Support needed on and off reserve for people living with HIV/AIDS
Rene Boucher knows how difficult it is to live with HIV in a small community.
In 1993, after being diagnosed HIV positive, Boucher returned to his home of Sioux Lookout to try and figure the next steps in his life. But he quickly realized that his return was not a normal homecoming – and that living with HIV poses more challenges than simply dealing with the illness.
“People thought I’d be spreading it around town,” Boucher reflects. “There was a big stigma against people living with HIV, a fear of HIV spreading, and people felt unsafe.”
Much of the fear Boucher faced from others was based on ignorance, on people not knowing what HIV was and not being able to put themselves in his shoes.
And while some of that ignorance has faded in the 20 years since then, as public understanding of the disease has grown, much of it remains today, as bad as it was when Boucher was first diagnosed.
“Over the years it has gotten a little bit better, but not a whole lot,” Boucher says. “The stigma is still the biggest thing today. It is still very prominent in many communities, there is still this fear that comes from people thinking they can catch HIV very easily.”
But the stigma is only one of the many challenges people living with HIV face, especially in remote First Nations. Access to medication also poses a huge challenge, as does a lack of culturally appropriate services and jurisdictional issues between federal and provincial funding for First Nations people.
Those issues and many more are on the agenda when the second annual summit of First Nations and Aboriginal people living with HIV/AIDS takes place in North Bay Mar. 4-6.
The summit will bring together upwards of 25 Aboriginal people living with HIV/AIDS, including at least eight people living on-reserve in northern Ontario, to discuss care, treatment and support options.
Boucher said the organizers originally wanted to focus on people living with HIV/AIDS on reserve, as they face some of the most difficult challenges, especially related to accessing medicine and health services in a remote location.
In 2005 when the idea for the summit first came up, there were essentially no services for people living on reserve with HIV/AIDS, Boucher said.
“We really wanted to start the conversation on what do I have in my community, what do I need and where are the gaps,” Boucher said.
“But we realized we were going to have to look at off reserve care also. Many of the people had no choice but to move off because there wasn’t support or services for them.”
Last year’s summit was the first of its kind in Ontario, a province where services and programs specifically for Aboriginal people living with HIV/AIDS remain limited. Boucher said the summit was a success, especially given that the Anishinabek Nation passed a resolution soon after the summit, calling on the organization to include people living with HIV/AIDS when it works on items related to those populations.
Boucher hopes this year’s summit will push the issues even further along as the organization continues its struggle to have people living with HIV/AIDS recognized for what they are – people fighting a disease, no different than those fighting other life threatening diseases such as cancer.
He would like to see other First Nations governments, such as Nishnawbe Aski Nation, pass similar resolutions as Anishinabek Nation. He would also like to see better connections between services provided in urban settings and services offered on reserve. And he would like First Nations communities to provide safe spaces for their members living with HIV/AIDS to return home, and the help they need to fight the disease.
But most of all Boucher wants to continue addressing the stigma around HIV/AIDS. He says there are still too many people who are afraid to disclose their illness to their communities, for fear they will be shunned or asked to leave.
The result of the stigma, Boucher said, is that people are dying from AIDS instead of getting medication that could save them.
Meanwhile cases of HIV are going unreported because people are too scared to get tested, creating a potential major public health problem, especially in a region where Hepatitis C rates are on the rise.
What is needed, Boucher said, is for everyone to think about what kind of support they would want if they were diagnosed with HIV.
“Ask yourself, what if it was me?” Boucher said. “How would I want to be treated?”
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