The Canadian Immunocompromised Advocacy Network (CIAN) – advocating for immunocompromised people across Canada

In the spring of 2022, even as COVID-19 restrictions were being lifted across the country (and the world), there was still a great deal of concern from immunocompromised patients about how they navigate the ‘post-pandemic world’. In response to this need, a patient action group comprised of nine organizations convened to discuss issues facing immunocompromised Canadians. This initial group evolved to become the Canadian Immunocompromised Advocacy Network (CIAN), which now has 11 patient groups and 4 individuals with lived experience.

Initially, the group focused on improving access and awareness of Evusheld, a prophylactic antibody designed for immunocompromised patients who were known not to respond well to COVID-19 vaccines. By late 2022, COVID-19 variants had changed and were no longer susceptible to Evusheld. However, the group still felt there were many issues facing immunocompromised people and so the focus of CIAN broadened to other issues, including access to information around COVID-19 to inform individual decision-making and a recognition that COVID-19 is still affecting people even if much of society had moved on.

A critical part of what CIAN is always trying to do is to understand the perspectives of the very diverse group of immunocompromised Canadians to know what issues to focus on. To that end, CIAN was fortunate to be able to participate in a survey run by the Canadian Association of Retired Persons (CARP).

This survey, which ran in the spring of 2023, had 2,945 respondents from across the country, of which 88% were 65 and older and 26% reported being immunocompromised in some way. Some key findings were:

• 80% of immunocompromised respondents were somewhat or very concerned about COVID-19, compared to 64% of the non-immunocompromised respondents.
• 76% of immunocompromised respondents felt it was very important (9 or 10 on a 10 point scale) for immunocompromised Canadians to have additional protection/support in dealing with COVID-19, as compared to 65% of non-immunocompromised Canadians.
• Twice as many immunocompromised respondents (40%) respond feeling anxious compared to non-immunocompromised respondents (20%) when it comes to COVID-19.
• 65% of immunocompromised respondents report that COVID-19 is significantly impacting their day-to-day life as compared to 43% of non-immunocompromised respondents.

Ultimately, the survey showed that the immunocompromised population was in need of additional supports to deal with COVID-19 and return to life as normally as possible. With information from this survey and interviews with our coalition members, CIAN drafted a position paper outlining four important calls to action around COVID-19 and other diseases.

• Increased and ongoing knowledge generation and dissemination around COVID-19
• Greater alignment on definitions of immunocompromised across Canada
• Targeted infection control measures to protect immunocompromised patients
• Easier and more equitable access for prophylactic and therapeutic options for COVID-19 and other potential infectious or pandemic pathogens

One of the things COVID-19 uncovered is that there is a whole population of Canadians who had previously been dealing with often invisible conditions in the shadows and who had to advocate for themselves during and after the pandemic. While the vast majority of people have had the luxury of moving on from COVID-19, many immunocompromised Canadians have not, which means further advocacy is required. CIAN’s work in Canada parallels work that is being done globally through organizations like the International Immunocompromised Advocacy Network (IIAN), which was founded in the summer of 2023 and seeks to advocate on behalf of immunocompromised people globally, with a strong presence in Europe.

Efforts by CARP and CIAN ensure that the light still shines on the ongoing challenges of the communities they serve.  While there is understanding that the task of advocating for supports related to COVID-19, as the majority of society puts it in the rearview mirror, is ambitious, CIAN is made up of high-energy and laser focused organizations and advocates who are determined to make a difference.  In 2024, they look to mobilize their network to close the identified gaps of the immunocompromised community as it relates to the calls to action defined in the 2023 position paper.  CIAN is committed to not only improving the overall quality of life for immunocompromised Canadians, but also to collaborating and supporting their network members with important resources to inform their constituents and advocate for equitable and timely access to life saving therapeutics. You can find out more about CIAN and immunocompromised Canadians and read the position paper at www.carp.ca/protect/.