Independent Voices for Safe & Effective Drugs (IVSED) is a pan-Canadian organization whose members include academics, researchers, healthcare providers and patient and consumer advocates. We have expertise in pharmaceuticals and Canada’s health policies in many disease areas including diabetes, drugs for mental health and sleep problems, dementia-type illnesses, rare diseases, breast cancer, and pediatric health conditions. As individuals with a long history of engagement, research and advocacy in health care, we came together to pool our knowledge and resources to collaborate and build a stronger voice, free of industry influence, for independent and objective solutions for safe, effective and affordable medicines in Canada.
For the past two decades in Canada, patient groups funded by pharmaceutical companies have dominated public conversations about the effectiveness and safety of prescription drugs. These groups receive unrestricted educational grants enabling them to develop websites and materials, to meet with Health Canada and to participate and speak at conferences in order to lobby on behalf of interests that parallel those of pharma.
During this same time period, Health Canada has stripped funding from many non-profit organizations that maintain their independence from the pharmaceutical industry and which are also concerned with drug safety and effectiveness. This has led many groups that see their role as providing a countervailing voice to commercial interests to close their doors or to drastically reduce their activities.
To address this imbalance, a new voluntary group made up of patients and caregivers who are deeply concerned about drug safety and effectiveness has been formed, Independent Voices for Safe and Effective Drugs (IVSED).
PHILOSOPHY AND VALUES
We believe that:
Canadians are entitled to commercial-free, accurate, evidence-basedand understandable information about the effectiveness, safety and costs of prescription drugs
Canadians, wherever they live in Canada,should have access to a universal national pharmacare program that provides access to prescription drugs that have the best evidence for safety and efficacy and that are available at a reasonable cost
IVSED MEMBERS INCLUDE:
Alberta. A community-based researcher, policy analyst and consumer advocate. Her focus is on how changing healthcare and societal landscapes influence the safety, effectiveness and pricing of heavily marketed drugs and new medical technologies as well as the importance of tools and strategies to help Canadians negotiate these landscapes.
PhD, Halifax. Journalist and qualitative researcher with a focus on health ethics and pharmaceutical policy. Special expertise in breast cancer treatments and breast cancer groups. Research on how pharmaceutical company funding of patient advocacy groups distorts information and health policies.
MSW, PhD, Edmonton and Vancouver. Long term medication safety advocate with specific expertise in drugs used for mental health problems, and the of drugs for women and older Canadians. Her PhD, completed in May 2021, focused on the safety issues associated with the widespread use of drugs prescribed off-label (prescribed by a physician for a particular use not approved by Health Canada).
Vancouver. Qualitative researcher, writer and consultant in health policy. Expert on the role of the pharmaceutical manufacturers in the development and commercialization of insulin therapy for Type 1 and Type 2 diabetes in Canada and internationally.
Ph.D, Montreal. Particular expertise on the educational needs of persons with dementia and their families, dementia care and research ethics.
Vancouver. Long-time public health and affordable housing advocate. Expertise in non-profit administration, communications and development.
Ontario. An undomesticated advocate raising awareness about cystinosis, a rare disease that her daughter lives with. She fights for pharma transparency and protecting parents and caregivers from using unsafe and excessively expensive prescription drugs.
DR. NANCY OLIVIERI
Ontario. A hematologist, clinical researcher and Professor of paediatrics, medicine and public health sciences at the University of Toronto. Her experience with a drug in which she conducted original clinical trials became the focus of one of Canada’s most prominent and ongoing medical research scandals, and led to her experience at the European Medicines Agency in which she challenged its licensing at the European Court of Justice, Health Canada and the US FDA where the licensing of this drug, like Aduhelm, was highly controversial.