As the year slowly winds down, we look back on some of the many activities and projects that CBCN has participated in, developed, or updated. These efforts reflect our ongoing commitment to that ensure that the voice and perspectives of breast cancer patients are reflected in the work that we do.
We updated our digital drug navigation tool, MedSearch, to also include treatments for early stage breast cancer, along with the metastatic breast cancer drugs already listed. This digital database continues to be updated with all drugs that are Health Canada approved for the treatment of breast cancer, and helps patients and caregivers learn which drugs are publicly funded and how to access those that are not.
CBCN participated in the Quality End of Life Care Coalition of Canada, working with other member organizations and stakeholders to ensure that Canadians have access to quality end-of-life care. The annual meeting, held in January, allowed members to understand the progress made on the Blueprint for Action and provided the opportunity to discuss how end-of-life care can continue to be prioritized across Canada, including continuing to promote the Advanced Care Planning initiative.
CBCN provided critical input from the patient perspective to the CanReValue Collaboration’s public consultation to develop a framework for incorporating real-world evidence into drug funding decisions. We highlighted the need for CanReValue to collaborate with other industry and academic institutions that are also implementing real-world evidence initiatives, and for the framework to be used to shape conditional HTA recommendations for new drugs.
CBCN launched a newsletter, “COVID-19 & Breast Cancer” to ensure breast cancer patients and their families had critical information to help navigate the impact of the pandemic on treatments and follow-ups. The information from this newsletter was also published on our “COVID-19 and Breast Cancer: Updates and Resources” webpage to ensure that the information was easy-to-access. We also developed several blog posts in collaboration with patients and health care professionals to address questions and concerns about navigating the pandemic as a patient.
In order to provide breast cancer patients with a way to connect with each other and to inform CBCN of the needs of the breast cancer community, we created Canadian Breast Cancer Patient Network, a private Facebook patient group.
CBCN had the pleasure of attending the 2020 American Society of Clinical Oncology (ASCO) Virtual Conference. The virtual conference gave researchers in cancer care a chance to discuss and present many of the new and interesting research being done in the field of oncology. CBCN was able to share some of these highlights in our ASCO blog post.
Like so many in our network, CBCN closely followed the Black Lives Matter protests and the growing movement it inspired on the grounds and online, in Canada, and globally. In response to the Black Lives Matter movement, we released a statement on it, as well as our commitment to address the racial and ethnic disparities that exist in healthcare and breast cancer as best as we can.
CBCN had the chance to participate in the Teva Sponsored Symposium Panel "2020 Vision: Integration of Biosimilars in Provincial Programs" on June 14th where we shared the patient perspective on the use of biosimilars in oncology. For National Cancer Wellness Awareness Day, which was on June 26th, CBCN was featured in an article by NATIONAL. And on June 23rd and 29th, Innovative Medicines Canada (IMC) hosted two sessions on the industry perspective and response to the PMPRB (Patented Medicine Prices Review Board) reforms that CBCN participated in earlier in the month.
Regarding educational updates, information on Secretory Breast Carcinoma was added to our Types and Subtypes webpage. Secretory Breast Carcinoma is a cancer that occurs due to an over secretion of mucin in the tumor and is considered to be a subtype of invasive ductal carcinoma.
On July 6th, CBCN attended a research webinar hosted by PMPRB on drug pricing and its impact on research and development investments, clinical trials, and the availability of medicines in Canada. We also attended their webinar on draft guidelines for the public on July 8th. In addition to this, CBCN participated in the Canadian Agency for Drugs and Technologies in Health (CADTH) webinar on July 9th about making their Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), one process. CBCN submitted our input on the proposed alignment to CADTH, highlighting the need for more opportunities for patients and clinicians to be able to feed into the process.
At CBCN, we recognize the importance of providing patients with all options that are available to them. This is why we added a Living Flat section to our SurgeryGuide. Deciding whether or not to have reconstruction after breast surgery is a personal choice and it is important to know that choosing to live flat or asymmetrical is as valid an option, as choosing to have breast reconstruction.
On August 5th, CBCN, presented a webinar at the Canadian Centre for Applied Research in Cancer Control (ARCC) as part of their virtual conference. We shared how patient identified priorities can help inform knowledge translation tools and resources. We also highlighted our three digital patient navigation tools (SurgeryGuide, FinancialNavigator and MedSearch) at this session.
At CBCN, we strive to reflect the voice of all breast cancer patients and their caregivers through education, advocacy activities, and the promotion of information sharing. As part of this mission, we launched a survey and asked patients and caregivers to share their input based on their experience with breast cancer.
We also developed a fully updated and rewritten English version of our handbook for metastatic breast cancer patients. The updated handbook, Metastatic Breast Cancer Handbook: A Guide for Individuals Living with Stage IV Breast Cancer, offers a deeper look at how metastatic breast cancer affects your daily life and ways to help manage the changes that it brings.
In addition to updating an existing resource, we also published a new resource, Complementary Therapies Magazine. In this latest digital magazine, we explored mind-body practices, guided meditation, physical therapy, occupational therapy, Tai Chi, Qigong, art and music therapy and many more practices that support the overall health and well-being of breast cancer patients.
CBCN helped launch the BEAT-Cancer Coalition (Bringing Equitable Access to advanced molecular Testing for Canadians with Cancer) as a founding and steering committee member.
The Coalition aims to educate, shape policy, and improve public access to molecular diagnostic testing for all oncology patients. The BEAT-Cancer Coalition is a multi-stakeholder initiative that brings together patient advocacy organizations, academic institutions and organizations, testing technology companies, and innovative pharmaceutical companies to address critical issues affecting access to molecular diagnostics today.
Another new resource that we developed was CBCN Advocacy Guides, which are short booklets that take a deep dive into a specific topic to provide breast cancer patients with the knowledge and tools to become a part of their breast cancer care team. In our first guide, "Deciding Which Breast Cancer Surgery is Right for You?", we examined the options and standards of care for breast cancer surgery and shared steps patients can take to self-advocate for the option that’s best for them.
In preparation of Breast Cancer Awareness Month, we updated both our breast cancer and metastatic breast cancer infographics to reflect the most up-to-date information and research on breast cancer in Canada. And for their Health Insight Campaign, MediaPlanet highlighted the work that CBCN does.
Early in October, CBCN held its first virtual lobby day with Members of Parliament to discuss drug access challenges and opportunities in Canada. CBCN met with members of the Standing committees on Health, Status of Women and Industry, Science and Technology from each political party. In our meetings, CBCN followed up on key outcomes from our metastatic drug access campaign in 2019, and highlighted the need for PMPRB and CADTH drug reforms and Pharmacare plans to address existing gaps in treatment for patients as well as emerging challenges with precision oncology. We continue to engage Members of Parliament and other decision-makers to promote a patient-centric approach to drug approval and access in Canada.
Our second and third editions of ‘CBCN Advocacy Guides’ were launched. In these, we provided information regarding proposed changes to CADTH's drug reimbursement review processes as well as proposed changes to PMPRB's regulations. These proposed changes raised concerns within the patient community as they can negatively impact breast cancer patients' access to drugs in Canada, therefore, our goal with these two guides was to provide patients information on what these changes are, how such changes can impact them and ways to advocate for themselves.
On October 29th, CBCN hosted "Virtual Patient Education Session for People Living With Metastatic Breast Cancer". In this session, we discussed the next options for metastatic breast cancer patients when their treatment stops working with Dr. Karen Gelmon, pain management in relation to palliative care with Dr. James Downar, and digital resources to support decision making and advocacy with CBCN’s Director of Operations, Jenn Gordon.
On November 18th, CBCN hosted "Virtual Patient Education Session for People Diagnosed With Early Stage Breast Cancer". We discussed steps that patients can take to reduce their risk of recurrence with Dr. Roochi Arora, integrative medicine with Dr. Dugald Seely and transforming emotional energy into happiness and health with Dr. Rob Rutledge.
Canada’s drug approval processes involve three main elements - regulatory review, health technology assessment and price negotiation. We created a Drug Approvals infographic to make the complex terms involved in the drug approval process in Canada more accessible to patients.
CBCN participated in the Virtual San Antonio Breast Cancer Symposium to connect with researchers, physicians and advocates from around the world to learn about the latest advancements in the treatment of breast cancer.
It is humbling to look back on all the work that we achieved in the year and we look forward to what 2021 has in store for us, with the expectation that regardless of what it is, Canadian Breast Cancer Network will remain committed to being the voice of Canadians with breast cancer.