Ontario’s massive mammogram backlog

Women’s College Hospital is helping underscreened groups get the care they need

Dawn Barker was watching TV one day in 2017 when she felt the lump.

“It actually seemed to have appeared out of nowhere,” she recalls.

“I couldn’t figure out what in the world was going on. Obviously it was a scary moment.”

Barker, who is now 50, went to a walk-in clinic the very next day, and from there her world changed. Test after test, a biopsy, ultrasounds, and eventually a devastating diagnosis: breast cancer.

For a few months at the start of the pandemic, breast cancer screening through mammograms was paused, and volumes have fluctuated with subsequent waves, to free up hospitals for COVID-19 patient surges.

Now, even as screening picks up again, there’s still a huge backlog, according to Ontario Health, with 300,000 people due for mammograms as of the end of June. And many among them come from groups, including Black women, that have historically been underscreened.

As the health-care system struggles to recover, Women’s College Hospital is trying to close some of those gaps, to make sure that women like Barker, who’s now an advocate for early screening in her community, don’t get left behind.

“We have a lot of screening to catch up on, because we want to make sure that if somebody is willing to be screened that they can be screened, in a very timely manner,” says Dr. Aisha Lofters, chair of implementation science at the Peter Gilgan Centre for Women’s Cancers at Women’s College Hospital.

The risk is that the gaps that were there before will be exacerbated by the interruption in preventative care, she said.

“We hope we can build back even better and recognize those gaps that were there before, and actively try to address them.”

Women’s College is fundraising for four new mammography machines and four new ultrasound machines, which will allow them to screen more than 1,000 more patients a year.

Staff are also hosting a special screening event in October, breast cancer awareness month, aimed at Black women, who will be able to get a Pap smear and/or mammogram (if they’re 50 plus) on site. They will also be offered taxi chits and TTC tokens for transportation.

“We’re trying to really make it a group event,” Lofters said. More of a “celebration of wellness and health,” with food and music.

“It can require a lot of time or require a lot of money to get to your health-care provider, especially if we’re hosting an event downtown,” she said. “We want to be mindful that people might need to travel to get to us, so we’re going to endeavour to provide transportation, whether that be parking or TTC, or taxi support, just again to try and reduce those barriers that we know exist to screening.”

There are several groups, she said, that are historically underscreened, including low-income women, women from Muslim-majority countries and transgender patients. One study from St. Michael’s Hospital found that transgender patients were about 70 per cent less likely to be screened for breast cancer, as it can be a “pretty gender-disaffirming situation to be having a mammogram,” Lofters said.

Ontario does not collect breast cancer screening rates by race, but data from the U.S. shows that Black women there are about 40 per cent more likely to die from breast cancer, if they get it.

Breast cancer survivor Leila Springer, the executive director of the Olive Branch of Hope, a GTA-based organization that offers support, resources and referrals to Black women dealing with the disease, said they “definitely” are an underscreened group. But it’s frustrating that more data on this is not collected in Canada.

“Cancer has been a taboo subject in our community for many years and still is,” she said. There’s still a lot of distrust in the health-care system, dating back to events like the Tuskegee syphilis study, where U.S. researchers denied hundreds of Black men treatment for syphilis for decades. Community organizations — “the ones actually talking to people” — are a key part of improving uptake, Springer added.

There is some local evidence that they can have a dramatic impact. According to a November 2021 study published in the journal Canadian Family Physician, an Afrocentric cancer screening program at the TAIBU Community Health Centre in Malvern — with focus groups to address fears around mammograms and a call-back system to check in with individuals due for screenings without mentioning cancer — led to a huge increase in breast cancer screenings. They surged to 72 per cent in 2018, from 17 per cent in 2011.

On top of other issues, Black and other women of colour also face the false perception that breast cancer is a “white woman’s disease” because a lot of the survivors who do go public are white, said Lofters.

“When women of colour are diagnosed they often can feel very alone, because they don’t see themselves reflected in any of those materials, campaigns, education, etc.,” she said.

One attempt to counter this is the website, “Every Breast Counts.” It’s a resource hub for Black women, featuring stories from survivors like Barker, launched in early 2022 and hosted by Women’s College.

In 2017 she was diagnosed with triple negative breast cancer, a form that disproportionately affects Black women, which lacks the receptors found in other types of breast cancer, making it hard to treat. Barker endured a surgery to remove the lump in her left breast, seven rounds of chemo, and then 25 rounds of radiation.

She is now cancer-free, and hopes that by sharing her story, she can encourage others, especially Black women, to take screening seriously, and advocate for their own health.

“The obstacles that Black women face are not limited to the anxiety and the mistrust of doctors, there’s a fear of being judged, social supports, child-care issues, transportation. Other challenges could be financial, being a one-parent home and worrying about caring for their child if they have a health crisis,” she said.

“Too many times we are not heard or seen.”

She herself had tried to get mammograms in her early 40s from her family doctor but was denied. (Mammograms are covered by OHIP and individuals do not need a referral if they’re between 50 and 74.) The Ontario Breast Screening Program recommends Women, trans and non-binary people aged 50-74 get one every two years, and high-risk individuals aged 30-69 get one every year.

The experience left Barker with a bad taste in her mouth, “disappointed and disheartened,” she said.

“Which is, I think, an experience that a lot of Black women face.”

Cancer has been a taboo subject in our community for many years and still is.

LEILA SPRINGER OLIVE BRANCH OF HOPE EXECUTIVE DIRECTOR