The Development and Impact of AYA Can - Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada

Sep 21, 2026

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Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can advance outcomes for underserved health conditions, including AYA cancer. In 2018, AYA patient advocates founded AYA Canada, later renamed “AYA Can—Canadian Cancer Advocacy,” a peer-led national organization. The article describes its development and impact, including incorporation as a not-for-profit in 2021 and registered charity status in 2023, plus community building, advocacy, research collaboration, training, and a national resource hub.

LanguageEnglish

CategoryHealthcare

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1. Introduction

Commentary The Development and Impact of AYA Can—Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada Chantale Thurston 1,*, Julie M. Deleemans 1,2, Jason Gisser 1, Emily Piercell 1, Vinesha Ramasamy 1 and Perri R. Tutelman 2, * 1 AYA Can—Canadian Cancer Advocacy, Winnipeg, MB, Canada; julie.deleemans@ucalgary.ca (J.M.D.) 2 Department of Oncology, University of Calgary, Calgary, AB T2S 3C3, Canada * Correspondence: [ayacanada.info@gmail.com](ayacanada.info@gmail.com) (C.T.); perri.tutelman@ucalgary.ca (P.R.T.) Citation: Thurston, C.; Deleemans, J.M.; Gisser, J.; Piercell, E.; Ramasamy, V.; Tutelman, P.R. The Development and Impact of AYA Can—Canadian Cancer Advocacy: A Peer-Led Advocacy Organization for Adolescent and Young Adult Cancer in Canada. Curr. Oncol. 2024, 31, 2582–2588. [https://doi.org/10.3390/](https://doi.org/10.3390/)[ ](https://doi.org/10.3390/)curroncol31050193 Received: 5 April 2024 Revised: 24 April 2024 Accepted: 29 April 2024 Published: 2 May 2024 Copyright: © 2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ([https://](https://)[ ](https://)[creativecommons.org/licenses/by/](creativecommons.org/licenses/by/)[ ](creativecommons.org/licenses/by/)[4.0/](4.0/)) . Abstract: Adolescents and young adults (AYAs; 15–39 years) diagnosed with cancer face disparities in outcomes and survival. Patient advocacy organizations can play a pivotal role in advancing outcomes for underserved health conditions, such as AYA cancer. In 2018 a group of AYA patient advocates founded AYA Canada (later renamed to “AYA Can—Canadian Cancer Advocacy”), a peer-led national organization aimed at improving the experiences and outcomes of Canadian AYAs affected by cancer. The aim of this article is to describe the development and impact of AYA Can. AYA Can was incorporated as a not-for-profit organization in 2021 and became a registered charity in 2023 . Since 2018, AYA Can has established a thriving community of practice comprising nearly 300 patients, healthcare providers, researchers, and charitable organizations with an interest in advocacy for AYA cancer. Other activities have included advocacy at academic conferences and on scientific committees, collaboration with scientists to advance AYA cancer research, training the next generation of AYA patient advocates through a “patient ambassador program,” and developing a national resource hub to centralize knowledge and information on AYA cancer. Through its work to foster collaboration and amplify patient priorities on a national scale, AYA Can has become a leading voice for AYA cancer advocacy in Canada. Keywords: adolescent and young adult cancer; AYA; patient advocacy; patient and public involvement; empowerment 1. Introduction The incidence of cancer in adolescents and young adults (AYAs; 15–39 years) is on the rise, with an estimated 9000 AYAs diagnosed with cancer in Canada in 2023 [1] . AYAs area distinct oncology population and face unique challenges within the cancer care system. While receiving a cancer diagnosis is an inherently difficult experience for patients of any age, AYAs must navigate the physical impact of cancer during a pivotal stage of life that is characterized by a focus on education and employment goals, romantic, social, and family relationships, fertility and family planning, and identity exploration [2,3] . AYAs exist atthe margins of pediatric and adult cancer care, and neither system is adequately equipped to address the needs of this population [4] . As a result, AYAs experience significant unmet needs [5,6] and poorer psychosocial and medical outcomes compared to other age groups [7,8] . Often referred to as cancer’s “forgotten generation” [9], AYAs experience health disparities across the cancer continuum. Survival rates for AYAs

FAQs

What challenges do adolescents and young adults (AYAs) face after a cancer diagnosis?

AYAs must navigate physical impacts during a critical life stage involving education, employment, relationships, fertility decisions, and identity exploration. They also face unmet needs and poorer psychosocial and medical outcomes compared with other age groups.

How did AYA Can come to be established and renamed?

In 2018, AYA patient advocates founded AYA Canada, which was later renamed to “AYA Can—Canadian Cancer Advocacy.” The article explains its subsequent organizational milestones and growth.

What activities does AYA Can undertake to improve AYA cancer outcomes in Canada?

AYA Can builds a community of patients, providers, and researchers; supports advocacy at conferences and committees; collaborates to advance AYA cancer research; trains future patient advocates via a patient ambassador program; and develops a national resource hub to centralize knowledge.

Sep 21, 2026

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