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How Patient Support Services Bolster Up Canada’s Rare Disease Strategy

Sponsored by:
Sponsored by:

Nicole Bellefontaine

Senior Clinical Research Program Manager,  Bayshore Specialty Rx


Bayshore Specialty Rx is a strategic partner in the implementation of Canada’s new National Strategy for Drugs for Rare Disease.

For the 1 in 12 Canadians living with a rare disease and their families, access to groundbreaking therapeutic innovations comes with a high cost. In addition to the time and financial burden of travelling to specialists, drugs used in the treatment of rare diseases can range from $100,000 to more than $2 million per year1. As most rare diseases result from genetic mutations, the drugs used to treat these individuals are often needed for life. In March 2023, the Canadian government made a pivotal step in announcing the first National Strategy for Drugs for Rare Diseases, which is designed to improve the equitable access and affordability of drugs used to treat rare diseases2.

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A strategic ally

Successful implementation of the strategy necessitates engagement among numerous stakeholders. Bayshore Specialty Rx acts as a strategic ally for the implementation of the strategy by providing comprehensive patient services through manufacturer-supported patient support programs (PSPs) and special access programs (SAPs). 

The delivery of health care remotely and the collection of patient-caregiver feedback through digital innovations such as Bayshore Digital Gateway™ and MyBayshoreCare™ will be critical in obtaining key health and quality-of-life outcomes.

Bayshore PSPs, in collaboration with industry partners, are designed to alleviate several challenges faced by rare disease patients and their caregivers through the navigation of public and private benefits and the coordination of clinical requirements related to drug administration. Nationwide infrastructures for the distribution of drugs and patient care are important considerations for equitable access to rare disease therapies. Bayshore Specialty Pharmacy and Nursing Services are equipped to provide national product-specific distribution of these drugs and flexible nursing services provided in alignment to individualized treatment schedules to support patients in their unique needs. The coordinated approach ensures timely access and contributes to better drug adherence, promoting the best patient outcomes and health care system sustainability. 

Embracing digital innovation 

Digital health solutions need to be adopted, as a strategic effort must be made to monitor successful patient outcomes to ensure these drugs remain a viable option in the Canadian market. The delivery of health care remotely and the collection of patient-caregiver feedback through digital innovations such as Bayshore Digital Gateway™ and MyBayshoreCare™ will be critical in obtaining key health and quality-of-life outcomes. Bayshore has made significant advancements to integrate data across multiple platforms to provide a comprehensive overview of the patient journey. Crucial insights gathered from the PSP real-world setting can drive evidence-based outcomes, payer and regulatory conversations, and submissions to expand access to life-changing drugs.   

Facilitating access to innovative therapies

SAPs also facilitate access to innovative therapies for rare disease patients, even when a drug is not yet approved for use in Canada. Although SAPs are approved on a case-by-case basis, manufacturers must be able to provide access to the drug and adhere to strict reporting regulations. Pharmaceutical partners have already begun to leverage the existing Bayshore support services, digital platforms, and national infrastructure to support rare disease SAP patients.  Concurrently, the high-quality data capture by Bayshore allows manufacturers to meet regulations for SAPs. Information garnered from the SAP can be used to drive equitable access should the treatment receive approval for use in Canada. 

With key stakeholders, Bayshore Specialty Rx will be an instrumental partner in providing equitable access and improving patient outcomes for rare disease patients.  


To learn more, visit bayshore.ca/bsrx.

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Resources
1 A Prescription for Canada: Achieving Pharmacare for All. Health Canada. June (2019). https://www.canada.ca/en/health-canada/corporate/about-health-canada/public-engagement/external-advisory-bodies/implementation-national-pharmacare/final-report.html#2
2 Government of Canada improves access to affordable and effective drugs for rare disease. Health Canada. March (2023). https://www.canada.ca/en/health-canada/news/2023/03/government-of-canada-improves-access-to-affordable-and-effective-drugs-for-rare-diseases.html

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