This chapter summarises the various policy initiatives for long COVID in place across EU and OECD countries. It presents findings from 16 countries which responded to the OECD policy survey in 2025, outlining their initiatives to improve the recognition, diagnosis and management of long COVID at the clinical level and in the health and social care system. The summary provides an update on the progress and gaps in addressing long COVID as a novel health condition, including case definitions, diagnostic coding, surveillance and illness and disability benefits in place.
Addressing the Costs and Care for Long COVID
The Long Shadow of the Pandemic
Abstract
One of the challenges of long COVID is the non-specific and broad range of symptoms associated with the condition. These can include fatigue and post-exertional malaise; respiratory and cardiovascular symptoms such as shortness of breath and heart palpitations; and neurological and cognitive symptoms including dizziness, brain fog and memory impairment. The challenge is compounded by a lack of biomarkers or confirmatory diagnostic tests for long COVID, making the condition more complex to recognise and diagnose in healthcare systems. Its novel and non-specific nature have led to a varied recognition of long COVID as a medical diagnosis by healthcare professionals, professional medical associations and health and social welfare systems. As a result, differing diagnostic definitions also can lead to large differences among patients identified as having long COVID. For example, a 2025 study found that using five different definitions for long COVID yielded prevalence rates that varied by as much as 50% at six months following COVID‑19 infection (Santé publique France, 2024[1]).
There must be agreement on a standard definition of long COVID within each country in order to identify patients with the condition, assess the disease burden and develop the appropriate care pathways for patients. Several definitions have been commonly used by countries, with the goal of ensuring that patients with long COVID are included while avoiding inclusion of patients whose condition is not related to a previous SARS‑CoV‑2 infection. One key definition comes from WHO, which defines long COVID as the continuation or development of new symptoms within three months of a confirmed or suspected SARS‑CoV‑2 infection, with these symptoms lasting for at least two months with no other explanation (WHO, 2022[2]).
Another similar definition from the United Kingdom’s National Institute for Health and Care Excellence (NICE) is based on symptoms persisting for more than 12 weeks that are not explained by an alternative diagnosis (NICE, 2024[3]). In the United States, the National Academies of Sciences, Engineering, and Medicine (NASEM) definition requires symptoms or manifestations to persist for at least three months after SARS‑CoV‑2 infection, and includes a list of potential symptoms and diagnosable conditions as well as important relevant features (NASEM, 2024[4]) (see Box 4.1 on the United States response to long COVID). In describing the process of developing its definition, NASEM noted that it uses the terminology “long COVID” versus other options such as post-acute sequalae of COVID‑19 for simplicity; it has defined long COVID as existing among a larger group of infection-associated chronic conditions; and it uses the term “disease state” to highlight the extent of severity and clinical impact of the condition (Ely, Brown and Fineberg, 2024[5]). NASEM also reiterated that as more scientific research is undertaken and knowledge develops, the definition may be adapted.
Of the 16 countries responding to the survey, 10 reported using the WHO definition of long COVID as standard practice by healthcare workers (Figure 4.1). Belgium uses the NICE and US Centers for Disease Control and Prevention (CDC) definitions in research, alongside its own definition used in national guidelines, which is based on symptoms persisting for more than four weeks after acute COVID‑19 illness. Germany also uses the NICE definition in conjunction with the WHO definition. Five countries (Austria, Czechia, the Netherlands, Poland and Sweden) reported not having a standardised definition in use. Japan reported their Ministry of Health, Labour and Welfare adopted the WHO definition for long COVID.
In the 2024 report Mapping long COVID across the EU: definitions, guidelines and surveillance systems in EU Member States, a literature review yielded multiple different definitions of long COVID from national ministry and health authority websites that commonly aligned with WHO or NICE definitions. The results of the 2025 OECD survey thus indicate an evolution over time, whereby the majority of countries now officially align with the WHO definition. In the Netherlands, Poland and Sweden, where no official long COVID definition has been set, the WHO definition is reported to be widely used in practice.
Note: Survey question: “Does your country currently use a standardised definition of long COVID?” In addition to its own national definition, Belgium uses the NICE and US CDC definitions for research and to guide care trajectories.
Source: 2025 OECD Long COVID Mapping Policy Survey.
Long COVID affects children and adolescents as well as adults, although the exact prevalence is unknown. The WHO paediatric definition differs from the adult version in emphasising fatigue, altered smell and anxiety as three common symptoms, among others; it also highlights the impact on home, school and social life (WHO, 2023[6]). Recognition of paediatric long COVID is critical for children and adolescents suffering from the condition to receive an appropriate diagnosis and access services, as the impact on their current and long-term well-being, as well as on their families, can be profound.
Seven countries (Australia, Austria, Canada, France, Germany, the Netherlands and Sweden) declared recognition of paediatric long COVID either in their national plans or in the form of specific paediatric recommendations or care clinics (Figure 4.2). The Netherlands (UMC Utrecht, 2025[7]) and Sweden inaugurated paediatric clinics that combine actions on long COVID care, research and education. In Sweden, two outpatient clinics specialise in paediatric long COVID; in the Netherlands two post-COVID centres specialise in treatment of children. In Sweden, clinicians are informed about the impact of long COVID on children, with guidelines for rehabilitation including healthcare and special needs co‑ordinators. In the United States, research on paediatric long COVID is part of the RECOVERY initiative (Box 4.1).
Note: Survey question: “Is there specific recognition/awareness of paediatric long COVID in your country?”
Source: 2025 OECD Long COVID Mapping Policy Survey.
In Germany, the Federal Ministry of Health is funding a programme for 2024-2028 under which a care network has been set up for young people affected by long COVID and diseases with similar clinical presentation, in order to provide care services that adequately cover the diverse symptoms of long COVID. Canada is generating paediatric insights from its Canadian Paediatric Surveillance Program, which launched a national study on the post COVID‑19 condition in children between September 2022 and August 2024 to characterise cases of long COVID in children (Canadian Paediatric Society, 2024[8]).
No country reported recognising paediatric acute‑onset neuropsychiatric syndrome, which has been a major area of concern for child patients’ associations (Long COVID Kids, 2022[9]). This disease consists of brain inflammation following an infection (such as COVID‑19, potentially) and can trigger a wide range of physical and mental health symptoms. Overall, in 2025, several initiatives have been created to advance paediatric research and support children affected by long COVID, but paediatric recognition is still lacking in the majority of countries.
Regardless of their national definition, countries have various ways of recording whether a patient has symptoms of long COVID for clinical and medico‑administrative purposes. This diagnostic coding is important for ensuring that patient encounters with the health system are recorded and made available for decision making by healthcare providers, and for provision of diagnostic and treatment services. Appropriate coding of long COVID can also help in assessing disease burden and providing insights into the care patterns, treatment and outcomes of patients at a population level. In addition, it formalises recognition of that condition by the health system and its actors.
Eleven countries reported using the International Classification of Disease, tenth revision (ICD‑10) coding for long COVID, with the code U09.9 (“Post COVID-19 condition”) the most common classification used (Figure 4.3). This diagnostic code is also used by countries including Poland that have not adopted a national definition for long COVID as described above. Four countries (Belgium, France, Norway and Slovenia) reported not having specific diagnostic coding in place for the condition. France noted that coding for long COVID is complex, as most patients are cared for via outpatient consultations where disease coding is rarely performed, although patients treated in primary care may be given a code on a voluntary basis. In the past, ICD‑10 code U10.9 (“Multisystem inflammatory syndrome associated with COVID-19”) has also been used in France. In the Netherlands, the International Classification of Primary Care code R83‑04 is used, while coding for the condition does not take place in secondary or tertiary care. In Australia, in addition to ICD‑10 codes, several codes in the health system designate outpatient consultations by patients with long COVID, depending both on whether the consultations were conducted by physicians or allied health professionals and on the care setting (IHACPA, 2025[10]).
Notes: Survey question: “Does your country use a specific coding and classification for long COVID?”
Source: 2025 OECD Long COVID Mapping Policy Survey.
Regardless of what coding systems exist in a country, many patients may not in practice receive the diagnostic code for long COVID in their medical records. This is evidenced by surveillance data on long COVID based on disease coding, which have been shown to underestimate the number of cases considerably (communicated by national health agencies in Finland and Sweden). To be effective for both patient care and system-level surveillance, long COVID coding requires several key components beyond the existence of dedicated codes. These include awareness and clinical competency among healthcare workers to recognise and diagnose long COVID, functional national health data infrastructure, knowledge of the existence of dedicated diagnostic codes, and proficiency for health data recording.
Patients and healthcare workers have often reported difficulties in obtaining and making a formal diagnosis of long COVID in their country. Other diagnoses associated with – or occurring as a consequence of – the condition can be easier to confer from a diagnostic coding and medico‑administrative perspective in some countries. This may in part account for the currently under-reported disease burden of long COVID. Alternative diagnostic coding can help patients living with long COVID access the health and social welfare services they need for their condition, albeit via a different route. However, alternative coding also contributes to underestimating the disease burden, and to a lack of awareness and recognition of the impact of long COVID on patients and society.
The main alternative diagnosis to formal long COVID diagnosis is myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) (reported by 11 countries), followed by depressive disorder (reported by nine countries) and dysautonomia (reported by seven countries). Diabetes or heart disease were noted as alternative diagnoses by 4‑5 countries each. Austria reported that ICD‑10 coding for long COVID and ME/CFS are often used to code for post-acute infection syndrome (PAIS) in patients – sometimes interchangeably throughout a patient’s care journey.
To report long COVID, the ICD‑10 Clinical Modification Guideline on Post COVID‑19 Condition instructs that alongside the code U09.9 (“Post COVID-19 condition”, unspecified), one or more codes should be used to indicate related specific symptoms or conditions (WHO, 2022[11]). This dual coding practice was reported by three countries (Canada, Germany and Poland). The eleventh revision of the ICD provides a specific code for long COVID – RA02 (Post COVID‑19 condition) – which serves as a link between symptoms or conditions that are listed and the COVID‑19 aetiology (WHO, 2022[12]).
In order to plan and fund programmes, initiatives and support for long COVID, countries must more accurately estimate and monitor the disease burden. Clinical definitions and coding methods are key processes helping countries in their surveillance efforts to quantify long COVID cases and provide reliable estimates of the health impact. As most countries lack reliable means of surveillance of the disease burden, many OECD countries resort to various methods to obtain recent estimates of long COVID case numbers. Many are reliant on medico‑administrative or research data, which may underestimate or lack representativeness for the disease burden in the general population. These methods are also subject to issues related to awareness, appropriate diagnosis and coding, as described in Section 4.4.
Only one countries (Czechia) reported a dedicated surveillance database for reporting cases of long COVID in 2025 (Figure 4.4). The country aims to achieve full population coverage by linking this registry to the country’s post-COVID expertise centres. France is considering implementing a self-reported case registry. In Poland, a patient registry is under construction as part of a project at the Medical Research Agency, but no national routine surveillance system is in place.
Ten countries (Australia, Austria, Belgium, Czechia, Finland, Germany, Luxembourg, the Netherlands, Poland and Sweden) use their administrative databases as data sources to estimate long COVID cases. However, in Sweden, for example, since the data come from hospitals and do not capture primary care codes, the majority of patients with long COVID are not counted. Similarly, in Belgium, only patients who are included in the specific care pathway for long COVID can be identified. The Netherlands used GP administrative data for estimating long COVID prevalence on a once‑off basis, and identified barriers to registering long COVID patients (Simanowski et al., 2025[13]). Austria has an administrative database based on the ICD‑10 code U09.9 (“Post COVID-19 condition”), but it is not considered a reliable estimate of the number of long COVID cases.
Nine countries (Australia, Belgium, Canada, Finland, France, Germany, the Netherlands, Norway and Slovenia) estimate long COVID case numbers through surveys and research studies. In France, the most recent national study is from 2022 (Santé publique France, 2024[1]), while Canada has conducted annual surveys between 2022 and 2026, to monitor the prevalence, severity, duration and impact of the condition (Government of Canada, 2023[14]; Government of Canada, 2026[15]). In the Netherlands, tracking of the health status of patients with long COVID is possible via the Post-COVID Network, which is a research cohort of approximately 16 000 patients registered as of 2025 (ZonMw Netherlands, n.d.[16]). Three countries (Austria, Korea and Switzerland) reported not having an existing way to estimate long COVID cases. The US CDC has reported regular estimates of long COVID prevalence using periodic household surveys, as a means of surveillance of long COVID in the population (Box 4.1). Additionally, Ireland conducted the FADA population survey to estimate the prevalence and health impact of long COVID in 2022 (Health Service Executive;, 2024[17]). Japan established two research cohorts of patients follow-up since 2021 and 2022 to survey for long COVID.
Note: Survey question: “Is there a dedicated registry or database that enables surveillance of cases of long COVID in your country? (Select all that apply)”.
Source: 2025 OECD Long COVID Mapping Policy Survey.
The United States has been a leader in the response to long COVID, engaging multiple agencies to understand, monitor and address the condition. The Health and Human Services Office for Long COVID Research and Practice was created in 2023, on recommendation of the National Research Action Plan on Long COVID report, to co‑ordinate efforts across 14 federal agencies (Federal Register, 2023[18]).
In addressing long COVID, the US Department of Health and Human Services recognised the need for a robust definition to support clinical care, research and supportive services. It thus tasked NASEM to develop a long COVID definition through a rigorous, inclusive and multidisciplinary process (NASEM, 2024[4]). A 16‑member committee conducted an extensive literature review, and involved over 1 300 stakeholders in this process (Abene, 2024[19]; Solve M.E., 2024[20]). NASEM uses the terminology “long COVID” for simplicity and comprehensibility. It chose to define long COVID as existing among a larger group of infection-associated chronic conditions to highlight the extent of severity and the clinical impact of the condition (Ely, Brown and Fineberg, 2024[5]).
The US CDC tracks long COVID prevalence through the household pulse surveys, with an updated estimate expected in 2026. Its estimates, based on survey data and information from electronic health records, facilitate segmenting of prevalence data by state and demographic groups, with results available through an interactive dashboard on its website (CDC, 2025[21]). The CDC has also provided a broad suite of resources for healthcare professionals, with an emphasis on building awareness and understanding of the condition, and on information to support healthcare decision making and disability claims (CDC, 2025[22]). Importantly, the CDC has taken an active role in promoting COVID‑19 vaccination as a key prevention measure for long COVID.
The US National Institute of Health’s 2021 Researching COVID‑19 to Enhance Recovery (RECOVER) programme had initial funding of USD 1.15 billion, including over USD 764 million for clinical research studies and USD 173 million for clinical trials (RECOVER, 2025[23]). An additional USD 662 million was allocated to fund research studies from 2025 to 2029. RECOVER cohort studies have included nearly 90 000 participants, with trials aiming to understand the underlying causes and health impact of long COVID, as well as identifying and testing therapeutic interventions (NIH, 2024[24]). Paediatric long COVID has been a priority for research: as part of the RECOVER programme, more than 15 000 children are participating in observational studies and clinical trials at more than 100 sites (RECOVER, 2025[25]; VCU Health, 2024[26]).
Long COVID has benefited from disability recognition in the United States, with government guidance confirming that it may qualify as a disability for government services if the condition substantially limits a major life activity (US Department of Health and Human Services; US Department of Justice, 2021[27]). Similarly, employers must provide reasonable accommodations for employees with the condition, including modified work schedules, leave or remote work options; employees are protected from discrimination or retaliation based on this disability status.
Nonetheless, the longer-term trajectory in the United States around long COVID is not clear. While previously the US Food and Drug Administration recommended COVID‑19 vaccines for anyone older than six months, the 2025 vaccine schedule was adjusted to support individual-based decision making (CDC, 2025[28]; AAMC, 2025[29]). Similarly, the Office for Long COVID Research and Practice is closing, and some grants under the RECOVER programme have been cancelled (Venkatesan, 2025[30]).
As shown in the first part of the report that provides an estimate of the socio‑economic consequences of long COVID, patients with the condition incur additional healthcare costs. Direct medical costs can vary considerably owing to the care needs of patients – including diagnostic services; consultations; physical, occupational or speech therapy; and medications – as well as severity of the condition.
All countries responding to the 2025 policy survey have some coverage of healthcare costs for various services required by long COVID patients. However, coverage is usually not specific to long COVID, and the extent of protection varies. Austria noted that many patients affected by this condition often need more specialised care, and that visits to private healthcare institutions are not fully covered by public insurance. In the Netherlands, patients with long COVID needing physiotherapy must often rely on additional insurance coverage. In addition, while the Netherlands has multiple post-COVID centres of expertise where the costs for patient treatment are covered as part of ongoing research, there are waiting lists to access these centres. Based on the research findings, some of these services may be included in the health insurance package in the Netherlands in the future, which will increase access.
Most countries responding to the 2025 policy survey noted that sick leave or disability benefits are generally not granted based on specific recognition or diagnosis of long COVID but rather based on general eligibility criteria for social welfare. For example, sick leave and disability allowances are based on a person’s ability to work rather than the underlying illness in Austria; similarly, in Australia, the National Disability Insurance Scheme is based on having any significant disability. In Finland, sick leave and social welfare support are decided on an individual basis owing to the varied nature and symptoms of long COVID. In France, the list of long-term conditions that provide 100% coverage does not explicitly include long COVID. However, the national health insurance fund can grant 100% coverage for complex and costly non-listed conditions, based on justification from the primary care and specialist practitioners. Regardless, patients in France can still benefit from sick leave of six months with support for transportation. In Poland, both the diagnosis and health status are considered when determining eligibility for social welfare benefits.
Nevertheless, four countries (Belgium, Germany, Luxembourg and Switzerland) reported specifically funding sick leave for long COVID as a recognised illness. In Luxembourg, this initiative required dialogue and strong collaboration between healthcare providers, patients, Ministry of Health and Social Security, the Health Insurance Fund. In Germany, long COVID symptoms can be recognised as a disability, with some cases even recognised as an occupational illness (BMG Initiative Long COVID, n.d.[31]) Furthermore, Switzerland reported that long COVID is formally recognised for disability benefits.
Most OECD countries surveyed in 2025 did not directly recognise a diagnosis of long COVID in the provisions of their social welfare systems but rather make decisions on support based on the impact on the patient’s functioning capacity. In some cases, this is in line with the country’s approach to social welfare eligibility, which does not base disability on a list of diagnosed conditions (such as Australia and Austria). In other cases such as in France, there is a list of conditions that automatically grant disability coverage (of which long COVID is not among them), but disability support can also be granted for other situations that cause significant impairment. Similarly, Sweden and the Netherlands reported that social security benefits for people living with long COVID are based on the impact on patients functioning capacity, rather than specifically linked to a diagnosis of long COVID.
With the support of the Ministry of Social Affairs and Employment in the Netherlands, guidelines are in development to improve occupational physicians’ knowledge of long COVID symptoms and limitations to assist in a thorough disability assessment for patients with the condition applying for disability benefits. Similarly, the Dutch Employee Insurance Agency has organised training courses on long COVID for occupational physicians (Uitvoeringsinstituut Werknemersverzekeringen, 2025[32]). Given that long COVID affects individuals differently, their social welfare needs may also vary, and available support should be assessed accordingly – particularly those who are highly impaired over the long term – to ensure they receive the recognition and financial support they need from social welfare systems.
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