Drug Approval and Funding Process in Canada If you think that deciphering how prescription medicines are approved and funded in Canada is akin to learning a new language, you’re right. It incorporates a combination of multiple processes and variations on those processes, and is complicated and complex. Just figuring out
Every year, hundreds of new clinical trials are initiated to test new “experimental” drugs, or to test new uses of already approved drugs on humans, in a wide range of disease areas. These trials are conducted by researchers in countries all around the world, including Canada, in locations like hospitals, universities, doctors’ offices, and community clinics. Through voluntary participation in clinical trials, patients get a chance to take part in research that could improve their health and help them access a drug, prior to its approval. Like all drugs, the ones used in clinical trials have potential benefits as well as risks, and since they are still being studied, there is usually limited information about safety and efficacy. Before deciding to take part in a clinical trial, discuss the potential risks and benefits with your health care provider, so that you can make an informed decision about your health.
In the fall of 2016, the Patented Medicine Prices Review Board (PMPRB) requested input from stakeholders and interested members of the public on the PMPRB Guidelines, to ensure they remain a relevant and effective tool for protecting consumers from high drug prices in a dynamic and evolving pharmaceutical market. In response, the Canadian Association of PNH Patients (PNHCA) provided a submission and it was included in the PMPRB Guidelines Modernization Discussion Paper, which is now available on the PMRPB website. PMPRB received 66 submissions representing more than 500 different organizations, including patient groups, provincial health authorities, academics, private insurers, patentees, health professionals, employers, unions, and advocacy groups.
Travelling with PNH? New travel protocol now available! If you have PNH, it is important to plan ahead for any upcoming travel – be it for work, holidays or personal reasons. Apart from the usual things to think about when travelling, having PNH means you also need to consider: Your
Over the past month, the Canadian Association of PNH Patients (PNHCA) has been working hard to share the story of Konrad Krzeminski, a 20-year-old PNH patient living in Poland who requires urgent publicly funded access to the life-saving treatment, eculizumab. PNHCA has been advocating to the Minister of Health in Poland on behalf of Konrad and his family, and assisting them to tell their story through the Polish media and over Facebook where we reached more than 14,000 people worldwide.
Konrad Krzeminski is a 20-year-old PNH patient living in Poland who requires urgent access to the life-saving treatment, eculizumab. Konrad’s relatives in France discovered the Canadian Association of PNH Patients’ website and reached out, looking for support. Since then, PNHCA has been providing advocacy support to Konrad and his family in a variety of ways.
A company that is developing a new treatment for PNH has created an online patient survey to help the company better understand the experiences, perspectives, and unmet needs of Canadian PNH patients. The Canadian Association of PNH Patients has been asked to contact patients across the country to respond to this survey.
The New England Journal of Medicine (NEJM) recently published a study focusing on the use of Soliris (eculizumab) in pregnant patients with paroxysmal nocturnal hemoglobinuria (PNH).
On February 6, 2015, Dr. Nigel Rawson, Ph.D., published an article in the journal of the Canadian Health Policy Institute which speaks to the importance of patient group advocacy and support, given today’s healthcare environment in Canada. He also speaks to the shortcomings of the Canadian drug approval and review processes when it comes to funding rare disease treatments. Patient support group aHUS Canada and their efforts to secure publicly-funded access to eculizumab, the same life-saving drug approved for the treatment of PNH, are detailed in the piece.
The Canadian Association of PNH Patients is looking to gauge the interest of members of the PNH community from across the country in attending a group meeting for patients and their caregivers in Toronto this April.