Sustained efforts are needed to ensure ongoing, quality medical care for all Canadians, especially as the population ages. Advocacy refers to activities that promote improved health and access to healthcare through the efforts of individuals, medical professionals, organizations and government. We can all play a part. Whether the cause is cancer or some other serious illness, the issues are similar.
Charting progress in prostate cancer research
In 1997, the National Prostate Cancer Forum brought together researchers, health professionals, policy makers and survivors to call attention to the important, but under-funded, area of prostate cancer and to develop directions for future research, communication and advocacy activities. Recommendations from the forum set the framework for prostate cancer control in Canada, among them that men be made aware of the benefits and risks of early detection. Clinical guidelines for the use of prostate-specific antigen (PSA) tests were established.
Based on another forum recommendation, the Prostate Cancer Alliance of Canada was formed by many diverse organizations committed to filling the gaps in prostate cancer management. The Canadian Prostate Cancer Research Initiative (CPCRI) was launched to stimulate and support new prostate cancer research. In 2001, CPCRI funded the Canadian Prostate Cancer Bioresearch Network (CPC BioNet), a model for “team science” that linked researchers from five leading academic institutions to share ideas and resources.
Awareness grew with news of prominent Canadian figures being diagnosed with prostate cancer: former Prime Minister Pierre Elliott Trudeau, who died of the disease in 2000; Canadian Alliance MP Preston Manning and then-Health Minister Allan Rock, who both underwent treatment in 2001.
Ten years after the forum, CPCRI and the Canadian Prostate Cancer Network (CPCN) hosted the Prostate Cancer Conference 2007 under the banner “A Decade of Progress, A Future of Hope.” Leading Canadian prostate cancer researchers and clinicians, survivors and their families were invited to discuss advances in early detection and diagnosis, treatment, prevention and survivorship. Annual conferences continue to provide updates on the latest research and clinical advances.
Causes worth fighting for
Research
Research is key to improving outcomes. According to Cancer Research Investment in Canada 2007 (2008 hasn’t been published yet), only about $17 million of the total of $402 million was allocated for prostate cancer research. In contrast, over $54 million went to breast cancer research, which has a lower incidence of new cases than prostate cancer. On other fronts, since the amalgamation of CPCN with Prostate Cancer Canada (PCC) in 2009, fundraising efforts have been very successful. The 2010 Movember campaign raised more than $22 million. Additional funds are raised across the country during annual national Father’s Day Walk/Run events. Other events include the Terry Fox Foundation Run and Motorcycle Ride for Dad, which has donated more than $7 million to prostate cancer research.
Access to tests and treatment
Despite much progress, funding and access to diagnostic tests and treatments continue to present challenges. Governments have limited budgets and cost-cutting measures aren’t always in the best interests of all patients. For example, most provincial health programs still do not pay for PSA screening tests. Opponents claim that widespread testing results in a large number of biopsies, most of which turn out negative. A new test measures the amount of PCA3, a gene found only in prostate cancer cells, in a urine sample (see www.pca3.org/public for more information). Coverage of the PCA3 test by provincial health programs could improve prostate cancer detection and minimize the need for invasive and costly biopsies. Further, because cancer drugs aren’t uniformly covered across the country, not all Canadian men have equal access to new, potentially life-saving treatments.
Take action!
A diagnosis of prostate cancer starts off as a personal concern. But many people also wonder what they can do to benefit others. Here are some ways you can help yourself and others.
- Be an active member of a support group. Share experiences with treatments and strategies for coping with side effects.
- Get involved with local cancer agencies and cancer care institutions.
- Foster awareness in your community by holding exhibits at seniors’ seminars, farmers’ markets and similar events. Inform the local media and community cancer groups about what’s going on.
- Promote the importance of early detection through funded screening.
- Voice your opinion about cancer research that should be funded, new drugs needing faster approval, and how new therapies and technologies should be made available and reimbursed. Communicate with provincial and federal politicians to make them aware of what issues matter to you (see box).
- Participate in conferences and public forums on cancer-related issues.
Cancer coalitions in Canada
The Cancer Advocacy Coalition of Canada (CACC) is a not-for-profit group made up of volunteer oncologists, health executives and patients dedicated to advocacy, education and policy analysis. Their goal is to help build an “effective, comprehensive, evidence-based cancer system that offers Canadians the best chances for preventing and treating this disease and addresses the emotional, physical and financial needs of patients and survivors.” CACC publishes an annual evaluation of cancer system performance called the Report Card on Cancer in Canada. The coalition encourages people to learn about critical issues, share their opinions and experiences, and lobby for improved cancer care. To find out more, visit www.canceradvocacy.ca.
A Québec coalition, the Coalition Priorité Cancer au Québec, was formed in 2001 to give a voice to patients, survivors and their loved ones. Their aims include to: create an agency to coordinate the fight against cancer; develop a partnership between volunteer and community organizations and government; promote the broad principles of the Canadian Strategy for Cancer Control and the Canadian Cancer Action Network (CCAN). For information, go to www.coalitioncancer.com
Hans Vanderkley is Chair of the Prostate Cancer Canada Network (PCCN) Orillia Awareness group and past Chair of the Lindsay (Ontario) support group, a 10-year survivor and avowed advocate for prostate cancer.
