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MARCH 2025 | HEALTHINSIGHT.CA
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2025:
A SPECIAL INTEREST SECTION BY MEDIAPLANET
Rare Disease
Canada Still Only Developed Country with No Rare Disease Plan To truly help rare disease patients, Canada must turn promises into action and funding. Durhane Wong-Rieger, PhD President & CEO, Canadian Organization for Rare Disorders
ONLINE EXCLUSIVE
Eosinophilic Esophagitis: Urgent Need for Better Access to Treatment
I Innovative Pathways to Improving Access to Treatments for Rare Diseases Innovative patient support programs and data-driven solutions are improving access to life-saving rare disease therapies in Canada. Niki Bellefontaine
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atients with rare diseases face significant barriers in accessing innovative therapies. High drug costs and challenges in conducting research with smaller patient populations hinder development and timely access. Limited clinical data also complicates evaluations by health technology agencies (HTAs), adding uncertainty to the economic valuation of treatments. Many Canadians with rare diseases rely on treatments that are not approved by Health Canada through Health Canada’s Special Access Program (SAP). Bayshore Specialty Rx works with manufacturers and specialist clinicians to leverage the national network of pharmacy and nursing support services to support SAP rare disease patients.
outcomes-based submissions, which are increasingly being accepted by HTAs due to limitations in clinical data. Bayshore implementation teams collaborate with manufacturers to identify evidence gaps and design PSPs that capture high-quality data for future submissions to private and public drug plans. Outcome measures, such as quality of life, are collected through omnichannel solutions at key treatment touchpoints to support payer negotiations. Advanced technology like MyBayshoreCares, Gateway, and Alida enables reliable data collection. Real-world evidence, coupled with advanced analytics and linkage with external economic utilization measures, provides powerful tools to inform manufacturers’ strategies and support reimbursement decisions.
Supporting rare disease patients Manufacturer-supported patient support programs (PSPs) like those provided through Bayshore Specialty Rx represent another critical pathway for rare disease patients to access medications that are approved by Health Canada but not yet funded through drug programs. Bayshore-supported PSPs assist manufacturers in gathering data to support value and
To learn more, visit bayshorespecialtyrx.ca.
This article was sponsored by Bayshore Specialty Rx.
n 2015, the Canadian Organization for Rare Disorders (CORD) presented to the federal government a National Rare Disease Strategy. In March 2023, the federal government announced $1.5 billion over three years for a Rare Disease Drug Strategy, with $1.4 billion in provincial/territorial agreements. Provinces need to cover only one drug from a “common list” of 12 drugs in the first two years and assume 10 per cent of funding by year three. However, monies saved from provincial budgets need not be redirected to other rare disease services. The $1.4 billion will result in almost no net benefit for persons living with rare disease, unless governments take a different course of action now. Healthcare professionals are planning to coordinate care under the Canadian Rare Disease Network; the patient community, led by CORD, is engaged in research, clinical trials, registries, and evidence development; and advances in genetics and digital technology are creating unprecedented opportunities. The time is now for Canada to catch up with and surpass the world with national, provincial, and local programs for rare disorders. As we approach another election, 2025 is critical. It will be much worse if we squander the $1.4 billion and fail to invest in comprehensive rare disease plans focused on improving Canadians' lives.
To learn more, visit raredisorders.ca.
Publisher: Jessica Golyatov Content Strategy Manager: Nicole Kansakar Country Manager: Nina Theodorlis Production & Delivery Manager: Michael Taylor Creative Director: Kylie Armishaw Digital Designer: Miranda Robinson Digital Media Manager: Karm Rathod All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve Maclean’s Magazine or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com.