Pandemic deepens woes for HIV patients in Sask.
Agency workers fear a `devastating' setback in fight against the disease
Zoe was in a Saskatoon hospital being treated for HIV when the COVID-19 pandemic arrived in Saskatchewan. Within hours, her life fell apart.
The drop-in centres she visited for shelter, food and counselling closed.
She didn't know how she would pick up her medication the next day.
“I was too scared to get all my meds. And I started thinking, how was I going to get them? How am I going to live?” she said.
Zoe is one of thousands of people with HIV in Saskatchewan, where the transmission rate is twice the national average, and has been for years.
Front-line workers say the new public health crisis has overshadowed the old one, as the pandemic has highlighted the fragility of the safety net for people with HIV here. Agencies face what they call a “devastating” setback in efforts to stop the spread of the disease.
Postmedia has chosen to protect Zoe's identity because of the stigma surrounding HIV and the discrimination she and other Hiv-positive people face. Zoe said she has lost friends, been denied services and been the target of rude and aggressive behaviour when her Hiv-positive status has been revealed.
When the pandemic hit, she was whisked from the hospital to a care home where some residents were so afraid of COVID-19 that they wouldn't look out the window. After she left, she had nowhere to go. For the first time in years, she thought about doing drugs again, she said. “I felt like relapsing, but I didn't. It was hard, when that COVID crap started.”
In April, Cheryl Barton was desperately trying to find her people.
Barton works for the People Living with AIDS Network of Saskatchewan, a small drop-in centre in Saskatoon that works with clients who are mostly homeless or living in poverty with HIV/AIDS. It closed its doors during lockdown. When it reopened, not all of its clients came back.
“Trying to figure out whether everyone is OK has been really difficult,” Barton said. “We're talking about a population that doesn't have a cellphone, doesn't have internet, doesn't have TV. Everything is word of mouth on the street ... I don't know if some of these people overdosed and are no longer with us.”
Unlike anywhere else in Canada, intravenous drug use is the primary risk factor for getting HIV in Saskatchewan.
More than half of all people diagnosed with the disease in the province in the past decade also had hepatitis C.
Because HIV is so mired in drug use, many patients don't have secure housing or have compounding mental health issues.
“Many of them don't have transportation, they don't have a means of income,” said Vidya Ready, education co-ordinator at AIDS Program South Saskatchewan. “All these social determinants of health determine whether they stay on treatment or not.”
The virus is not a death sentence. Dr. Siddharth Kogilwaimath, an infectious disease specialist in Saskatoon, says treatment might consist of a couple pills a day. People with the virus can live long, healthy lives and can avoid passing it to others.
But many of the problems Kogilwaimath's patients face are outside the realm of medicine.
“What we see is that there's a lot of complexity going into this. If someone is homeless, how do we make sure we get their medications? If someone has addictions issues, how do we address that? Because until they deal with their addictions, how are they going to get their medication?”
From March to July, most addictions programs went online and people were asked to stay home — a luxury not everyone had.
“We know from research that people who do well in addiction, 30 per cent is due to human connection. So seeing the addictions physician or addictions councillor, or going to groups or meeting with their group,” said Westside Community Clinic physician Dr. Morris Markentin.
“People who had good urine screens 12 months ago, they're not as good as they were ... They've relapsed.”
The Saskatchewan Coroners Service hasn't released a monthby-month breakdown for overdose deaths this year, but says 230 people are suspected or confirmed to have died from overdoses in the first eight months of 2020, already more than any year prior.
Prairie Harm Reduction executive director Jason Mercredi said relapses contributed to that.
“We've lost so many people,” he said.
NUMBERS MAY NOT TELL THE STORY
Amid all that, the number of new HIV cases reported in the province appears to have fallen.
Preliminary data shows 118 new HIV cases were diagnosed in Saskatchewan between Jan. 1 and Sept. 24, or a rough average of 13.1 new cases per month.
Last year, there were 213 cases in a 12-month period (an average of 17.8 new cases a month), up from 163 in 2018 (an average of 13.6 cases per month).
Mercredi warns those preliminary data don't tell the whole story. Like many diseases, HIV has a window period between when an infection begins and when it becomes detectable. That means someone can become infected, but might not test positive until between four and 12 weeks after exposure.
“I know this population, and I know this is going to be one of the worst years for HIV on record,” he said.
If more people are using drugs with less access to support, then it's more likely that people with HIV aren't being identified, he noted.
Saskatchewan's provincial laboratory has been ramping up its HIV testing capacity for years. In 2019 it processed 93,832 tests, nearly double the 48,843 done in 2009.
But, in 2020, only 46,255 tests were processed in the first seven months of the year, which meant an average of about 1,200 fewer tests per month than 2019.
On First Nations, where the HIV rate is double the provincial average, Indigenous Services Canada's chief medical health officer Dr. Ibrahim Khan said nurses who track and treat diseases like HIV were diverted to COVID-19.
In 2014, the United Nations set 90-90-90 targets — goals that 90 per cent of people with HIV/ AIDS would be diagnosed, put on treatment and have their viral loads suppressed so they could not transmit the virus, all by 2020.
As of 2016, only an estimated 70 per cent of people in Saskatchewan with HIV/AIDS were diagnosed, and front-line workers say COVID-19 has made testing and tracing even harder.
Canadian Aboriginal AIDS Network CEO Margaret Kisikaw Piyesis said outreach vans that usually worked to contact trace people with HIV in Regina were temporarily halted. She's since heard of as many as 11 people in Regina testing positive for HIV in just two weeks.
“We won't get confirmed cases for a year's time. That's what it takes to get the statistics. But we know because we're at the community, at the grassroots level,” she said.
“The resources we had for HIV were eliminated, because they needed more resources for COVID. People who were most at risk for HIV, people who were injecting, there were agencies that were closing down, shutting their doors because of COVID.”
Katelyn Roberts is executive director of Sanctum Care Group in Saskatoon, which operates Sanctum 1.5, a home for Hiv-positive moms. In March and April, referrals to the 10-bed home dipped. Then, they rose.
“I've been working in HIV since 2011. I've never seen this many (HIV-) positive women at one time,” Roberts said.
The Saskatchewan Health Authority issued an advisory in September about rising reports of HIV in the province's east.
There are similar concerns about the status of hepatitis C. Lesley Gallagher, a nurse practitioner who travels between Vancouver and Saskatchewan, said the pandemic has reduced the already limited resources available for hepatitis C testing.
“Whatever headway we were making, I think we're seeing it moved to the back of the chart,” she said.
MORE THAN A PILL CAN SOLVE
Zoe survived her ordeal. But she's still homeless, and still at risk of relapse.
She and advocates say the last few months are proof that treatment alone can't solve Saskatchewan's HIV epidemic.
“A pill can't fix this. There's so much more that needs to happen,” said Kisikaw Piyesis, who has been an advocate for people with HIV since the 1980s.
Saskatchewan's spending on HIV, especially treatment, is rising. HIV medication costs as much as $20,000 per person per year and, in 2018, provincial drug plans covered 91 per cent of the $10,621,319 cost associated with those treatments. Hepatitis C medications cost $22,988,242 in the 2017-18 fiscal year, of which more than 98 per cent was paid by the province.
Advocates argue less money would be needed for treatment and emergency care if funding were allotted for front line Indigenous-led organizations. More than three-quarters of people who tested positive for HIV in 2018 self-declared Indigenous ancestry, according to the Ministry of Health, but Barton and Kisikaw Piyesis say relatively little money goes to Indigenous-led organizations like their own.
“The minister and his officials need to sit down and listen,” Barton said. “There's no sense in having more addiction beds if people are dead from overdose, street drug use. HIV is mired in that.
“Things need to be built by Indigenous people for Indigenous people, based on their life experiences and their cultural and spiritual beliefs, and based on what they know will work.”
Postmedia asked the Sask. Party and the Saskatchewan NDP what they would do to curb rates of HIV if they win this month's election.
Sask. Party candidate Jim Reiter, who most recently served as health minister, pointed to his government's work at funding treatment and needle exchange services. But he would not say if another Sask. Party government would fund safe consumption sites, like the one opened by Prairie Harm Reduction in Saskatoon in October.
NDP candidate Vicki Mowat, who most recently served as Opposition critic for health, said her party would fund that site, and argued a new strategy for HIV is needed.
Markentin, whose clinic serves a large number of Hiv-positive people in Saskatoon, said the reason the province hasn't made great strides against the disease is because it's rooted in poverty, for which there is no obvious cure.
“Until we get rid of poverty, until we get rid of stigma, we can't win.”