Left Behind: Immunocompromised Canadians Living in the Shadow of COVID-19

As the world continues its return to pre-pandemic norms, many immunocompromised Canadians are still struggling to feel safe. Why aren’t we doing more for those left behind?

Bev W, just shy of 70 years old, may have retired as a public health nurse, but she’s unlikely to ever retire from community life. She has been a Girl Guide leader for many decades, volunteers for the Kidney Foundation of Canada, and is active in her local church. Bev is also immunocompromised due to a number of medical conditions which require immune-suppressing medication. For her, community engagement is a never-ending navigation of risk. This past autumn, she spent two weeks in the hospital after a C-Difficile infection, a bacterial infection which poses greater risk to those who are immunocompromised.

While vaccines can provide excellent protection for most Canadians, those who are immunocompromised may receive little to no protection due to their weakened immune systems. In essence, a weakened immune system cannot mount an adequate response to vaccines, which means it cannot create an immune memory leading to protection against infection.

With years having passed since COVD-19 made its appearance on the world stage, both public health measures and individual efforts have waned to the point where the world resembles its pre-pandemic self – even though COVID-19 remains a leading cause of hospitalization across the country.

Bev, who “still wears masks everywhere,” has felt the shift in the public’s willingness to prevent infection acutely. She’s experienced it in the hospital, a setting particularly concerning for immunocompromised individuals, who cannot avoid these spaces and who are at a higher risk for severe outcomes.  “When I was in the emergency department, there was only one person around us who was masked. Even when admitted to an isolation room in the hospital, healthcare workers might come to my room without being masked.” She adds, “there’s a power imbalance in hospitals.  I’m not comfortable asking [healthcare workers] to mask to protect me because my health is in their hands.”

Bev is certainly not alone in believing much more could be done both in policy and individual action for those across Canada who are immunocompromised.

In response to some of the concerns faced by immunocompromised Canadians, in 2022 the Canadian Immunocompromised Advocacy Network (CIAN) was formed to raise awareness and advocate for this population. CIAN is comprised of patient advocates and organizations representing a range of immunocompromising conditions.

Late last year, CIAN created a position paper that has four main calls to action to support immunocompromised Canadians:

• Increased and ongoing knowledge generation and dissemination around COVID-19
• Greater alignment on definitions of immunocompromised across Canada
• Targeted infection control measures (e.g., masks in healthcare settings) to protect immunocompromised patients
• Easier and more equitable access for prophylactic and therapeutic options for COVID-19 and other potential infectious diseases or pandemic pathogens.

While some shrug off COVID-19, saying “life has to go on,” Bev believes that a return to normal can happen in conjunction with care for those who are vulnerable.

Bev points out the difference between how we care for those with severe nut allergies versus those who are immunocompromised.  She has advocated for long-term mask wearing at her church, particularly when there is singing (known to increase risk of infection)^[1] without traction. “Our church has a zero-tolerance policy around peanuts to protect people with life-threatening  nut allergies, but we won’t do similar things to protect immunocompromised people.”

 Like other vulnerable individuals, Bev must navigate daily life by assessing risk and taking many precautions to protect her health. She is vaccinated according to NACI recommendation, opts to shop or go to hair appointments during off-peak hours, will avoid visiting friends’ houses, socializes outside where possible, and masks.

Bev believes policy needs to change, but individuals have a part to play too. “Masking in public spaces could make a very big impact.  It will protect you, but others too. It’s common courtesy.”

Individuals can protect their health and that of others by staying up to date with vaccinations and boosters (did you know there are updated guidelines on Spring 2024 boosters?) , masking in high-risk public spaces when levels of circulating virus are high, and staying home when sick.  You can read more about how to protect yourself (and others) from COVID-19 here.

Without support from policy, individuals and communities, Bev says, “it feels like seniors and immunocompromised people are just baggage on society.”

The Canadian Association of Retired Persons (CARP) and other advocates like Bev hope once those who are healthier understand the impact on individuals who are immunocompromised, they will be more willing to make small changes, and ready to advocate for policies that do as well.

A recent CARP survey had promising results: 65% of all non-immunocompromised respondents believe that immunocompromised Canadians should have additional protection and support in dealing with COVID-19. Perhaps as Bev’s voice and others are better heard, that number will rise.