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Distrust of health services a critical barrier to reducing HIV toll upon indigenous peoples globally

In the lead up to AIDS 2014 in Melbourne next year, Maori public health researcher Clive Aspin reports on the lessons from a large international gathering of indigenous peoples affected by HIV that was recently held in Canada.

***

Getting HIV to zero: Canada leads the way

Clive Aspin writes:

When it comes to HIV and indigenous peoples, Canada is way ahead of everyone else, in more ways than one.

Canada’s lead position was on full display recently when the Canadian Aboriginal AIDS Network (CAAN) convened their tri-annual Wise Practices Conference.

The meeting took place on the land of the Treaty 6 Cree and Dakota Nations (Saskatoon, Saskatchewan) and brought together Inuit, Metis and First Nations peoples from throughout North America as well as a number of Indigenous delegates from Australia, Bolivia, New Zealand and Mexico.

This was the fourth Wise Practices meeting and with over 200 national and international delegates, it counts as one of the largest international gatherings of indigenous peoples affected by HIV in the world.

That’s certainly worth celebrating and something of which CAAN can be justifiably proud. The level of community support for the work of this community-based AIDS organisation was clearly on display. Their ability to bring together so many indigenous peoples from all walks of life is to be commended.

And on top of that, people of all ages were well-represented. From elders to youth, there were representatives of the whole indigenous lifespan and experience, providing testimony to the fact that we are all affected by HIV, no matter what our age.

But more importantly, each and everyone of us has a role to play in finding a solution to the HIV crisis and bringing HIV infections to zero, the over-riding theme of the conference. From the elders with their wisdom to the youth with their innovative ideas, everyone has a role to play in preventing the transmission of HIV and providing care and support to those members of our communities who are living with HIV.

In keeping with the UNAIDS themes of zero infections, zero discrimination, zero AIDS related deaths, the theme of this meeting focused on the role of research in getting to zero.

But it was made clear that this theme may not be realistic or even acceptable to indigenous peoples, especially since it includes a commitment to universal testing and treatment.  As one delegate said, “We are indigenous peoples. We don’t want to be indigenous peoples on medication.”

And therein lie serious problems for indigenous peoples. Unless health services change, indigenous peoples will continue to test late or not at all. Already, we know that indigenous peoples at risk of HIV in some countries are more likely to test late for HIV than their peers.

Barriers to testing such as distrust of health services, discrimination and stigma will have to be broken down if this is to change.

And while medication might be part of the solution for some people, anti-retroviral treatment (ART) still has serious limitations. Apart from being expensive and having potential side effects, ART also requires people to be rigidly adherent in order to be effective.

And most importantly, the social determinants of indigenous health that drive indigenous health disparities must be addressed as a matter of urgency if we are to get HIV infections to zero. Unless these are addressed, HIV will continue to affect indigenous communities at greater rates than everyone else.

So long as indigenous peoples continue to be marginalized from decision-making and deprived of resources and information, we will continue to see disproportionately high rates of HIV among Indigenous populations.

Respectful research partnerships vital

The community-based approach to research provided answers to overcome some of these problems.

Overwhelmingly, delegates at Wise Practices IV emphasised the need for researchers to engage in meaningful and respectful partnerships with communities.

And there was much agreement that Indigenous researchers are best placed to do this.

Throughout most of the HIV epidemic, non-indigenous researchers have conducted research that has contributed to the perception that indigenous peoples are diseased, at risk and in need of rescue.

And still significant HIV disparities persist.

As we consider a future where HIV affects all segments of indigenous life and experience, it is imperative that this change. Delegates at Wise Practices agreed that indigenous peoples and communities need to frame and drive the HIV research agenda.

Visioning Health is one example of Aboriginal women taking control of research activities and finding solutions that meet the needs of indigenous women living with HIV. The project focuses on aspects of women’s lives that provide them with protection against HIV rather than what places them at ‘so-called’ risk. And by engaging with HIV positive Aboriginal women the project has made a significant contribution to the building of Indigenous HIV research capacity.

[youtube]http://www.youtube.com/watch?v=sX1WY0FALmQ[/youtube]

An energized and vibrant Indigenous HIV research workforce is going to be fundamental to overcoming HIV in the future. Many of the people at Wise Practices IV are part of that workforce and they will need to have access to ongoing support and mentoring to meet and overcome challenges of HIV in the future.

For Canada is leading the way in another area of the HIV epidemic and that is in the rates of HIV diagnoses. Canada has inordinately high rates of HIV among Inuit, Metis and First Nations peoples that far surpasses those in countries such as Australia and New Zealand.

These three countries share much in common with regard to indigenous populations, health disparities and HIV. Similar experiences of colonisation, marginalisation and dispossession have contributed to significant health disparities in all three countries.

But when it comes to HIV, the disparities between indigenous and non-indigenous peoples in Canada are stark and way ahead of those in the other two countries. A study that compared standardised rates of HIV diagnoses in the three countries found that Canada’s rates were almost 200 per 100,000 compared with about 50 for Australia and slightly less for New Zealand.

Already, Canada has major challenges dealing with the impact of HIV on indigenous Canadians and these challenges are likely to intensify as rates of HIV diagnoses continue to increase.

Canada’s example also provides salient lessons for Australia, New Zealand and other countries with vulnerable indigenous populations.

The lead up to AIDS 2014 in Melbourne in July next year provides opportunities to reflect on these lessons and apply them to national and international initiatives to prevent the transmission of HIV among indigenous populations.

• Clive Aspin (Ngati Maru) is a Maori public health researcher with extensive experience of Indigenous health research in Australia, Canada and New Zealand.

 

 

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