Loneliness, isolation among struggles of Saskatchewan HIV patients
While the recent HIV epidemic in Saskatchewan has made headlines - the rate of annual new infections is at least twice that of anywhere else in Canada on a per capita basis - people on the front lines attribute the startling rate of infections to larger and more systemic problems such as poverty.
When Ken Ward was diagnosed with HIV in 1989, he initially told everyone that he had cancer because “it seemed a lot more acceptable.”
“Being an addict, we deal with loneliness no matter what,” said Ward, who is from the Enoch Cree Nation west of Edmonton, Alta. “But also being double-impacted with the diagnosis, I knew that I had to keep this secret quiet because of fear. Fear of not being accepted, or [of being] targeted... Trusting has always been a big issue with me, ever since I was molested in a residential school and raped at 13.”
However, after his mother accidentally leaked his HIV-positive status to organizers of a rally in 1990, Ward went public with his diagnosis. He has spent the last 20 years doing advocacy work for HIV and AIDS patients in Canada, and was one of the first aboriginal men in Canada to go public about his diagnosis.
Struggling with addiction for almost 20 years, as well as being molested and bouncing through various foster homes, Ward has lived through many of the experiences that are disturbingly common among Canada’s First Nations population.
“I think three quarters of my family were dysfunctional, mostly alcoholics,” Ward said.
As with so many others in Canada and especially in Saskatchewan, drug use led directly to Ward’s HIV diagnosis: he was infected by a shared needle. This is fairly typical of Saskatchewan’s infection trends, says Dr. Stephen Helliar, who has worked at the Westside Community Clinic in Saskatoon for 31 years.
“There is some sexual transmission,” he said, “but by far the largest number [of those infected] are injection drug users.”
Working among Saskatoon’s poor and homeless communities for three decades, Helliar has seen the current epidemic develop firsthand. And while he confirmed that the vast majority of new cases are among drug users, he says the larger community should be aware of the high infection rates around them.
“In 2007, we had roughly maybe 30 people who were HIV positive at the Westside [Clinic]; we now have somewhere around about 340 to 350,” he said. Helliar personally sees about 100 of those patients.
When asked about what he sees as the causes of Saskatchewan’s HIV problem, Helliar stressed the fact that HIV “has become a disease of poverty” and other similar social determinants of health, such as housing and addiction. Thus while it is true that there are a disproportionately high number of aboriginal people in Saskatchewan being infected, this is due to the fact that aboriginal people are disproportionately affected by poverty.
“I think the first thing [the government] needs to do is work on the whole issue of poverty and try to relieve that,” said Helliar, “and the housing situation and relieve that, as well as putting in more human resources to deal with HIV.”
The provincial government is in the process of implementing a four-year strategy to deal with HIV; its four focal points are education, prevention and harm reduction, research, and clinical management. The main goals of the strategy include improving life and housing for current HIV-positive people; working to prevent both addictions and new HIV cases; and to reduce the stigma and isolation HIV-positive people experience, both in life and, most importantly, in the medical community.
“They’ve certainly increased the number of health workers that are working with this issue,” Helliar said. “And so in that way it’s helped, but we are still being overwhelmed by this problem. Yes, there has been an improvement, but it’s certainly not enough.”
Both Ward and Helliar acknowledged the prejudice that many members of the medical community still hold toward HIV patients. Ward says loneliness and isolation are among the most difficult things for people to deal with when they are diagnosed.
“I’m really pleased that the nurses are now coming to the forefront and wanting to understand, because they’re usually the welcome mats [for] anybody who’s diagnosed,” said Ward.
Still, he says, more needs to be done. Child and family services, correctional workers and more medical professionals all need to receive thorough education to combat prejudice.
Helliar echoed Ward’s concerns. Many health care workers, he says, either don’t want to treat HIV-positive patients who are addicted to drugs or don’t put forth the effort to make the patients feel welcome.
“They’re certainly made to feel that they’re not wanted there.” The key to changing this, Helliar says, is education. “Try and get people [in the medical profession] to understand why people become addicted, and that people, even if they have an addiction problem, are human beings and need to be treated with the same respect that you would treat any person.”
Another key problem that goes hand in hand with both injection drug use and the over-arching problem of poverty is homelessness. Ward hinted at having led a very transient lifestyle earlier in his life, saying he had been “what you might call a ‘gypsy.’” From residential schools and foster homes to his younger adulthood, Ward “just migrated from city to city most of my life.”
Helliar says this is also typical of many patients he sees, and is a huge impediment to treating patients properly. Whether it be diabetes or HIV, chronic illnesses are significantly harder to treat when the patient does not have a stable, consistent home to return to.
“HIV in general has become a disease of poverty,” Helliar said, “and the vast majority of the people that live in poverty are more likely to get HIV. Our aboriginal community lives in poverty, and therefore First Nations people are certainly a large percentage of the people that we see that are HIV positive.”