The economic, social and health consequences of long COVID on patients and health systems are substantial and set to remain, and therefore require a comprehensive policy approach to mitigate their impact. This chapter explores the strategic levers to improve the response and coordination of health and social care systems to long COVID, by focusing on delivery of patient-centred and integrated healthcare. The policy options set out how the example of long COVID makes the case for building resilient and patient-centred health systems, capable of adapting to and absorbing the burden of future health threats which may arise in the population.
Addressing the Costs and Care for Long COVID
The Long Shadow of the Pandemic
Abstract
Based on the OECD’s analysis, long COVID affected about 5.3% of the total population across OECD and EU countries in 2021, equivalent to roughly 75 million people. The estimated burden varied sharply, ranging from almost no cases in New Zealand and Japan to around a 16% prevalence in some Eastern and Central European countries. Looking ahead, projections suggest that – depending on the ongoing incidence of COVID‑19 – long COVID prevalence could stabilise at around 0.6‑1.0% of the OECD population until 2035, unless virus circulation ceases entirely. In 2021, the condition imposed substantial costs on health systems – about USD 53 billion across OECD countries, representing around 0.6‑0.8% of total health expenditure (approximately USD 21 per capita). While these costs are expected to decline after the acute pandemic phase, even conservative projections indicate that this condition might cost up to USD 11 billion annually in continued healthcare expenses under pessimistic long-term scenarios.
Long COVID also had a significant macroeconomic impact, reducing OECD countries’ effective labour force by roughly 0.9% in 2021. This reduction in workforce participation and productivity translated into GDP losses averaging around 0.9‑1.0% across OECD economies – equivalent to USD 680 billion in 2021. Projections to 2035 show that while GDP losses may fall to negligible levels under optimistic assumptions, more realistic scenarios predict persistent yearly losses of 0.1‑0.2% of GDP, corresponding to USD 68‑135 billion annually across OECD countries.
These findings suggest that long COVID is likely to continue to represent a structural drag on productivity and growth in OECD economies throughout the coming decade; it therefore requires serious and comprehensive policy attention.
With the number of patients suffering long-term effects from long COVID and the COVID‑19 virus in circulation via new and mutating waves, the policy challenges of dealing with the condition from a health and social perspective are here to stay. Furthermore, in the context of long COVID as one of several PAIS, which have been persistent and problematic for many years, approaches to address long COVID effectively have much broader application. This is reflected in the recent update in the Netherlands Parliament on the response to PAIS (including long COVID) (Government of the Netherlands, 2025[1]).
The policy mapping survey described in Chapters 4‑7 provides an update on the status of long COVID initiatives under way in OECD countries in 2025, five years after the COVID‑19 pandemic began. As a new and emerging condition, long COVID posed a double challenge to health systems in the need for both a scientific evidence base to inform effective clinical management and health policies, and the need for adaptation or reorganisation of healthcare resources to incorporate this condition into existing services.
As it stands in 2025, progress has been made across OECD countries in adopting the WHO definition as a consensus for diagnosis, using ICD‑10 coding in health systems, and improving the knowledge base through scientific advisory committees and dedicated research funding for long COVID. Nonetheless, there remain ongoing challenges for surveillance of cases, organisation of care and availability of treatment guidelines. Finally, recognition and support for patients outside the health system – especially for children with long COVID and patients with reduced work capacity – are lacking in 2025. Continued international collaboration to support the development of evidenced-based policies, clinical guidelines and care pathways at the national level will help to reduce the economic and social burden of long COVID both for individual patients and for OECD Member countries. Research from the United Kingdom found that flexibility at work is key for long COVID support, with recommendations including flexible working hours, working from home, and developing a supportive workplace culture (Kwon et al., 2024[2]).
Addressing these challenges requires a co‑ordinated policy response underpinned by robust prevention strategies, harmonised definitions and data, investment in people‑centred care, and continued recognition and support for those affected. Key policy recommendations informed by the mapping survey and evolving evidence base on long COVID include the following.
8.3.1. More efforts should be made to prevent long COVID through COVID‑19 vaccination and non-pharmaceutical interventions
Maintaining a strong focus on prevention is critical, as SARS‑CoV‑2 infection is the necessary precursor to long COVID, and remains preventable. This includes continued promotion of COVID‑19 vaccination for those at highest risk of severe COVD‑19 and of developing long COVID, early treatment of acute COVID‑19, and public health measures to reduce viral transmission. Evidence indicates that vaccination not only lowers the risk of infection but also reduces the likelihood of developing long COVID among those infected (Chapter 6, Box 6.2). However, policymakers need to consider likely population uptake and cost-effectiveness of their vaccination strategy in deciding whom to continue recommending COVID‑19 vaccination for, in the era of lower risk of COVID‑19. Surveillance systems should continue to monitor COVID‑19 transmission, given the limited current understanding of post-pandemic epidemiological patterns in OECD and EU Member countries. Notably, the impact of persistence of SARS‑CoV‑2 virus in individuals with long COVID, which may facilitate mutational processes.
8.3.2. Harmonising implementation of standard definitions and disease coding for long COVID would strengthen countries’ responses
As shown in Chapters 4‑7, differences in national approaches to defining and measuring long COVID impede understanding of the disease burden across countries, comparative research and policy analysis. OECD and EU Member countries should prioritise alignment on a standardised definition of long COVID such as the widely used WHO definition, although the definition may need to adapt over time with deepening knowledge of the condition. Furthermore, harmonisation of standard ICD disease coding for long COVID would enable aggregation, robust analysis and evidence‑based decision making.
In addition, most countries lack robust, usable data on long COVID, limiting the ability to estimate burdens accurately and develop effective policy interventions. Countries should prioritise collection and reporting of high-quality national data on long COVID to inform policy responses. Investment and alignment in national and cross-country monitoring (whether via surveys, administrative data analyses or surveillance registries) is needed to track prevalence, risk groups and intervention outcomes.
8.3.3. Health systems should expand people‑centred care pathways
Specialised care pathways, including innovative multidisciplinary models of care, can improve the timeliness and accuracy of diagnosis and effective management of long COVID for patients. This includes training – particularly for primary care professionals – to increase awareness and recognition of the condition. It also requires clinical guidelines, personalised care planning to optimise symptom management, and the repurposing of existing treatment options alongside ongoing research into condition-specific therapies. Researchers and clinicians must work collaboratively to deepen understanding of the condition, and of potential therapies and treatment approaches to improve outcomes and healthcare experiences of patients.
8.3.4. Recognition and support to patients remains a key pillar in addressing long COVID
Long COVID can severely disrupt employment and financial stability for individuals affected by mild and severe forms, while also disrupting education for children with the condition. Policymakers should facilitate access to sick leave and social benefits for long COVID patients who need it based on their functioning capacity, including disability benefits for those severely impaired in the long term, with transparent assessment processes. Employers should also be made aware of the challenges, and should make support available for workers with long COVID – including though workplace accommodations that can help individuals stay in the labour market. Education systems should also adapt and provide options that can support learning and development among children with long COVID.
8.3.5. Research funding should be maintained and the research agenda informed by patients
Few countries have cross-sectoral national programmes for long COVID; such initiatives are vital for supporting research and care development, and for addressing the broad health, social and economic needs of patients. Funding must continue to be mobilised at the national and regional levels, and needs to include co-creation and direct input from patient communities.
8.3.6. International collaboration in sharing health initiatives has great potential, which remains mostly untapped
Countries largely navigated the challenges of long COVID on their own until the EU long COVID project launched. Through this initiative, the need for sharing of evidence‑based policies, clinical guidelines, good practices, effective interventions and care organisation systems for long COVID has become even more evident. A continued mechanism to exchange knowledge and align on research priorities across OECD countries should be developed to support continued progress in managing long COVID.
Long COVID is one among a series of PAISs, which together pose a major burden on the health and well-being of people. Long COVID and other PAISs are not receding, yet there are worrying signs of decreased political and financial attention to the topic. Sustained momentum is necessary, as addressing these conditions benefits both immediate patient-centred agendas and long-term preparedness for future pandemic scenarios.
8.4.1. Long COVID is a striking reminder of the importance of the people‑centred agenda and the role that patient organisations can play
Long COVID provides a unique lens through which to examine how health systems can better embed people‑centredness into their core functioning. It is a striking reminder of why people‑centredness must remain a cornerstone of health systems.
Three interrelated features of long COVID make it a particularly compelling case for strengthening people‑centred health systems. First, since its emergence, the voices of patients have been instrumental in mobilising the scientific and policy community around this new condition (Box 8.1). Patients play a crucial role as partners in the health system – not only through self‑management and shared decision making in their own care, but also through advocacy and public engagement. A range of patient‑led initiatives have shaped research agendas, improved access to care and fostered recognition of long COVID across health systems – from the Patient‑Led Research Collaborative and Long COVID Europe to Long COVID Support, Long COVID Physio, and other grassroots organisations. Their collective action has helped secure funding, inform policy and co‑design tools to support those living with the condition. This demonstrates the power of lived experience in driving health-system responsiveness and reform.
The history of long COVID has been shaped to a great extent by patients themselves. In March 2020, as the COVID‑19 pandemic began to unfold globally, individuals with infection‑associated chronic conditions warned of the likely emergence of long‑term illness following SARS‑CoV‑2 infection. The first widely read personal account of non‑recovery from acute COVID‑19 appeared in the New York Times in April 2020, written by American journalist Fiona Lowenstein. Around the same time, patients began to self‑organise, coined the term “long COVID” and conducted the first known survey – later formally published – documenting the wide range of symptoms experienced by those affected.
Progress on long COVID in terms of awareness, research priorities, care practices and support benefits tremendously from national and cross-border organised patient advocacy efforts, such as the following:
Long COVID Alliance is a the United States-based coalition of patient, clinician and advocacy groups providing centralised tools and directories for long COVID patients (including a clinic locator, disability and insurance guides, and mental health resources). Its key impact is improving access to care and information through patient-led advocacy and curated support materials, with notable success in helping secure USD 1.15 billion in funding from the National Institutes of Health for long COVID research.
Patient‑Led Research Collaborative is an international team of people living with long COVID and related conditions who lead research, registry development and advocacy efforts. Their work includes a patient-designed registry, global surveys and policy engagement. Notable successes include publishing one of the first large‑scale international long COVID symptom-cohort studies (3 762 participants over seven months) and having their work cited by major organisations and guidelines.
Long COVID Europe is a pan-European network of national long COVID patient associations led by individuals with lived experience, dedicated to promoting awareness, co‑ordinating advocacy and advancing patient-centred research across Europe. A significant achievement includes leading a co‑ordinated call for a EUR 500 million EU emergency fund to support biomedical research and policy action on long COVID.
The COVID‑19 Longhauler Advocacy Project is a the United States-based non-profit organisation led by and for individuals living with long COVID, dedicated to advancing recognition, research, resources and equity in care for long COVID and infection-associated chronic conditions. Prominent successes include the development of a comprehensive educational guide on long COVID and active advocacy for broad adoption of the 2024 NASEM definition of long COVID, aligning clinical, research and policy frameworks.
Long COVID Support is a registered UK charity led by people with long COVID, providing national peer support, advocacy and evidence‑based resources to improve care and awareness. It is notable for establishing one of the largest global patient support networks, and for influencing UK health policy and service development.
Long COVID Physio is a global, patient-led association founded by physiotherapists living with long COVID, providing multilingual education, peer support and advocacy to improve rehabilitation practices. Its successes include influencing international physiotherapy guidelines, partnering with the Chartered Society of Physiotherapy, and reaching audiences in over 100 countries through its resources and podcast.
Source: New York Times (2020), https://www.nytimes.com/2020/04/13/opinion/coronavirus-recovery.html.
The second feature is that long COVID reveals the need for a patient‑centred approach to care design and service delivery – an area where systems have often struggled. Drawing on the OECD Framework for People‑Centred Health Systems (OECD, 2021[3]), the management of long COVID in OECD countries can be examined through five key dimensions.
Voice: Patients should have a formal role in governance and policy processes. While some countries such as Germany and the Netherlands have integrated patient representatives in decision making, many people with long COVID have had to create their own advocacy channels (Box 8.1).
Choice: Ensuring that people can access a range of providers without financial or logistical barriers remains essential. Although many OECD countries offer public coverage for long COVID‑related consultations and therapies, out‑of‑pocket costs and unmet demand often limit effective choice. Enhancing awareness and diagnostic capacity at the primary care level is critical to enable informed choice of care and timely referral.
Co‑production: Patients must be informed participants in their own care, yet many report misdiagnoses or ineffective guidance, such as advice leading to post‑exertional malaise. Greater effort is needed to provide reliable information, connect patients to social supports, and involve representatives in developing care pathways and educational resources.
Integration: Co‑ordinated and seamless care pathways supported by robust digital infrastructures are vital. Consistent coding, shared electronic records and clear referral protocols can foster continuity and improve transitions between levels of care. Access to a focal point of co‑ordination – such as a general practitioner or specialised clinic – is particularly important for effective management of long COVID.
Respectfulness: Every patient deserves to be heard and treated with dignity. Many people with long COVID have faced disbelief or stigma, highlighting persistent cultural and informational gaps. Broader recognition of the condition’s diverse manifestations is essential to rebuild trust and embed empathy in clinical practice.
Finally, long COVID underscores the need to continue improving how systems measure both the experience and the outcomes of care. Traditional performance metrics have focussed on longevity and biomedical outcomes, but recent policy developments have reinforced the importance of measuring how well people live – their quality of life, well‑being and functioning.
A people‑centred perspective puts individuals at the heart of health-system assessments that consider how effectively services respond to their needs and experiences across the entire care journey. Patient‑reported measures, such as those collected through the OECD PaRIS survey, provide a crucial lens to evaluate performance from the patient’s perspective. In the case of long COVID, PaRIS results indicate worse patient-reported outcomes and worse experiences of health among patients with the condition (Box 8.2).
Long COVID thus stands as both a test and an opportunity – urging systems to renew their commitment to person‑centredness and to translate the lessons of this condition into lasting improvements for all patients.
The WHO case definition of long COVID lists three of the most common symptoms specifically, of which fatigue is the first. Indeed, the OECD PaRIS survey found that long COVID patients have double the rates of severe fatigue of other primary care users (20% versus 10%). Concerningly, however, the PaRIS survey also revealed worse physical and mental health patient-reported outcomes for patients with long COVID. A significantly lower share of long COVID patients (75%) rated their mental health as “good” (compared to 81% among patients without long COVID). Similarly, for physical health, only 60% of long COVID patients rated their physical health as “good” compared to 70% of those without long COVID (Figure 8.1). On average, the reported physical health scores fell in the “fair” category as opposed to the “good” category more often for patients with long COVID than for those without the condition.
Source: OECD (2025[4]), “The prevalence and impact of Long COVID in the primary care population: Findings from the OECD PaRIS survey”, https://doi.org/10.1787/119b0e8f-en.
The OECD’s PaRIS survey results also showed that patients with long COVID report worse experiences with the health system: one‑third reported that they had to repeat information that should be in their medical records (compared to one‑quarter of patients without long COVID). This may be linked to a lack of awareness of long COVID among primary care physicians or a lack of consistent coding practices for long COVID (as identified in Section 4.4). In addition, fewer long COVID patients reported trust in the healthcare system (58%) than primary care users without long COVID (64%, Figure 8.1). Lower levels of trust may relate to past experiences with the health system, including lack of recognition and understanding of long COVID, delays in diagnosis, and poorly organised care systems and pathways for treatment of the condition.
8.4.2. Addressing long COVID contributes to fostering health-system resilience
The COVID‑19 pandemic exposed deep vulnerabilities in health systems, underscoring the urgent need to strengthen their resilience – not only the ability to absorb shocks but also the ability to adapt, recover and transform, while maintaining essential services across all areas of care (OECD, 2023[5]).
The unanticipated emergence of long COVID added new pressure at a moment when systems were still managing the acute COVID‑19 crisis. Responding to the complex, long‑term needs of affected patients placed additional strain on service capacity, workforce and co‑ordination, testing health systems’ ability to continue to meet people’s needs and expectations even under concurrent stress. This experience vividly illustrates the OECD concept of resilience as the capacity to anticipate, absorb and adapt to shocks without compromising core service delivery (OECD, 2023[5]).
Learning from the long COVID experience is therefore critical to strengthening preparedness for future pandemics. The COVID‑19 response revealed that long‑term consequences of infection were often neglected in the early stages, and risked being overlooked as the pandemic entered the post-acute recovery phase. In any future pandemic, or in the event of the emergence of a new or more virulent SARS‑CoV‑2 variant, attention to potential long‑term sequelae must be anticipated and integrated into planning from the start of the acute response.
Availability of accurate and timely surveillance data facilitates more informed health policymaking. Health systems should establish systematic follow‑up mechanisms for patients from the outset of any new infectious outbreak. This includes registry‑ or cohort‑based surveillance or surveys of infected populations across the spectrum of disease severity, tracking symptoms, functioning outcomes, employment status and overall well‑being compared with pre‑infection levels. Such longitudinal data are essential to detect new PAISs early and to guide effective prevention, rehabilitation and support policies.
Equally importantly, investments made in long COVID research – including advances in understanding the biological mechanisms of PAISs, in the development of diagnostic aids and effective treatment pathways, and in designing supportive care models – create a foundation for faster and more co‑ordinated responses to future health threats. Building on these lessons can help policymakers to avoid leaving new patient groups in prolonged uncertainty, and may reduce the time lag between clinical recognition and policy or research action in future crises.
Long COVID is a prime example that highlights the importance of integrated, multidisciplinary and sustained care models that link primary care, specialist services, rehabilitation and social support. These are precisely the attributes of resilient and agile health systems. By strengthening these capacities now, countries can enhance both their preparedness and their day‑to‑day ability to care for people with complex, long‑term conditions – included those that arise unexpectedly in the population.
Understanding and responding proactively to long COVID thus foster resilience in a tangible way. It would be inexcusable not to learn from this experience, using it to build stronger, more agile health systems for the future.
References
[1] Government of the Netherlands (2025), Response to the Committee’s request for a speedy submission of a progress letter for post-infectious diseases (including post-covid), Letter No. 2238, https://www.tweedekamer.nl/kamerstukken/brieven_regering/detail?id=2025Z20819&did=2025D49041 (accessed on 26 February 2026).
[2] Kwon, J. et al. (2024), “Impact of Long COVID on productivity and informal caregiving”, The European Journal of Health Economics, Vol. 25, pp. 1095–1115, https://doi.org/10.1007/s10198-023-01653-z.
[4] OECD (2025), “The prevalence and impact of Long COVID in the primary care population: Findings from the OECD PaRIS survey”, OECD Publishing, Paris, https://doi.org/10.1787/119b0e8f-en.
[5] OECD (2023), Ready for the Next Crisis? Investing in Health System Resilience, OECD Health Policy Studies, OECD Publishing, Paris, https://doi.org/10.1787/1e53cf80-en.
[3] OECD (2021), Health for the People, by the People: Building People-centred Health Systems, OECD Health Policy Studies, OECD Publishing, Paris, https://doi.org/10.1787/c259e79a-en.