TORONTO — While cervical cancer screening is a routine part of health care for Canadians, many fall through the cracks.
Robby Mukonjero, a 63-year-old who moved to Canada from Kenya in 2023, had never been screened for cervical cancer until she took part in a HPV self-sampling study in Toronto last spring.
Mukonjero heard about the study through Pasan, a community-based health organization that supports people who were previously incarcerated. A short instructional video showed participants how to collect the sample: insert a soft swab into the vagina for 30 seconds and then place it in a tube that’s sent to a lab for testing.
Before taking part in the program, Mukonjero didn’t have a family doctor and didn't know about routine cervical cancer screening.
She followed the instructions in the bathroom at Pasan and the results came back negative. “It was easy,” she said.
In Ontario, the latest available data shows cervical cancer screening rates steadily declined over the course of a decade, dropping from about 67 per cent in 2007 to 2009, to 54.5 per cent in 2019 to 2021. In B.C., the numbers show a similar pattern.
Among marginalized groups, the rates are even lower — in Ontario, screening within low-income neighbourhoods fell from almost 60 per cent to about 48 per cent in the same time periods.
That's far from the national target of 90 per cent by 2030.
As provinces across Canada change their main method of screening from the Pap smear to HPV testing, which better detects the virus that causes cervical cancer, experts say it's an opportunity to help address barriers for people such as racialized immigrants and refugees, Indigenous people, members of the LGBTQ+ community, as well as sex workers and former prisoners.
And they say recent studies show making self-testing kits available can help address those disparities.
Mukonjero had sought asylum in Canada after enduring torturous stigma in Kenya for being HIV positive, and for being an ex-prisoner after serving time for a 2000 assault conviction in Nairobi.
"When you are you are an ex-prisoner, you are (seen as) a thief. When you are HIV positive, you are (seen as) a prostitute," she said about the prejudices she faced.
The study, conducted by Mandana Vahabi, involved 84 people who either had never been screened for cervical cancer, or hadn't been for several years.
The results, published in Current Oncology in December, showed 88 per cent of participants chose the self-sample option and one third tested positive for high-risk HPV, the primary cause of cervical cancer. When human papillomavirus goes undetected, it increases a woman's chance of developing advance-stage cancer.
Vahabi's research found offering self-screening kits to sex workers and former prisoners – who are some of the most under-screened populations in Ontario – broadened the reach of cervical cancer screening across the province.
“If it's going to be found at the earliest stage, so many women's lives are going to be saved. That's the benefit that it’s going to have,” Vahabi, a full professor at University of Toronto’s faculty of nursing, said.
Her next study will make self-sampling kits available to 300 people in Ontario who face the same obstacles, with recruitment set to start in a few months.
But Mukonjero said the kits should always be available. "Some people don't know about it," she said, speaking about routine screening. "You should educate people."
Like her, half of the participants involved in the study did not have a family doctor.
Some said they felt uncomfortable or judged disclosing their sex work or criminal history to a health-care provider, and others relied on walk-in clinics that they did not feel addressed their concerns or conducted followups.
At the community health clinics Mukonjero went to until she recently found a family doctor, she said screening was never brought up.
Self-testing is now used in British Columbia, and considered just as accurate as tests collected by a health provider. Data on participation rates for its first year of the program is not yet available, but a spokesperson for the ministry says more than 60,000 self-screening kits were mailed to patients between February and June 2024.
Similar plans are underway in New Brunswick, Nova Scotia and Prince Edward Island. Self-testing isn't widely available yet in Alberta, Ontario and Manitoba, but trials are taking place to determine how to integrate it into long-standing screening programs.
A spokesperson for Ontario Health said they are taking a phased approach, beginning with pilots at 10 primary care sites later this month.
The HPV test that replaced the Pap test in Ontario last week still involves inserting a speculum into a patient's vagina to swab their cervix, which Vahabi said can be triggering for people who have a history of sexual or medical trauma.
“The whole process where you have to open your legs and then a cold instrument is going inside. It really reminds (them), for example, if they have been raped or they have been abused,” she said.
In Canadian prisons, health-care access is limited and routine testing may not be prioritized or resources may be insufficient, Vahabi said. After release, people with a criminal record may be more focused on finding housing and employment over seeking preventive screening, she said.
This goes for ex-prisoners who come to Canada, too, said Susan Shumba, a women's empowerment and resilience coordinator at Pasan.
“They are trying to focus on all other things settling in Canada. They have no doctors as well, no family doctors. So for them to know about the information around screening, it's not easy. There is not enough awareness for the marginalized folks.”
Jenna Hynes, director of case management, parenting and drop-ins at Maggie’s Toronto, a non-profit that supports sex workers, helped participants navigate the next step – a Pap test – to determine if their HPV infection is high-risk and likely to cause cancer.
To navigate fears and discomforts with the speculum exam, Hynes connected participants with doctors at a clinic with an anti-trauma approach. She also offered to go with them to the appointment.
“If they need somebody in the room to advocate for them, if they need somebody in order to witness, if they need somebody in the room, even just to be another person they can lean on emotionally – we offer that service,” Hynes said.
Still, she said it’s frustrating the self-sampling kits aren't available across Ontario.
“(It) gives the gift of autonomy."
This report by The Canadian Press was first published March 12, 2025.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Hannah Alberga, The Canadian Press
