It’s a tale of two epidemics. The virusA small infective organism which is incapable of reproducing outside a host cell. may not discriminate between race, colour or gender, but cultural and economic differences can mean that Aboriginal and Torres Strait Islander people — and their communities — experience the HIV epidemic in markedly different ways to other Australians.
While the number of Indigenous Australians infected with HIV remains relatively low, these communities still face the real risk of a worsening epidemic.
There are important differences in the makeup of the epidemic among Indigenous people, too. In contrast to the wider community, where the majority of HIV-positive people are urban gay men, HIV is more likely to affect Aboriginal and Torres Strait Islander women, heterosexuals, younger people and those living in rural and remote areas, as well as gay men and sistergirls.
Providing support to Indigenous positive people, and advocacy on their behalf, the Indigenous Positive Network (IPNIndigenous Positive Network. Now known as PATSIN (Positive Aboriginal Torres Strait Islander Network).+), a national organisation which aims to represent Aboriginal and Torres Strait Islander people living with HIV/AIDS, will mark its first birthday in June.
The anniversary comes at a challenging time for Indigenous people: just two years ago, new infections from heterosexual transmission exceeded those from male-male sex for the first time. Injecting drug use also makes up a larger share of HIV infections among Indigenous people.
The establishment of a dedicated Indigenous PLWHA body is an important step, IPN+ co-convenors Clyde D??Bois and Michelle Tobin told PL.
The main focus of the network is to provide Indigenous positive people with the skills they need to speak out within their own communities.
“To be taken seriously … it’s better to come from someone they see as one of their own, from their own community,” Clyde explains. “We’re there to help empower and facilitate the growth of those individuals to go back into their own community to do that.”
With many Indigenous people reluctant to access mainstream health services, Michelle says it’s important that advocacy and support services are also targeted appropriately.
“It’s really important to actually have a voice for them,” she says. If that support comes from within the Indigenous community, there’s a greater likelihood that positive Indigenous people will respond to it.
Cultural differences can create major obstacles, both to Indigenous positive people and to service providers and advocacy groups.
“There’s so many different culture clashes that we deal with, especially language,” Michelle says. “One community can speak one type of language, another can speak the same, but the meanings are different.”
Cultural taboos around gender relations can have a major impact. Education materials which might be culturally appropriate in Western society can often cause offence in Indigenous communities. A poster which depicts male and female genitals, for example, will isolate the female section of the community, “because they’re not allowed to look at it or deal with it,” Clyde explains. Likewise, dealing with doctors or health workers of the opposite gender can create barriers.
Even the most basic healthcare information needs to take account of the differences, Clyde explains. “It’s OK to say, ‘take your medication if you’re HIV-positive’, ‘eat healthy’ and stuff like that, but when you’re in a remote community … you don’t have fresh vegetables.”
Poverty, too, creates major obstacles to positive Indigenous people. Many remote Aboriginal communities have almost “third-world” living standards, and it’s important to deal with underlying problems such as alcoholism and sexual abuse, the pair say.
One area where IPN+ believes it can make a big difference is in increasing levels of health literacy and understanding of medical information around issues like side effects and treatments.
“One of the harder things we’ve come across is actually getting Indigenous people to come in and be tested, regardless of whether it is for HIV or another STD,” says Michelle. Even among those who do agree to be tested, many will not return for test results or treatment. By going into Indigenous communities as Indigenous positive people, IPN+ hopes to improve acceptance of the usefulness of treatment for HIV.
Studies of HIV treatments and side effects take too little account of racial differences, with Indigenous people sometimes experiencing different treatment side effects to other people. Michelle tells the story of one man whose skin became darker after taking HIV antiretroviralsA medication or other substance which is active against retroviruses such as HIV.. “That’s something that’s new to us, but we don’t know how to address that; we don’t know what to do about it,” she says.
IPN+ had its first meeting in Adelaide in June 2003. Since then, the network has recruitedThe act of signing up participants into a study. Generally this process involves evaluating a participant with respect to the eligibility criteria of the study and going through the informed consent process. a ‘core membership’ of 13 Indigenous positive people who have ratified the network’s terms of reference. At the National Association of People Living With HIV/AIDS (NAPWHA) conference in Cairns in October, the group was endorsed as an associate member of the association.
As a young organisation, IPN+ is still finding its feet and developing its own capacity, but that doesn’t stop them from having big plans for the future. The network hopes to establish local groups in different parts of the country, and to work on a broad program involving policy development, advocacy with various levels of government, education and peer support.
The next stage for IPN+ is to develop a wider membership base, involving Indigenous people from across Australia. Indigenous positive people who are interested in becoming involved should call the NAPWHA office on 1800 259 666.