by Dr. Robin McGee, CKN Patient Advocacy Editor
One of the best ways to promote patient advocacy is to profile those who are in the trenches. To this end, I will be writing a series of interviews with champions and exemplars of patient engagement. What a privilege and a pleasure to share these stories! Many have shone their light before us, to light our path forward.
Like many of us, her advocacy story began with her own personal health crisis. She was an active wife, mother, and businesswoman when she was diagnosed at 36 with a rare stage IV renal cell carcinoma. After many massive and complex surgeries failed to prevent recurrences, her surgeon told her that she was out of options. “No surgeon will touch you again,” he said, “so go home and enjoy your family.”
For Deb, that death sentence was a call to arms. In 1996, there was no internet. Equipped only with determination and a fax machine, she sent out appeals to every doctor she knew for help. Eventually, one redirected her to a specialist surgical team at the renowned Princess Margaret Cancer Centre. When they told her they would indeed operate, she realized that her personal advocacy had paid off. “My world went from dark to light,” she recalls. “Only I knew – it should not have to be that hard to find the right care.”
Eventually, her treatments came to include several newly developed oral chemotherapy agents. These were both brutal and costly. At $6,000 per month, only her private insurance saved her from bankruptcy. In the waiting room, she sat next to others who did not have such resources – and would only be offered “best supportive care” (palliation).
The injustice of it was troubling to her, and to her fellow patient Tony Clark. One of the foundational values underlying Canadian healthcare is that it should be universal and equitable: all Canadians deserve access to life-saving medications. So together, they founded Kidney Cancer Canada – a patient-led organization devoted to promotion of equitable best practice care.
With a laughable budget of two grants of $2,500 from Big Pharma, the two of them volunteered their time and energy, embarking on a cross-Canada journey to each province, to promote adoption of the optimal kidney cancer drugs in each provincial formulary. They inspired local patients, politicians, and oncologists. Respectfully engaging with stakeholders and the media, they persuaded via “evidence-based advocacy.” They spoke truth to power. With facts. Eventually, they triumphed, and all Canadians had access to their best chance at extended survival in the event of kidney cancer. But it was too late for Tony. He passed away in April 2010, leaving behind a legacy of salvation for thousands.
Despite the agony of repeated recurrences of her own disease, Deb fought on. With Robert (Bob) Bick, she founded the campaign CanCertainty. The mission? To ensure that all Canadians can access oral chemotherapies for all types of cancer. In several provinces, infusional chemotherapies are publically funded, whereas oral ones are not. Determined to see this change, they launched a social media campaign with a compelling video. She and Bob continue to travel the nation, promoting dialogue between stakeholders, government, media, insurance companies, pharmaceutical companies, and cancer patients.
What keeps her going? How does she find the energy for advocacy, given her condition? “Listening to patients,” she says, “keeps me grounded. I am a peer mentor for others, and hearing their stories renews my strength to keep going, to keep seeking justice.” She and I agreed – promoting a citizen’s chance to stay alive is the ultimate civil rights movement.
What is Deb’s advice for those who are wanting to take that first step in advocacy? “Tell your story. On our website CanCertainty.ca, there is an option to share your story with us privately. If you want to do more, we can advise you where to start. We are always eager to talk to and support those who want to advance equity in oncology care.”
In September 2015, Deb was decorated by the Governor-General of Canada, awarded the highly prestigious Meritorious Service Medal. Part of the Canadian Honours System, this award recognizes individuals who have performed “an exceptional deed or activity over a limited period of time, which brought honour to their community or to Canada.” Hence, Deb can deservedly use the honourific MSM after her name. Touchingly, Tony received his medal posthumously.
Deborah Maskens teaches us that even those in active treatment can still approach cancer advocacy with vision, with verve, and with dignity.
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her colorectal cancer.