Advocacy in Canada
Over the past few years, an unprecedented number of new treatments became available to Canadian myeloma patients. This progress is thanks to the efforts and collaboration of Myeloma Canada with its industry partners and advocacy groups across the country. There are several ways in which we strive to continue to ensure that the voice of patients is heard:
Sharing the patient perspective is key to influencing recommendations and reimbursement decisions of myeloma treatments by Health Technology Assessment (HTA) agencies such as pCODR and the Institut national d’excellence en santé et en services sociaux (INESSS), and provincial payers. One of the ways we meet this objective is by conducting patient and caregiver surveys to better understand the patient journey and relay valuable information to decision makers. We also facilitate phone interviews for patients and caregivers with industry partners in order to fully grasp the patient experience and gather their valuable input.
We conduct major surveys amongst patients and caregivers in Canada and in the US to evaluate disease impact on quality of life, patient needs, treatment expectations, and impact of new therapies. These surveys help populate Myeloma Canada’s patient submission to the pCODR.
We also help coordinate patient input on drug review processes carried out by Health Technology Assessment (HTA) agencies (pCODR and INESSS).
Many of the awareness programs we establish are also intended to facilitate access to new therapies via health policy development and drug reimbursement. The Awareness Day in provincial legislatures is an example of ensuring health policy makers are educated about myeloma, so that we are in a more favourable position to have drugs funded. The Myeloma Canada Advocacy Summit is another example of how we encourage support groups to mobilize their communities. This annual summit, attended by myeloma support group leaders from all over the country, helps develop tools and strategies to take action and help improve the ecosystem patients live in every day.
Myeloma Canada partners with other patient organizations and coalitions to drive change in the health care system towards a more favourable patient-focused environment.
We have partnered with aligned cancer groups to create an immuno-oncology network for patient organizations. The network’s goal is to promote a greater understanding of immuno-oncology and its value among policymakers, regulatory and HTA agencies, healthcare professionals, patients, and the general public.
We are also active internationally, as a founding member of the Global Myeloma Action Network (GMAN). The Global Myeloma Action Network brings together advocacy leaders to mobilize the myeloma community to improve the lives of patients around the world.
How to be Your Own Advocate
Our mission is to ensure that your voice is heard and we are committed to improving myeloma patient outcomes. To help us support you and achieve our mission, it’s important for you to help yourself first by becoming your own advocate.
There are two types of advocacy: personal advocacy and health system advocacy. Personal advocacy is when you become better informed about your condition, and take action to receive the best possible care for yourself. As a patient, you have the right to make decisions about your healthcare. In order to make a decision, you need to fully understand your options, including all of the benefits and risks. If you have questions, speak up. For instance, if your employee health plan does not cover a certain drug, ask your employer or human resources manager if the company can make an exception in your case. Or ask your employer if they would waive the cap on your drug coverage. Find someone to work with you to advocate for the drug coverage you need. This someone can be a family member, for instance, or a friend. And this person can continue to advocate for you even when you cannot.
Also, don’t forget to look for patient support groups in your area. Patient support groups can be valuable sources of information, support, awareness, and advocacy. At your hospital or cancer centre, ask whether there is a myeloma patient support group in your area, or check our Website. If there is no group in your area, consider forming one. We will give you information and support on how to start a patient group near you.
Health system advocacy is when you identify issues within your government health policy that need to be addressed and you take action that can benefit yourself, your loved ones and many others within the province or territory. An important aspect of advocacy is to speak up so that others understand what you need and how they can help.