When I was diagnosed with breast cancer in my early 30s, I was mad as hell. I was too young and my children too vulnerable. Not long afterwards, my marriage ended and I became a frayed-at-the-edges single mom with bad hair who yelled too much and stapled Girl Guide badges on instead of sewing them.
I channelled my frustration into organizing advocacy efforts to lessen the risks of my kids getting cancer and making the experience of cancer better for patients who followed me. That was 30 years ago, the beginning of the cancer movement. By demanding a voice, better information and fewer obstacles to treatment, accountability for research funding, and investment in person-centered care and primary prevention, advocacy has changed the way we think about the role of the person with cancer in the medical process.
Just like parenting, advocacy efforts demanded urgency and perseverance and daring and a razor-sharp focus on solving problems and not letting the chaos win. I earned a reputation as a pain-in-the-butt advocate, with my daughters and in the cancer community.
Our movement’s crown jewel came in 2005. That year, the Campaign to Control Cancer—a coalition of 80 groups, all focused on cancer—organized meetings across the country between advocates and elected officials, calling for the federal government to fund the Canadian Strategy for Cancer Control, a national plan to reduce incidence and death. The groups served many different agendas and types of disease, but the hell of cancer is universal, and in that moment the community united for one bold move. And it worked.
The meetings, along with a series of full-page ads in the Globe and Mail, culminated in 2006, when Prime Minister Harper funded the Canadian Partnership Against Cancer, with $260M over five years for the agency to lead the national plan.
The goal of the cancer plan was to reduce the number of Canadians diagnosed with cancer, enhance the quality of life of those living with cancer, and lessen the likelihood of dying from cancer. Targeted actions outlined in the business plan for the Canadian Strategy for Cancer Control would prevent 1.2 million new cases and prevent over 400,000 deaths in the next 30 years.
That simple, clear message promised to further galvanize the cancer movement with urgency, perseverance, and daring.
In the decade after that victory, I grew comfortably apathetic. I survived far longer than expected and I achieved two goals: seeing my daughters become confident, compassionate, accomplished and thoughtful women and helping secure Canada’s cancer plan.
Late last year, my survivor luck ran out. A new diagnosis of ovarian cancer vaulted me back into the powerful cancer system I had long lobbied to improve.
And there have been improvements—the Internet makes information and other patients easier and faster to find. The Taxol to treat ovarian cancer that I lobbied for back in 2003 has become the standard of care. There is immediacy and certainty about treatment (if not outcomes), at least for vicious ovarian cancers. A gynecological oncologist—the surgical specialty that improves the likelihood of a good outcome by about 30 percent over general surgery—saw me within two weeks of referral and surgery happened within six weeks. The nurses were emailing about old pathology and genetic reports weeks before my appointment, and answered my questions within hours—including on weekends. I was respected as an equal part of the process. But it was still as lonely and frightening as 30 years prior. Cancer had me by my “ladyballs” and it made me mad as hell. Again.
What is especially enraging the second time around is that many of the things we fought for beginning 30 years ago got worse, not better.
For example, weeks into my chemo, the Canadian Partnership Against Cancer released “Living With Cancer: A Report of the Patient Experience,” detailing experiences of more than 30,000 Canadians, and demonstrating that while cancer may be well treated, many Canadians experience serious preventable physical and emotional side effects of the disease. New research shows that as many as 30 percent of cancer patients develop PTSD within six months of diagnosis—a rate similar to that of combat veterans.
When we lobbied for a national cancer strategy in 2005, we outlined specific business goals to ensure that cancer patients’ needs would be better served by the health care system. Six years later, CPAC released a report outlining a framework for achieving those goals: “Pan-Canadian Guidance on Organization and Structure of Survivorship Services and Psychosocial-Supportive Care Best Practices for Adult Cancer Survivors.” The recommendations included standardized assessment for distress and referrals to counselling and support.
Thousands of cancer patients who developed PTSD since then didn’t have to.
Why didn’t the innovative Canadian model for health systems cancer care delivery—and its patient partner organizations—act more quickly in response to evidence?
Because they were mandated by the previous Harper government not to. Even though advocates played a large part in advancing the Canadian Strategy for Cancer Control, once it was funded, CPAC ended advocate input and put in place a taxpayer-funded, group to be a patient voice, without defined goals or outcomes measures. This mandate continues. In a recent evaluation of CPAC by Health Canada, the government underlines the importance of not assuming an advocacy role and not engaging with advocates or the public.
I believe that the absence of a strong advocacy voice and influence is why Canadians have grown apathetic, and are voting with their feet and decreasing donations to cancer groups, while the cancer plan is failing—and not just in the area of supportive care.
Federal support for the cancer plan was premised on preventing 1.2 million new cases of cancer and over 400,000 cancer deaths over the next 30 years. When we started our campaign in 2005, about one in three Canadians were facing cancer. Today, one-third of the way through that timeline, one in two Canadians will develop cancer in their lifetimes and one in four will die of the disease. And despite the preference of Canadians for preventing not curing cancer, data collected by the Canadian Cancer Research Alliance found that prevention only gets about two percent of research funding.
CPAC was supposed to kick-start and galvanize a new era for the cancer movement in Canada. By sidelining the powerful stories, urgency and analysis that embolden advocates to transform health care culture, by establishing a governance structure driven by the priorities of provincial government representatives, this government agency has by design, undercut the momentum, efficacy and legitimacy of the cancer movement in Canada.
This is wrong and it can’t be allowed to continue.
The solution will not come from within or from more government funding. Governments did exactly what the 700-member cancer sector asked of them, spending more than $700 million since 2006. This has not been enough, in the face of the competitive, fragmented efforts and lack of leadership from the hundreds of cancer groups in Canada.
I want the urgency that I feel as a patient, the fight to stay alive, to be mirrored in the army of cancer organizations, charities, and policy-making systems. I want the whole cancer industry to become powerful, single-minded agents of change, focused not on individual organizations or brands but on people and results.
With two cancers and 30 years of advocacy under my belt, I’m more committed than ever to reducing the risks of my kids—and now my grandkids—getting cancer and making the experience of cancer better for all the patients who follow me.
Which is why this festive April cancer season, I’m dropping the blasé and flinging my turban back in the fight.