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Improving Canadian Rare Disease Patients’ Access to Treatment

Sponsored by:
Sponsored by:

Sean McBride

National Director of Specialty Commercial Operations, Bayshore Specialty Rx

Bayshore Specialty Rx is on a mission to help rare disease patients across Canada gain access to the treatments they need.

Reducing the barriers to therapeutic access for rare disease communities 

People living with a rare disease face several challenges over their lifetime; delays in diagnosis for months or years after symptom onset, specialists can be far away, and the burden of treatment largely falling on patients themselves. The timely access to treatments can impact quality of life, and the treatments are often life-saving. Part of the problem Canada is facing is the inability to accurately track and allocate health care resources to communities lacking access. A concerted effort must be placed on data collection methods to monitor clinical and economic outcomes along patient-drug journeys to provide key insights to stakeholders for better health care delivery.   


Bayshore Specialty Rx is committed to partnering with industry, community, and medical stakeholders to provide access to innovative therapies through clinical trial support and patient support programs (PSPs). Dedicated home nursing and pharmacy clinical trial services create non-hospital and non-physician touchpoints allowing for early engagement with the rare disease patients, their families, and their physicians.  

Bayshore supports integrated pharmaceutical-sponsored PSPs once products are approved in Canada, streamlining a continuity of care from early investigation through post-market approval. The PSPs reduce the barriers imposed on patients by providing services to increase access to therapeutic options along with navigational support of complex public or private reimbursement systems, accelerating the timeline for patients to begin therapy. These metrics are particularly crucial during the early-launch phases to ensure products remain as a viable option in Canada.

Embracing the power of digital    

In partnership with technology leaders, healthcare practitioners (HCP), and community stakeholders, innovative digital technology integrated within the PSPs can help transform the delivery of health care to rare disease communities. Bayshore PSPs are at the digital technology forefront in supporting rare disease products by incorporating them into the Digital Gateway™ for patients and HCPs, remote patient monitoring, and service and quality of life surveys along the patient journey.  

Although not limited to rare disease therapeutic areas, Health Canada and health technology agencies like Canadian Agency for Drugs and Technologies in Health (CADTH), which are involved in assessing the clinical benefit and cost of drugs, are increasingly looking to real-world evidence generation (RWE) to inform them of the true benefit of various therapies. Real-world data is particularly valuable for rare disease products as clinical trials are often supported in a small number of patients over shorter trial periods and may not have appropriately sized comparative groups due to limited treatment options for these disease states. The rich ecosystem of data captured within the Bayshore PSPs can help industry partners and health care stakeholders in supporting medical, regulatory, and reimbursement decision-making processes by employing advanced analytics for RWE studies. By integrating digital platforms and machine learning technology to the PSPs, high-quality reportable data generated across the patient journey can help forecast and provide reasonable recommendations on health, safety, and economic resource utilization outcomes in the real world. With the collaboration of various stakeholders, key data insights from PSPs can help fill the void to provide access and health care delivery to the rare disease communities in need of life-changing therapies.  


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