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Patient&Access Health Equity
Two Blueprints for Equitable Access to Medicines in Canada Canada’s National Pharmacare and Rare Disease Drug Strategy charts different paths to equitable access, with shared goals and unique challenges. Durhane Wong-Rieger
C Durhane Wong-Rieger President & CEO, Canadian Organization for Rare Disorders
ould the National Strategy for Drugs for Rare Diseases (SDRD) be a counterpoint to National Pharmacare (Pharmacare) in charting a pathway for public access to advanced therapies, particularly, those with potentially high impact and value but reliant on real-world data to validate benefits and risks? These paradoxical strategies toward universal equitable access to medicines share some commonalities. Both are implemented through bilateral federal/provincial/territorial agreements, and both designate a list of conditions and therapies that provinces should cover. Pharmacare Bill C-64, introduced in February 2024, prioritizes “appropriate use” and patient safety along with “optimizing health outcomes” and “health system sustainability.” The Bill allocates $1.5 billion over five years for universal, single payer coverage of primarily first-line diabetes medi-
cines and a variety of contraceptives. In contrast, the three-year $1.5 billion Rare Disease Drug Strategy (RRDS), launched in March 2023, mandates coverage of 12 advanced therapeutics targeted for severe and untreated rare conditions. These are potentially life-altering but uncertainties in clinical trial results require monitoring for safety and benefits in real-world usage. The RDDS aims for improved “access to new and emerging drugs” as well as investment in infrastructure to “support enhanced access to existing drugs, early diagnosis, and screening” and, critically, facilitate access as early as To learn more, possible, for better quality of please visit raredisorders.ca. life. Over time, genetically targeted therapies will become more prevalent for common conditions, Pharmacare may evolve toward the RDDS and the RDDS may become more universal with no co-pays.
The RDDS aims for improved “access to new and emerging drugs” as well as investment in infrastructure.
How New Treatments Expand the World for PNH Patients Breakthrough treatments for paroxysmal nocturnal hemoglobinuria (PNH) offer new hope and better quality of life for patients. Abigail Cukier
T
hough he loves to travel, Patrick Hanson usually limits his time away in case he catches a cold or needs a blood transfusion. Recently, however, he travelled to Europe for two weeks. The difference? Hanson is on a new treatment for paroxysmal nocturnal hemoglobinuria (PNH). PNH is a rare disease of the bone marrow. PNH causes fatigue, weakness, abnormally pale skin, shortness of breath, and an increased heart rate. People with PNH may also be prone to infections and abnormal blood clotting or hemorrhage.
Managing a difficult diagnosis
Learn more about other patient experiences with PNH, scan here:
Hanson had aplastic anemia for many years, which is a risk factor for PNH. Though the symptoms of the two diseases are similar, Hanson started to notice some new symptoms, including dark-coloured urine. His wife, Nina, did some research and told him to ask his doctor about PNH. Hanson says with aplastic anemia, he was dependent on blood transfusions to increase his hemoglobin levels and was getting one as often as every week. Hanson’s PNH treatment helped better manage his hemoglobin levels, but
they were still low and would drop every few weeks or months, when he would need another blood transfusion.
Reclaiming health and freedom “I was always monitoring whether I would need a blood transfusion. If I didn’t have an infection or a cold, my levels would stay up for longer,” he says. “That was why I would only go away for six or seven days at the most. When I changed medication this year, it changed my life. In a few weeks, I had more energy, and my hemoglobin levels were in a normal range. They hadn’t been for 20 years, so that was a miracle for me,” he says. Hanson wants other patients to learn from his experience and find hope in it. He says rare conditions like PNH don’t get a lot of attention and may not be the first thing that comes to mind for doctors. “It’s important to educate yourself and to advocate for yourself,” Hanson says. “Learn about new approaches, speak to your health care provider. It can change your life completely. There is hope.”
This article was made possible by Sobi Canada. Strategic Account Director: Anna Sibiga Senior Strategic Account Manager: Meredith Burt Head of Sales: Jessica Golyatov Content Strategy Manager: Nicole Kansakar Country Manager: Nina Theodorlis Production & Delivery Manager: Michael Taylor Creative Director: Kylie Armishaw Graphic & Web Designer: Christina Morgan Digital Media Manager: Karm Rathod. All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve The Toronto Star or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com.