbourne, says there is a need for better awareness campaigns. "Some of the positive people who come to my service have so little understanding of even the basics of HIV. They don’t know the difference between HIV and AIDS, the role of treatments or where to get help," she says. "Many believe that they will die because they have seen this occur many times in their own countries. there is a lack of information provided in their home countries and the subject is not being talked about in their communities here."
Maureen maintains that many are so scared that other members of their community will find out their status that they will go to extraordinary lengths to conceal the fact. Some will not even accept a translator for fear the news will spread. Clearly, some broad-based campaigns within the various CALD communities are necessary to educate and address the stigma and discrimination that still exists.
1.A. Asanie et al. understanding late HIV diagnosis among people from culturally and linguistically diverse backgrounds, National Centre in HIV social research, Sydney, monograph 7/2009
Images from top:
An example of ancient wooden statuary from the Shona people of Zimbabwe. Photo:ARTIST-UNLIMITED
Detail of wall decoration from the Batu Caves Hindu shrine near Kuala Lumpur, Malaysia. Photo: SIMON GURNEY
A man walks past a barbershop in the southern Ethiopian town of Arba Minch, located about 500km south of the capital, Addis Ababa. Photo: J CARILLET