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The Voice of People With Breast Cancer


Our Voices Blog

CBCN-in-Action: 2021 in Review

The Canadian Breast Cancer Network exists to ensure the best quality of life for all Canadians diagnosed with breast cancer. We do this by voicing the views and concerns of breast cancer patients through education and advocacy activities. We also work to ensure that what we undertake is: patient-centered, credible and promotes equity.

Here are just some of the ways that we achieved this, and more, in 2021.

Addressing Financial Equity

We acknowledge that those affected by breast cancer come from diverse cultural, linguistic, social, economic, geographic, and family backgrounds. One of the ways that CBCN addresses the economic disparities across Canada and the financial burden that comes with a breast cancer diagnosis is through FinancialNavigator. FinancialNavigator is our navigation tool that can help patients and their families find sources of financial assistance to offset the financial burden of a cancer diagnosis. This year, we updated FinancialNavigator with the following financial assistance programs:

Improving Drug Access for Breast Cancer Patients

CBCN is dedicated to ensuring that Canadians affected by breast cancer have fair and equitable access to essential treatments, focusing our advocacy efforts on access and coverage. MedSearch, our navigation tool that provides general information about the various treatments for breast cancer, was created so that patients can track breast cancer drugs available in Canada and funded in their province. MedSearch was updated with the following information this year:

  • Atezolizumab (Tecentriq), a targeted therapy for triple negative breast cancer, was added to MedSearch.
  • Larotrectinib (Vitrakvi) received a positive, final recommendation from CADTH.
  • Kanjinti, a biosimilar of Trastuzumab, was added to MedSearch.
  • Palbociclib (Ibrance) with fulvestrant, is now funded in British Columbia and Ontario.
  • PHESGO (Pertuzumab and Trastuzumab), a targeted therapy for HER2+ breast cancer, was added to MedSearch.
  • Pembrolizumab (Keytruda), an immunotherapy for metastatic triple negative breast cancer is Health Canada and was added to MedSearch.
  • Ribociclib (Kisqali) with an aromatase inhibitor, is now funded in Alberta, British Columbia, Manitoba, Newfoundland and Labrador, and Ontario.
  • Ribociclib (Kisqali) with fulvestrant, is now funded in Alberta, British Columbia, Manitoba, Newfoundland and Labrador, and Ontario.
  • Ribociclib (Kisqali) with letrozole, is now funded in Manitoba and Newfoundland and Labrador.
  • Trastuzumab deruxtecan (Enhertu) is now Health Canada approved.
  • Tucatinib (Tukysa) received a positive, final recommendation from CADTH.

We also added information about manufacturers' patient support programs (PSP) directly into MedSearch. The following treatments have PSPs:

In addition to the updates that we made to MedSearch, we were engaged in the following efforts related to breast cancer drug access for Canadians:

  • Connected 10 people living with HER2+ metastatic breast cancer with AstraZeneca to participate in a patient advisory board to help inform their launch of trastuzumab deruxtecan (Enhertu) in Canada
  • Connected with L'INESSS in Quebec about the restricted access to palbociclib (Ibrance) for pre-menopausal women with HR+ metastatic breast cancer
  • Wrote letters to the Ministry of Health in Quebec, advocating for access to a new mBC therapy that is currently not listed on the provincial formulary
  • Provided patient submissions to Canadian health technology assessment agencies, CADTH and INNESS, for
    • Pertuzumab in combination with trastuzumab (PHESGO) for the treatment of early stage HER2+ breast cancer
    • Alpelisib (Piqray) for the treatment of PIK3CA mutated HR+ metastatic breast cancer
    • Tucatinib (Tukysa) for the treatment of HER2+ metastatic breast cancer
    • pCODR submission for sacituzumab govitecan (Trodelvy) for the treatment of metastatic triple negative breast cancer

Engaging The Patient Voice

The voice and perspective of breast cancer patients is central to the work that CBCN does. We do this by empowering patients to find their voice and by creating resources that are informed by the patient voice.

Resources Informed by the Patient Voice
CBCN began putting together PatientPath, our newest navigation tool that will walk patients through what to expect and the standard of care depending on where they are in their breast cancer diagnosis. Since the patient voice and perspective is important to include in the work that we do, we created a Patient Advisory Board to inform PatientPath. Doing so ensures that what we do reflects the lived experiences of breast cancer patients across Canada.

Resources that Empower Patients to Find their Voice
Our Digital Advocacy and Storytelling Toolkit was launched this year as a toolkit that provides patients and their families, as well as caregivers with the resources and guidance needed to advocate for causes that are important to them. This toolkit helps patients identify their issue, craft how to advocate for their issue via telling their story and helps them determine the appropriate avenue to tell their story and the actions to take as the next steps.

Our Voices is our online blog that provides patients with a platform to share their experiences in their own words and to inspire others who may be or may have gone through the same thing. This year, we published 23 stories from patients who shared various parts of their experience with being diagnosed with breast cancer, including:

We also published blogposts that teach patients about self-advocacy, finding their voice and becoming part of their healthcare team, including:

Educating and Providing Patients with Credible Information

CBCN provides current, credible, and accessible breast cancer resources that are delivered through digital platforms, navigation tools, print materials, and patient-centered events. Each year we publish and produce new resources or update older ones to ensure that the information is still up-to-date. Below are the new resources that we published and produced in 2021.

Q&E: Questions and Experts Virtual Series
A breast cancer diagnosis comes with so many questions and there never seems to be enough time at appointments to have some of these questions answered. To help address this, we developed a Q&E: Questions and Experts series which allows participants to ask any questions they have on the featured topic. We held a session on the following topics:

Patient Magazines
Our patient magazines are themed digital magazines that focus on topics of interest for breast cancer patients. This year, we published Talking Palliative Care which focuses on topics such as pain management, grief, hospice and palliative care consideration, and more. We also put together COVID-19 and Breast Cancer: Patient Voices, Expert Knowledge which highlighted patient experiences with navigating breast cancer during a worldwide pandemic along with information for cancer patients from healthcare professionals and experts.

Breast Cancer Connection Podcast
This year, we launched Breast Cancer Connection an informative, conversation-based podcast designed for patients and caregivers. Breast Cancer Connection breaks down complex terms and topics through meaningful discussion with expert voices. In our podcast, we discussed the following topics:

Our Voices Blog
CBCN also published various blogposts on Our Voices that provides information on many different topics such as:

Precision Oncology and Breast Cancer
To help understand the different perspectives and values on precision oncology in breast cancer and the role of testing and data, CBCN hosted two national virtual roundtables: one with breast cancer patients living with different types and stages of breast cancer and one with oncologists. Our newest health policy paper, Precision Oncology and Breast Cancer: Considering Canada's Approach in an Evolving Landscape shares observations, key takeaways and recommendations based on insights collected from these conversations.

Advocacy Guides
CBCN's Advocacy Guides are short booklets that take a deep dive into a specific topic as a means to provide you with the knowledge and tools to become part of your breast cancer care team. We published two new advocacy guides, Accessing Genetic Testing in Canada and Accessing Genomic Testing in Canada. These two guides help patients understand the differences between genetic testing and genomic testing, when this testing may be applicable and how to advocate to access these types of testing.

2021 Virtual Conferences
In order to educate breast cancer patients, it is important that we also educate ourselves and that we stay up-to-date on what is happening in oncology, health research, and more. This allows us to be aware of what healthcare professionals are up to and what is coming down the pipelines. This year, we attended and/or participated in the following virtual conferences:

  • 2021 CADTH Symposium
  • Advance Breast Cancer Conference (ABC6)
  • American Society Of Clinical Oncology Congress
  • BioCanRX Summit
  • Canadian Association of Nurses in Oncology
  • Canadian Cancer Research Conference
  • Cancer Clinical Trials Conference
  • European School of Medical Oncology Symposium
  • San Antonio Breast Cancer Symposium

An ongoing pandemic does not stop breast cancer patients facing a variety of factors such as needing access to treatments, advocacy, and credible information. That is why, this year, we continued and stayed committed to our mission of educating patients, advocating for patients, and providing patients with the right tools to be active members of their healthcare team.

Photo by Polina Kovaleva from Pexels

The views and experiences expressed through personal stories on Our Voices Blog are those of the authors and their lived experiences. They do not necessarily reflect the position of the Canadian Breast Cancer Network. The information provided has not been medically reviewed and is not intended to be a substitute for professional medical advice. Always seek the guidance of your healthcare team when considering your treatment plans and goals.