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 and Rebecca Dahle. Today, let’s meet Khalilah Elliott and explore where she may or may not be eligible to access genetic testing for hereditary cancer in Canada.
About Khalilah Elliott
Khalilah currently resides in West Kelowna, BC. At the time of her diagnosis, she lived in Binbrook, ON. S was diagnosed with Stage III Ductal Carcinoma in 2016, a month after her 39th birthday. At the time, her daughter was 11 and her son was 5. Khalilah knew that two of her great aunts had had breast cancer; the younger had passed away in her late thirties and her sister had had a mastectomy. About a year after Khalilah’s diagnosis, her aunt on her mother’s side underwent genetic testing and discovered had the BRACA 1 gene. She opted to go the preventative route and had both breasts removed (a prophylactic mastectomy) to reduce the chance of a breast cancer diagnosis later in life.
Khalilah’s treatment consisted of 8 rounds of high-dosage chemo, a double mastectomy, 21 rounds of radiation, 18 dosages of Herceptin, and continual Tamoxifen medication for 10 years. Currently, she is in her 8th year of remission. During treatment, she had genetic testing done for 21 different breast cancer markers as part of a study she had signed up to participate in. She was tested for 21 different biomarkers, and none showed a predisposition to cancer. It was explained to her that different genes are being discovered all the time, but at that moment, they didn't know why she had developed breast cancer, although she had a family history. Khalilah is willing to be tested again in the future, as new genes are uncovered.
Where Is Khalilah Eligible to Access Hereditary Cancer Genetic Testing in Canada?
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AB |
Personal history criterion she meets that makes her eligible
Family history criteria she meets that make her eligible
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BC and Yukon |
Personal history criterion she meets that makes her eligible
Family history criteria she meets that make her eligible (for BC and YK, at least two of the family history criteria need to be met)
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NB, NS, and PEI |
Personal history criteria she meets that make her eligible
Family history criterion she meets that makes her eligible
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ON |
Personal history criteria she meets that make her eligible
Family history criteria she meets that makes her eligible
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QC |
Family history criterion she meets that makes her eligible
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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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