Barry Stein, B.Com., B.C.L., LL.B.
Department:Barry Stein,Patient Advocate,WP6
Barry sits on the Board of Directors of several corporations, not-for-profit organizations and foundations including Colorectal Cancer Canada, Donald Berman Foundation, Exactis Innovation, Tikva Children’s Foundation and Anzie Accessories & Design Inc.
He is a member the Board of Directors (Observer) of Quebec Clinical Research in Oncology (Q-CROC) and a member of the Board of Directors of the Canadian Personalized Healthcare Innovation Network (CPHIN). He is also a patient advisor to Alberta’s O2 Oncology Outcomes Real World Evidence Project.
Barry is the president and a Director of the Coalition Priorité Cancer au Québec. He is a founding member of the Canadian Partnership Against Cancer’s National Colorectal Cancer Screening Network (NCCSN). He also currently chairs the IQVIA Advisory Council for the Advancement of Health in Quebec.
As the president and CEO of the Colorectal Cancer Canada (CCC) he actively represents the interests of cancer patients and speaks regularly to medical professionals, industry, government, and patient groups across Canada and Internationally about colorectal cancer, Patient Values and Preferences in Health Technology Assessment, Clinical Trials and Real World Evidence, Young Adults with Cancer, Personalized Medicine and Companion Diagnostics, Biosimilars, Colorectal Cancer Screening, Foods that Fight Cancer and other CCC programs and research projects.
What seemed to be impossible at the age of 40 became a reality in October of 1995. Married with three young children 7, 9 and 13 years old, and practicing law in Montreal, I thought I had it all. I was sure the constant migraines were the caused by the bright lights of the courtroom and that the stress of the practice led to the symptomatic blood in my stool, and were all to be ignored.
A CT scan further confirmed that it had metastasised to my liver. A short meeting with head of oncology at my local hospital literally left me flat on my back after fainting when learning that I only had a 30 % chance of surviving five years if they could remove it from my liver. While that was one of the weakest moments of my life, when I got up, it became one of the empowering moments in my life.
I searched worldwide to seek what new options might be available and stumbled on what was then a novel therapy, Hepatic Arterial Infusion (HAI) being done in New York. The cost of leaving Quebec’s public healthcare system and accessing health care for this in the U.S. was enormous and if it failed, I would put my family in financial jeopardy. I therefore elected to go for a hepatic resection in Montreal. As fate would have it, there was a huge backlog in cancer surgeries in Montreal and after three postponements including one after having checked into the hospital, I was sent home to wait once again.
Through a series of coincidences and good luck after having done my research in New York City, friends arranged that I immediately be scheduled for surgery in New York only a few days following the third cancellation of my surgery in Montreal. I borrowed the funds necessary for the surgery and within days had a liver resection and a HAI pump installed.
Because healthcare is normally covered by the public health insurance agency in Quebec (“RAMQ”) and because the required services were not available in a timely manner in Quebec, I took legal action against RAMQ to cover the out of country medical costs which at that point were mounting and were over a quarter of a million dollars. This was a long and tiresome physical, psychological, and legal battle that on the one hand I found totally draining, but on the other hand it gave me the sense that I could also do something to help other cancer patients.
My amazing surgeon in New York told me about a clinical trial in Santa Monica utilizing a vaccine to prevent a recurrence. Off we went to LA every two weeks for the better part of a year to try and stop a recurrence. All went well with the vaccine trial and we began to think that cancer would be in the rear-view mirror, but then the crushing news. There were now metastases on my lungs. Back to square one.
The first lung surgery went well, but then again, we found more lesions on both lungs. A couple of months passed, and I decided to go for it all once again. The pain from doing both lungs at the same time was intense, but amazingly, news of winning the Superior Court judgment against RAMQ broke while I was in the recovery room. The adrenalin rush and joy of winning quickly took away the pain.
The decision became a leading precedent that led to other cancer patients including breast cancer patients being treated out of the country until the delays for treatment in Quebec and Canada could be reduced. That was it, I was officially a cancer advocate and on the record for it.
While I can go on about the great accomplishments of our team at Colorectal Cancer Canada, the truth is the most important part of the journey is that it is now 2021, we all survived, the kids are all grown up and married and we have 8 wonderful grandchildren both in Canada and the US. That is my greatest accomplishment and everything that this cancer advocate works for above all.