Many aspects of healthcare access in Canada are based on where you live. Access to genetic testing for hereditary cancer is no exception. To assess and illustrate this, we reached out to our community and spoke to five women to map where they would and would not be eligible to access genetic testing in Canada in the present day.
We asked these women about their personal and family health history based on the genetic testing eligibility criteria of provinces and territories (PTs) that had this information online and publicly available. In focusing on just public information that is online, we recognize that our findings are based only on this information. In other words, a PT might have eligibility criteria that can be gotten from a genetic counsellor but not posted online. We choose to focus on just online information because many people get their health information online and we wanted to reflect what individuals can find out about their own access.
Specifically, Manitoba, Newfoundland and Labrador, Northwest Territories, Nunavut, and Saskatchewan do not have publicly available information online on how a person may be eligible to access hereditary cancer genetic testing. Therefore, this series comments only on eligibility access in Alberta, British Columbia, New Brunswick, Nova Scotia, Ontario, Prince Edward Island, Quebec and Yukon.
It is also important to note that Yukon Territories uses the same eligibility criteria as British Columbia, while New Brunswick, Nova Scotia, and Prince Edward Island share the same eligibility criteria.
In the first articles of this series, we spoke to Mykah Obrigewitch. Today, let’s meet Rebecca Dahle and explore where she may or may not be eligible to access genetic testing for hereditary cancer in Canada.
About Rebecca Dahle
Rebecca is currently 45 years old and lives in Waterloo, ON. Rebecca had discovered a lump and went to her family doctor. She was told that everything was fine. Little more than six months later, she was diagnosed with stage II, triple negative breast cancer in 2018 at the age of 39, when she was 18 months post-partum. Her mother had been diagnosed with hormone receptor positive (HR-positive) breast cancer two years before, in 2016, at the age 60. Her mother passed away at age 62.
While she was in treatment, Rebecca discovered she carries the BRCA1 mutation. It took a long time to get tested and receiving results was an issue. It took months and threw a wrench in her treatment plan. Her sister also received a positive BRCA1 result as well, in 2019. Although her father was not tested, he could be a BRCA1 carrier.
In Rebecca’s Own Words:
“Given that I was 39 at the time of my diagnosis and that TNBC is often associated with a BRCA mutation, I was […] referred for genetic testing. After [an] excruciating eight week wait, I found out that I had tested positive for [the] BRCA1 mutation. I burst into tears yet again when I got that news. How could this be happening? Although my mom had been diagnosed with breast cancer two years before me, there was no other family history of the disease. My thoughts turned immediately to my four daughters. Now I was not only worried about myself but my innocent children who we now know have a 50% chance of also carrying the mutation.”
Where Is Rebecca Eligible to Access Hereditary Cancer Genetic Testing in Canada?
In this blog series, we see just how much access to healthcare in Canada can be determined simply because of where a person lives. Canada needs eligibility criteria that are the same across the country. Individuals concerned about hereditary cancer and people diagnosed with breast cancer cannot be at the mercy of their postal code determining their health and access to adequate healthcare.
Not only should access to genetic testing be the same across Canada, but it should also be updated to ensure it reflects our latest knowledge of hereditary breast cancer and gene mutations. Sources like the Canadian Recommendations for Germline Genetic Testing of Patients with Breast Cancer: A Call to Action should be consulted to develop standardized, inclusive, guidelines that don't let people fall through the cracks. Tied in with this is the importance of testing a large number of gene mutations that have been associated with breast cancer, not just the BRCA1 and BRCA2 gene mutations. Once developed, the eligibility to access genetic testing should be posted online and made publicly available by all provinces and territories.
Additionally, where the five women we spoke may or may not be able to actually access genetic testing is just for illustrative purposes. We only show where they meet the eligibility criteria that has been set and made publicly available by each PTs. It does not reflect their actual access to genetic testing for hereditary cancer as there may be further access criteria. For example, in some places a person can get genetic testing automatically if they meet the criteria, while in others, a referral from a doctor might be needed. This was shown in Mykah’s case where she does not meet the eligibility criteria in Alberta, where she lives, but was still able to get tested, although with a lot of bumps along the way.
Genetic testing is an important part of both prevention and treatment. It is important that access to genetic testing in Canada reflects this.
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