Standing up and advocating for cancer patients, caregivers, and survivors

The Canadian Cancer Survivor Network (CCSN) was created by a group of Canadians concerned about cancer. When cancer is the leading cause of death in Canada and is responsible for 30% of all deaths, there is cause for concern.

According to the Canadian Cancer Society’s latest report, it is estimated that[i]:

• 220,400 new cancer diagnoses and 82,100 deaths will occur in Canada in 2019.
• Lung, colorectal, breast, and prostate cancer will account for about half of all cancer diagnoses and deaths in 2019.
• About 1 in 2 Canadians will develop cancer in their lifetimes and 1 in 4 will die of the disease.
• 63% of Canadians diagnosed with cancer will survive at least 5 years after their diagnosis.
  
  

“One of CCSN’s priorities is to inform, train and involve patients, caregivers and survivors to work with us to promote improvements and change in all aspects of cancer care—including access to treatment and drugs,” explains Jackie Manthorne, President and CEO, CCSN. “We believe that the truly successful advocacy campaign must involve patients, caregivers and survivors who share their lived experience. What happened to them during their cancer journey must inform healthcare and cancer care professionals, politicians and other decision makers; from diagnosis to treatment to palliation.”

CCSN works to ensure that:

• Patients and survivors will easily access tools to understand decision making processes for positive change on issues critical to optimal patient care.
• Patients and survivors will be supported to make a difference through working with others to take action on those issues.
• Patients and survivors will obtain current knowledge about cancer treatment, options, and outcomes and be able to work together to end disparities in patient care and treatment.
• A network of patients, survivors, friends, families, community partners and sponsors will work together taking action to promote the very best standard of care, support, follow up and quality of life for patients and survivors.

“CCSN believes in the critical importance of raising key issues related to the mission of creating and maintaining the best standard of care for cancer patients in Canada, regardless where they live,” states Jackie Manthorne. “This is why we challenge all levels of governments, participates in various meetings and summits, and concert with other patient associations to make sure key issues such as Employment Insurance Sickness Benefits and National Pharmacare Program are always top of mind.”

Among all the great initiatives created by the organization, CCSN holds webinars, with three main streams:

1. Information about new treatments or presentations about specific cancers by patients or survivors;
2. Advocacy 101 sessions, such as how to have a successful meeting with your political representative or how to use social media/the media to get your point of view across;
3. Canada’s drug approval processes.

Lastly, a program called The Seat at the Table was developed by CCSN to increase the number of informed cancer patients, survivors and caregivers sitting on cancer and other healthcare Boards, where decisions are being made about cancer diagnosis, treatment, post-treatment care and research funding.  CCSN’s Curriculum Committee has developed a 10-module Science of Cancer E-education course.  The 10 modules will go into pilot testing by patients, caregivers and survivors in December, and will launch in January 2020.

CCSN’s social media includes:

• A robust, bilingual website, which includes a blog;
• Over 10,000 subscribers to their monthly E-letter;
• 8,500 likes on their Facebook page;
• Over 6,000 followers on their main Twitter feed (@survivornetca);
  
  

To learn more, please go to www.survivornet.ca, where you can sign up for CCSN’s free monthly newsletter, which contains information about CCSN’s activities and its upcoming webinars.

[i] Canadian Cancer Society. Canadian Cancer Statistics 2019. http://www.cancer.ca/en/cancer-information/cancer-101/canadian-cancer-statistics-publication/?region=on