Monday, February 28, 2022
Meet Barry Stein, President and CEO of Colorectal Cancer Canada (CCC). For more than 23 years, Barry has been making a difference in the lives of people impacted by colorectal cancer in Canada and around the world.
To highlight Colorectal Awareness Month, Pfizer Canada started a conversation about the needs of people living with the disease and the important work patient advocacy groups like CCC do for patients and caregivers. Here, we continue the discussion with Barry about his journey in bringing support to those living with colorectal cancer.
How did you first get involved with patient advocacy?
In 1995, I was diagnosed with metastatic colon cancer that had spread to my liver and then to my lungs. I was completely at a loss as to what to do or who to speak to – support groups and advocacy in healthcare were not prevalent at the time.
I had never intended to be a cancer patient advocate but as circumstances would have it, I didn’t have a choice -- Following my first of four liver surgeries in New York, when I was in extreme pain, dehydrated and truly believed that I was not going to make it, I pledged that if I did make it through, I would give back and help other patients and their families so that they would not have to experience the same challenge I faced.
Circumstances had now thrown me into the middle of the healthcare system discussion at the time, and I recognized that destiny had brought me to the doorstep of advocacy causing me to advocate on behalf of others as much as myself.
What are some ways CCC advocates for patients and caregivers?
We work to advocate for patients and their families, from the grassroots level to the ministerial levels across the country.
Issues are constantly arising that require that the patient voice be heard. Our dedicated team at CCC advocates for the health policy changes on behalf of the public at large, people living with cancer collectively, as well as individually for people living with colorectal cancer and their caregivers.
We have advocated successfully for population-based screening across Canada, access to new diagnostics, new surgical techniques, chemotherapies, targeted therapies, and immunotherapies as just a few examples. Most recently, we have been at the forefront of advocacy for timely access to molecular testing so that patients can have access to the appropriate treatments based on their own tumour profile.
We regularly provide input both at the regulatory level as well as to health technology assessment bodies (CADTH and INESSS) providing insight on patient preferences and values, so that patients can have access to the right treatment for them, at the right time.
We have been working tirelessly to ensure patients know about and have access to clinical trials from the time they are diagnosed. We work with our researchers across Canada to advance research in colorectal cancer that includes the patient input from ideation of a trial and throughout the clinical trial continuum. In addition, our international partnerships help ensure that we have early knowledge of treatment options for colorectal cancer patients worldwide so we can advocate for them in Canada.
We also know how important psychosocial support is to patients and their families and our support services are an essential component of our work being central to everything we do. Consequently, we advocate for access to these services and provide as much personal support as possible ourselves to ensure that people living with colorectal cancer are not left alone.
Early age onset of colorectal cancer is another area we have been working on. For an unexplained reason, younger people are being diagnosed with advanced colorectal cancer more than ever before[i]. We are advocating on their behalf, supporting young adults, and providing resources, while at the same time working with researchers to discover new opportunities to prevent and treat the disease.
What brings hope for people living with mCRC (metastatic colorectal cancer)?
For those with advanced disease, it is a bit different. There is much more focus needed so that patients can request profiling of their tumours, understand treatment options, and ask the right questions that may not at first be so obvious to them.
There are so many different treatment options available and more than ever, it is important to be aware of the different options to best identify the appropriate treatment for an individual based on their own personalized genomic profile – and with that, patients need specific information and advice.
Knowledge is power and for most patients it enables them to become a self-advocate or at least for a family member or caregiver to advocate on their behalf and we are here to support them.
After more than 23 years of patient advocacy work, what keeps you going?
Knowing that at any given time I could be right back in the same place I began, facing the same challenges as every other cancer patient, no matter who they are, where they are from, what colour their skin is, what language they speak or what religion they believe in.
For colorectal cancer resources and support, visit www.colorectalcancercanada.com. And learn more about biomarker testing here.
[i] Cancer Care Ontario. Colorectal Cancer Increasing in Younger Adults. Available at: https://www.cancercareontario.ca/en/cancer-facts/colorectal-cancer-incre...