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COVID-19 Impact on Canadians with Rare Diseases

At the end of April, The Canadian Organization for Rare Diseases (CORD) sent out a survey to Canadians with rare diseases and received over 300 responses within a few days 1. This survey indicated that COVID-19 has significantly impacted Canadians with chronic conditions and rare diseases. COVID-19 has particularly affected Canadians with underlying conditions that affect their immune system or conditions that impact their cardiac or respiratory systems. As provinces across the country now deal with increasing COVID cases, that in some cases exceed those of this past spring, concerns have heightened.

Notably, many treatments for rare diseases and other conditions have been put on hold, including surgeries that are deemed 'elective.' A new study released by the British Journal of Surgery indicated that nearly 400,000 operations across Canada would have been cancelled or delayed by mid-June due to the COVID-19 pandemic 2. The study suggests that this backlog could take over a year to clear, increasing wait-times even further across Canada. However, what is especially concerning is that many of these surgeries are not 'elective.' Instead, a large proportion of these surgeries are not aesthetic procedures, as one might be led to believe 3. In fact, cancer and transplant surgeries are among those that have been deemed 'elective.' These types of operations are often very time-sensitive and are usually also condition-sensitive. People prepare for these surgeries for weeks ahead of time, often requiring a specific course of preparation.

Furthermore, transplant surgeries are dependent on the availability of matching organs or cells, and therefore, people usually wait for a transplant match for years. This delay of time-sensitive 'elective' operations can - and has - lead to a deteriorating quality of life and worsening health conditions, leading to preventable deaths. Further, "when hospitals fully resume elective activities, patients are likely to be prioritized by clinical urgency, resulting in lengthening delays for patients with benign but potentially disabling conditions where there may be less of a perceived time impact" 2.

These concerns are evidentially at the forefront of the concerns faced by Canadians with rare diseases. The CORD survey results indicate that half of the respondents reported difficulty receiving access to necessary medical care, which includes cancelled surgeries and discontinued or delayed blood work, dialysis, and physiotherapy treatments. Additionally, half of the respondents indicated that they were facing difficulty accessing rehabilitation or critical services, including personal support care work. Many individuals with significant mobility issues were no longer able to receive care from their personal support workers out of fear of the individuals or their support workers that they may be exposed to COVID-19. An additional concern that continuously emerged through the CORD survey was that over forty-percent of Canadians have had difficulty accessing their medications. Some medications are no longer available such as amoxicillin (an antibiotic used to treat those at high risk of bacterial infection) and hydroxyurea (a drug used to treat cancer, sickle-cell disease, and some other rare conditions). Additionally, other medications were only available in partial dosages or were substituted for similar drugs. In July, many provinces imposed a 30-day limit on the supply of prescription drugs, meaning that individuals would be required to pick up their prescriptions on a monthly basis 4.

These access issues concerning a range of medications and treatments for rare disease patients due to COVID-19 is echoed by availability challenges for those who still lack specified medicines for their condition. This past June, Global Genes (a network organization of "advocates, partners and collaborators who are relentless in our efforts to affect change" in rare diseases held a two-day interactive event in partnership with The Penn Medicine Orphan Disease Center that focuses on educating both beginners and advanced participants on the drug development process in the form of the RARE Drug Development Symposium 5. At that event, one of the recurring themes was the impact that COVID-19 has had on research efforts in the area of rare diseases. Many of the researcher's presentations lamented on the fact their orphan disease work either had to be placed on hold because their labs were completely closed or because all research efforts were pivoted to focus on alleviating the pandemic. Some of those researchers became actively involved in vaccine research. In contrast, others had to take upon themselves to document and track the range of international research efforts being deployed towards vaccine development.

Overall, Canadians with rare diseases and global citizens alike have been significantly impacted by COVID-19 in many unimaginable ways. As this pandemic continues to affect the world, the negative implications persist. What will be interesting to track is how quickly the research, development, and deployment of drugs for rare diseases resumes. Furthermore - and perhaps the topic for a different blog - once a vaccine(s) for COVID-19 has been developed, it will be essential to analyze how they are distributed. Our view of social pharmaceutical innovation is one that is characterized by an approach for addressing social or environmental vulnerabilities such as health inequalities and unmet medical needs. Furthermore, we see social pharmaceutical innovation involving partnerships between private companies, public institutions and diverse concerned groups. Finally, our view of social pharmaceutical innovation is one that is not primarily driven by profit-making; instead, it aims to generate positive social and environmental impacts or prevent negative ones. While it seems as though vaccine research for COVID-19 has the feature of the former two elements of social pharmaceutical innovation, it is yet to be seen as to whether it will feature the latter.



1. Wong-Rieger, D. (2020). Applying lessons from COVID-19 to better healthcare for rare diseases. Toronto: Canadian Organization for Rare Disorders.

2. COVIDSurg Collaborative. (2020). Elective surgery cancellations due to the COVID-19 pandemic: Global predictive modelling to inform surgical recovery plans. BJS Society , 2020 (1), 1440-1449.

3. Trevithick, M. (2020, May 15). COVID-19 pandemic to affect nearly 400,000 elective surgeries across Canada by mid-June. Global News.

4. Ferreira, J. (2020, June 12). 30-day limit on prescription refills lifted in most provinces. CTVNews.

5. GlobalGenes. (2020, June 1). RARE Drug Development Symposium. Retrieved June 1, 2020 from Global Genes:


Written by: Conor Douglas (PhD) and Shir Grunebaum (MA)

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