Kidney Cancer Canada eNews
Issue 9: 2015
What an exciting year for kidney cancer with the rapidly changing treatment landscape, giving new hope for the future!
On a more personal note for Kidney Cancer Canada, we end the year with news that we share with pride and honour. Kidney Cancer Canada founding members Deb Maskens and the late Tony Clark will be awarded the Governor General’s Meritorious Service Decoration (Civil Division) in 2016 for their role in founding our organization and their groundbreaking work advocating on behalf of kidney cancer patients across Canada.
HOW IT ALL STARTED
Deb and Tony met by accident one day in the waiting room of the Princess Margaret Cancer Centre. Before they met, neither had known another kidney cancer patient and with so little information available about kidney cancer at the time, their exchange was extremely rewarding. They made it a point to continue their talks by making their appointments at the same time and soon two other kidney cancer patients joined them, forming the Fab Four. Their physicians witnessing their conversations saw the tremendous value of peer-to-peer support and asked them if they would like to form a support meeting on a larger scale.
In 2006, following a small meeting of 10 to 12 patients and caregivers, a first website was put up overnight and the first patient education meeting was held, with 2 doctors presenting information to 45 patients and caregivers. Kidney Cancer Canada has now grown to a network of over 2,500 patients and caregivers nationwide with meetings across the country, online information and peer support programs.
2010 Kidney Cancer Canada board members
ADVOCATING COAST TO COAST
Deb and Tony changed the landscape of treatment for kidney cancer through relentlessly advocating to make treatments available. At the time, there were two new medications for kidney cancer patients, but they were only available if patients had private insurance or could pay themselves. Deb and Tony saw it fundamentally unjust that some would have access to treatment and others would not. They travelled from Bristish Columbia to Newfoundland meeting with decision makers in each province to make the case for kidney cancer patients, and getting these treatments publicly reimbursed. When the third drug came on the market, Deb and Tony packed their bags again. Today our work continues for each new treatment, bringing the patient voice forward in all decisions where patients’ lives are affected.
We remember Tony fondly for the hope and inspiration he brought to every patient he met, his positivity and never taking NO for an answer. Kidney Cancer Canada is privileged to carry on Tony’s legacy. Deb continues to relentlessly advocate for fair and equal access to treatment for all cancer patients in Canada leading the CanCertainty campaign, and is also leading the way internationally for patient groups as Vice-Chair of the International Kidney Cancer Coalition. We would not be where we are today as a kidney cancer community without the vision, dedication and tenacity of Tony and Deb.
From everyone at Kidney Cancer Canada we wish you Happy Holidays filled with the warmth of loved ones, laughter and good cheer!
Kidney Cancer Canada is a charitable patient-led support organization established to improve the quality of life for patients and their families living with kidney cancer. Kidney Cancer Canada advocates for access to new treatments, provides support and information to patients, funds much-needed research, and works to increase awareness of kidney cancer as a significant health issue. Our goal is to help patients navigate through information about their disease and ensure they have access to new treatment options available to them.