How did you get involved with the Canadian Breast Cancer Network? What attracted you to the organization?
Niya Chari of the Canadian Breast Cancer Network and member of the BioCanRx – Cancer Stakeholder Alliance Working Group
Like many Canadians, I have had loved ones go through a cancer diagnosis. I have seen first-hand how challenging and devastating this disease can be. But I have also seen how pivotal access to early detection and treatment can be for a patient’s prognosis. I think that’s why the Canadian Breast Cancer Network’s mission to ensure the best quality of care for all Canadians affected by breast cancer, really spoke to me on a personal level. It was an opportunity to support a mandate that centers patients and their needs in cancer care.
Tell us about your role in the organization? (How did your background and experience prepare you for the work you’re doing?)
I have been the Director of Health Policy and Public Affairs at CBCN for 8 years. While I wear many hats within the organization, my primary responsibility is to lead the organization’s advocacy and public engagement platforms. In a sense, my role is really to champion the patient voice and ensure that their perspectives are shaping health-care decision-making across Canada.
I’ve been well-trained for this position through my history in advocacy over the last 15 years. I first started out as a youth advocate promoting the civic engagement of young people in Toronto. After I finished my Master of International Public Health degree, I knew that I wanted to focus on addressing the inequities in health care that exist both in Canada and globally. Before landing at CBCN, I moved to Ottawa to work in global health advocacy co-ordinating parliamentary delegations for Canadian MPs to see how our foreign aid investments are being used to support health efforts in other countries.
Working with policy-makers at various municipal, provincial, federal and even global levels, has taught me the importance of community mobilization and the power of asking for what you want. Too often we assume that things cannot be changed, but I’ve been able to witness how simply speaking up and working collaboratively can effect powerful changes.
What inspires you most about working for the Canadian Breast Cancer Network? (What are you most proud of?)
CBCN is an organization that is extremely committed to ensuring that the needs of cancer patients are being addressed. Everything in the organization is reflective of this patient-centered approach, including our governance structure. CBCN’s board of directors is entirely comprised of individuals who have undergone a breast cancer diagnosis themselves. This unique model drives our commitment towards focusing on the needs of patients and using that to improve the health care system. Over the years, we have been able to build navigational resources for patients, change health care policies to be more inclusive, to get breast cancer patients better access to treatments and to prepare our health care systems to address emerging gaps in patient care. I’m grateful for the continued opportunity to be able to shape the system so that it ultimately works better for patients and their families.
COVID-19 has brought many challenges to cancer patients and to the not-for-profit organizations supporting them. How has the pandemic affected the CBCN and your stakeholders? How have you had to adapt?
This global pandemic has impacted everyone-including many health charities. It has required greater flexibility and adaptiveness to be able to fully respond to the concerns of patients during this challenging time.
CBCN has had to pivot many of our planned in-person educational and advocacy programming to a virtual format. As the information about cancer and COVID-19 has changed so rapidly, our organization has made it a priority to share credible, relevant information for patients. We have developed an ongoing COVID-19 electronic newsletter to keep patients informed, and we regularly update the information on our website to reflect the latest updates in cancer care. Working closely with our medical advisory board we have also developed resources and information for patients to guide their cancer care. We are also continuing to work in collaboration with the wider patient community to advocate for increased government support for patients, and the non-profit sector.
Looking forward, what are you hopeful about for cancer organizations such as the CBCN?
There is still so much to be done to address the concerns of breast cancer patients and their families in Canada. I’m hopeful that CBCN will be able to continue to grow to meet the needs of patients and to champion their voice and lived experiences to decision-makers. Patient groups like CBCN play a vital role in driving our health care system to be more responsive to the actual needs of patients. I hope we can continue to fulfill our vision for Canadian breast cancer patients to receive the best quality of care possible.
What else would you like to share about the CBCN?
CBCN offers patients and their families a number of valuable resources, and educational and advocacy tools, which are all found on our website http://www.cbcn.ca/. We have also launched a new online patient network to help reduce the isolation that so many patients report feeling.
The Canadian Breast Cancer Patient Network offers a safe discussion space for breast cancer patients, both past and present. This new private Facebook group connects patients to information, support and resources and allows patients to discuss issues of concern to them and receive helpful information and tips directly from other patients who have been there or who are currently going through the same thing.
What do you like to do when you’re not working?
I love to spend time with my family in Ottawa, especially my two-year-old daughter. In non-COVID times, I love to travel. Currently, I’m using my time at home to indulge my podcast and Netflix obsession and discover new things to cook.
