Deb Maskens

Deb & Tony in waiting room where they metWorking in and around the health care community, it’s not unusual to hear good stories about people who receive help and support for their illness and then want to ‘pay it forward’. These stories are always inspiring, and this one about four kidney cancer survivors and how they are helping others like themselves is no exception.

“When you are lucky enough to receive the best treatment available from caring physicians and health care staff, you feel empowered to support others and help them with all the questions and anxiety that you once felt about your disease,” explains Deb Maskens, the Vice Chair of Kidney Cancer Canada, an organization founded by four patients who all had kidney cancer, and all received treatment from Drs. Jewett and Knox at Princess Margaret Cancer Centre.

The Princess Margaret conducts numerous clinical trials of promising new drugs and treatments for various forms of cancer. Back in 2006, Deb was a part of one of these trials for a drug called Nexavar, and she spent her share of time in waiting areas of the hospital. One day she noticed that Tony Clark had a similar bottle of pills to hers and struck up a conversation. Two others, Don Kurylo and Paul Beregi, soon joined in. These four exchanged email addresses and arranged their hospital appointments on the same days so they could continue to talk and support one another. Their doctors soon saw the positive impact that they were having on one another, and asked if they would be interested in widening the scope of their support to include others. So the peer support group Kidney Cancer Canada (KCC) came to be born.

The Princess Margaret also has psychosocial specialists who assist with the emotional impacts of cancer. Maja Regehr of the Healing Beyond the Body Program is one such specialist, and she and Joan Basiuk, a clinical research nurse, both worked with the group training them to provide peer support.

In the past year, the group has been busy establishing an online base at www.kidneycancercanada.ca, where they:

  • share news about kidney cancer and the treatment available
  • lobby for financial support for new drugs
  • manage an online forum where patients and caregivers are welcome to ask questions and share their story, and
  • help bring together the experts on kidney cancer so information exchange is facilitated

Wally Vogel, also a patient of Dr. Knox, had experience with Web site design and he launched the first version of the site in 24 hours! Three pharmaceutical companies, Bayer, Wyeth, and Pfizer, provide the funding needed to maintain the Web site and print and distribute brochures.

The group continues to build on their strong relationship with the doctors at The Princess Margaret, and together they are all focused on building a national support network that connects patients, caregivers and health care experts from coast to coast.

“The beauty of the Web is that we can easily share the valuable information we receive and compile with anyone who can benefit from it. We try to webcast and/or record all of our meetings so the information benefits patients from BC to Newfoundland,” explains Tony Clark, Chair of KCC.

KCC is now playing a vital role in patient advocacy. Together with Drs. Knox and Jewett, they hosted a press conference at Queen’s Park in Toronto to highlight the need for the Ontario government to fund new treatments for kidney cancer—and they were successful. They have gone on to connect with patients in other provinces to help ensure patients have a strong voice in the drug review process for kidney cancer.

“What this survivor movement has achieved so far and in remarkably short time has already had a positive impact on kidney cancer patients across Canada. Watching this group come together has been one of the most gratifying parts of my work in oncology to date,” says Dr. Jennifer Knox, a medical oncologist at The Princess Margaret. “While the last couple years has seen real breakthroughs in drug treatments for advanced kidney cancer, I have no doubt that it will be KCC that helps ensure the best of this new era reaches Canadian patients with kidney cancer.”

“This is an example of community building and community support at its finest,” says Dr. Michael Jewett, a surgical oncologist at Princess Margaret Cancer Centre who holds the Farquharson Chair in Kidney Cancer Research. He feels great pride at seeing this support group for kidney cancer grow and flourish. “From a tiny seed, this community has blossomed, and it is a wonderful model for other patient support groups to follow.”

Revised: October 2013