The COVID pandemic has had devastating effects on our society and on human health and mortality. Over the past two years, evidence has emerged to suggest that the impacts of COVID-19 extend beyond the acute phase of the disease which, in some infected individuals, can turn into a chronic illness. In Canada, as of August 2022, more than 1.4 million people – or about 14.8 per cent of adults who have contracted COVID-19 – say they experience symptoms three months or more after their initial infection. These include respiratory, cardiovascular, neurological and cognitive impairments and they can be debilitating.
These symptoms are collectively identified as post-COVID-19 condition (PCC), or long COVID. Currently, there is no consensus definition of the condition or its diagnosis and few if any clinical practice guidelines are available. Globally, data for different countries consistently show that 10-20 percent of infected individuals experience PCC. People suffering from the condition receive standard of care for medically defined symptoms (e.g., cardiovascular complications) but for the many who suffer from other broad or medically undefined symptoms (such as chronic fatigue or brain fog), little other than rehabilitation therapy is presently offered. Several international clinical trials are ongoing to test new treatments or the benefits of existing repurposed medications. With the pandemic and the virus still spreading, PCC is likely to affect many more Canadians. Interestingly, COVID-19 vaccines significantly reduce, but do not eliminate, the risks of developing PCC.
The biologic basis for the complex symptoms and conditions seen in PCC remains unknown and represents a major impediment to diagnosis and care of individuals suffering from the condition. Disease mechanisms may include effects on specific organs, systemic effects due to chronic inflammation and deregulation of the immune system or persistence of viral proteins or RNA in host cells. Known risk factors include female sex, hospitalization due to COVID, pre-existing chronic health conditions, and repeated SARS-CoV-2 infection.
In addition to health, PCC has a significant socioeconomic impact on individuals and communities. Among other things, PCC impacts the labour market, the workplace, and social support programs. The lack of defined diagnostic criteria and treatments together with the modest awareness of the condition is leading to stigma and disbelief, further affecting the mental and physical health of individuals living with PCC and their families.
In this context, Canada’s Chief Science Advisor established a multidisciplinary task force in July 2022 to investigate and advise on ways to address post-COVID-19 condition in Canada. The product of their deliberations is a report that took into account existing scientific literature, published evidence, experience of service providers and the perspectives of people with lived experience. The report also proposes an integrated framework for the management of PCC in Canada.
The recommendations include ensuring that research be interconnected with PCC clinical service delivery as part of a continuous learning framework; that services be developed and tailored to people and their families living with PCC, recognizing that females disproportionately suffer from PCC; and that sustainable human and physical infrastructure be put in place to support PCC management, prevention and research. These are integral to the broader effort of pandemic preparedness.
Below are the Task Force’s recommendations.
- Establish PCC diagnostic criteria and develop clinical practice guidelines for health professionals, in collaboration with national and international partners.
- Develop, make available and consistently apply specific PCC diagnostic codes at all points of care to accurately track PCC cases in Canada and support the effective delivery of clinical services.
- Provide timely and equitable access to person-centered care pathways for individuals living with PCC across the health care continuum regardless of ability, age, gender, geographic location or socio-economic or cultural background.
- Develop a federal, provincial, territorial (FPT) long-term integrated research strategy for infection-associated chronic conditions, including PCC, that articulates clear priorities, considers both adults and children, and supports pandemic preparedness.
- Establish a Canada-wide research and clinical care network for PCC and other similar post-infection chronic conditions to harmonize and coordinate efforts nationally and internationally.
- Quickly advance five targeted priority research areas: (i) patho-physiology/biologic mechanisms and risk factors; (ii) development of therapeutics; (iii) evidence-based prevention; (iv) clinical and translational research; and (v) socio-economic impacts of PCC.
- Modernize relevant policies and eligibility criteria to maximize the participation of people living with PCC in society, along with necessary supports and services.
- Develop resources and tools that respond to the needs of people living with PCC, their caregivers and their dependents, in partnership with persons with lived experience and community groups.
- Acknowledge that PCC is real by raising awareness through outreach to citizens, schools and workplaces.
- Develop and continuously update a web-based platform that lists available government services for individuals affected by PCC and their families.
- Develop, regularly evaluate, and adapt the effectiveness of PCC educational approaches for health care providers, particularly primary care.
- Empower Canadians to make informed decisions about prevention of SARS-CoV-2 infection and PCC, as the science evolves.
- Establish a multidisciplinary scientific advisory council on infection-associated chronic conditions, in collaboration with the Office of the Chief Science Advisor, to support an integrated research strategy.
- Set up a whole-of-government PCC coordination structure within the federal Health Portfolio to engage and coordinate with internal and external partners, including levels of government, the private sector, and patient groups.
- Enhance the timely capture and sharing of data and the use of state-of-the-art data analysis strategies for improving the management of PCC and evidence-informed policy.
- Strengthen the human, digital and physical infrastructure that interconnects and supports research, care and emergency preparedness.
- Scale-up and monitor effective prevention interventions, such as improving ventilation in schools, workplaces and public places as part of a first line of prevention of SARS-CoV2 infection and other respiratory/airborne pathogens.
- Encourage innovation in PCC care models and evaluate them to inform future resilience in the health care system including the recruitment and retention of a thriving health care workforce.
The current pandemic is not the first, nor will it be the last. A legacy of learning from PCC and the current pandemic should include strengthened infrastructure, systems, epidemiological surveillance, data collection and sharing, and effective governance for coordinating actions and communications. Such efforts that include physical and human infrastructure, the built environment and common platforms and pan-Canadian networks will serve to enhance our preparedness and response to future outbreaks and emergencies.