April 19, 2022
Read recommendations on how to improve access to fertility information, supports and services for adolescents and young people with cancer
Over 200,000 Canadians are diagnosed with cancer annually, 8,000 of whom are adolescents and young adults (AYAs) aged 15-39, with a 5-year survival of over 80%. To improve the care and support of children and AYAs with cancer, emphasis needs to be on survivorship success beyond treatment, including timely access to information on the potential impacts of treatment to fertility and the fertility preservation options available to them. The World Health Organization states that individuals and couples have the right to decide the number, timing and spacing of their children. One option in preventing infertility in cancer patients is through fertility preservation, which is an important part of realizing the right to have a family.
In 2019, the Canadian Partnership Against Cancer (the Partnership) working with the AYA National Network released the Canadian Framework for the Care and Support for Adolescents and Young Adults with Cancer. The vision of this national framework is that all AYAs with cancer in Canada receive optimal, developmentally appropriate care and comprehensive survivorship support that lead to improved outcomes and high quality of life. There is an opportunity to implement an accelerated action within the Canadian Framework focused on improving access to fertility information and affordable fertility preservation options by leveraging existing Partnership priority initiatives.
Recommendations to improve access to fertility information, supports and services
Improve coverage for oncofertility services for all people with cancer.
The costs of fertility preservation are often not covered by insurance. Some jurisdictions have comprehensive fertility coverage because of mandates on insurance, and some have recently begun mandating coverage of fertility preservation. Currently there is no standardized support through government and other programs for fertility services in Canada. In addition, there are significant differences in costs for male and female patients. Financial barriers such as the immediate costs, ongoing costs of storage of samples and cost for future treatment to complete fertility goals continue to greatly influence AYA decisions to undergo fertility reservation procedures. Alternative cost approaches include implementing a flexible deferred patient payment plan and providing some level of government subsidies for oncofertility services. The goal will be to improve coverage of provincial health plans to fund oncofertility treatments for equal access to all Canadians.
Embed an oncofertility screening prompt into patient reported outcome tools.
Identify cancer patients that would like to discuss potential fertility risks with their cancer clinician and make necessary referrals to appropriate fertility specialists as needed. To identify patients who might benefit from a fertility discussion, an oncofertility screening prompt can be used prior to initiation of treatment. It is recommended that this prompt be asked of all cancer patients during their reproductive years and throughout a patient’s in-cancer centre treatment journey.
Develop and implement a sustainable clinical referral pathway.
Implement a clear referral pathway to communicate effectively with fertility preservation services to ensure that a consultation and possible procedure(s) can be organized in a timely manner, if appropriate, before the start of cancer treatment. Pathways need to be culturally safe for First Nations, Inuit and Métis and an accessible pathway for all cancer patients (including equity deserving groups).
Develop, promote, and share oncofertility education resources.
Awareness and uptake of resources is needed for informed decision-making by patients. Cancer patients are often not informed about fertility risks and preservation options when treatment is being planned. Physicians’ expertise impacts a patient’s decision in fertility preservation. It is important for physicians and other healthcare providers to know the importance of patient awareness and fertility risks, and have knowledge about local fertility centres, provide referral, and to allow time for patients to access fertility preservation services. Education materials are developed with a focus on equity and are culturally appropriate, so they are accessible to all cancer patients (including First Nations, Inuit and Métis and equity deserving groups).