Category: Economics

The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia

Abstract:

Objective Estimate costs of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to patients, government, and Australian society.

Methods Australian ME/CFS patients and their carers were recruited using convenience sampling. Patients completed an online retrospective cost diary, providing ME/CFS-related direct medical, non-medical and indirect costs. Informal care costs were collected directly from carers. Data from the Pharmaceutical Benefits Scheme and Medicare Benefits Schedule were linked to participant survey data. Annual per/patient and total societal costs were estimated, and broken down by category, and presented in 2021AUD. Factors associated with higher costs were investigated using generalized linear models.

Results 175 patients (mean/SD age of 49/14 years, 79.4% female) completed the cost diary. Estimated total annual societal costs of ME/CFS in Australia ranged between $1.38 and $10.09billion, with average annual total costs of $63,400/patient. Three-quarters of these costs were due to indirect costs ($46,731). Disability severity was the key factor associated with higher costs, particularly for indirect costs (being 2.27-fold higher for severe disability than no/mild disability).

Conclusions ME/CFS poses a significant economic burden in Australia, owing mainly to high indirect and informal care costs.

Source: Ting Zhao, Ingrid Cox, Hasnat Ahmed, Julie Campbell, Martin Hensher, Andrew Palmer, Ryan Kelly, Melissa Rogerson, Karen Wills, Barbara de Graaff. The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia. Australian Health Review. AH23106 Accepted 07 November 2023 https://www.publish.csiro.au/AH/justaccepted/AH23106

The COVID-19 Pandemic and the $16 Trillion Virus

The SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) pandemic is the greatest threat to prosperity and well-being the US has encountered since the Great Depression. This Viewpoint aggregates mortality, morbidity, mental health conditions, and direct economic losses to estimate the total cost of the pandemic in the US on the optimistic assumption that it will be substantially contained by the fall of 2021. These costs far exceed those associated with conventional recessions and the Iraq War, and are similar to those associated with global climate change. However, increased investment in testing and contact tracing could have economic benefits that are at least 30 times greater than the estimated costs of the investment in these approaches.

Read the full text here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604733/

Also see: The Economic Cost of Long COVID: An Update: https://scholar.harvard.edu/files/cutler/files/long_covid_update_7-22.pdf

Source: Cutler DM, Summers LH. The COVID-19 Pandemic and the $16 Trillion Virus. JAMA. 2020;324(15):1495–1496. doi:10.1001/jama.2020.19759. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7604733/ (Full text)

The Economic Cost of Long COVID: An Update

Relative to my earlier estimate with Lawrence Summers of the cost of long COVID of $2.6 trillion, the higher number here is higher: $3.7 trillion in total. The higher estimate is largely a result of the greater prevalence of long COVID than we had guessed at the time. There are about 10 times the number of people with long COVID as have died of COVID. Because long COVID is so new, there is uncertainty about all of the numbers involved in the calculations. Still, the costs here are conservative, based on only cases to date. The enormity of these costs implies that policy to address long COVID are urgently needed. With costs this high, virtually any amount spent on long COVID detection, treatment, and control would result in benefits far above what it costs.

Read the full text here: https://scholar.harvard.edu/files/cutler/files/long_covid_update_7-22.pdf

Note: See The COVID-19 Pandemic and the $16 Trillion Virus for background.

Source: David M. Cutler. The Economic Cost of Long COVID: An Update. Harvard University.

Risk factors, health outcomes, healthcare services utilization, and direct medical costs of long COVID patient

Abstract:

Background: Data on the economic burden of long-COVID are scarce. We aimed to examine the prevalence and medical-costs for treating long-COVID.

Methods: We conducted this historical-cohort study using data of patients with COVID-19 among members of a large health-provider in Israel. Cases were defined according to physician diagnosis (definite long-COVID) or suggestive symptoms given ≥4-weeks from infection (probable cases). Healthcare resource utilization (HCRU) and direct healthcare costs (HCCs) in the period prior to infection and afterwards were compared across study groups.

Findings: Between March 2020, and March 2021, a total of 180,759 COVID-19 patients (mean[SD] age=32.9y [19.0y]; 89,665 [49.6%] females) were identified. Overall, 14,088(7.8%) individuals developed long-COVID (mean[SD] age=40.0y [19.0y]; 52.4% females). Among them, 1,477(10.5%) were definite long-COVID and 12,611(89.5%) were defined as probable long-COVID. Long-COVID was associated with age (AOR=1.058 per year, 95%CI:1.053-1.063), female sex (AOR=1.138;1.098-1.180), smoking (AOR=1.532;1.358-1.727), and symptomatic acute-phase (AOR=1.178;1.133-1.224), primarily muscle-pain and cough. Hypertension was an important risk factor for long-COVID among younger adults. Compared to non-long-COVID patients, definite and probable cases were associated with AORs of 2.47(2.22-2.75) and 1.76(1.68-1.84) for post-COVID hospitalization, respectively. While among non-long COVID patients HCCs decreased from US$ 1400 during 4 months before the infection to US$ 1021, among long-COVID patients HCC increased from $US 2435 to $US 2810.

Interpretation: Long-COVID is associated with a substantial increase in healthcare services utilization and direct-medical costs. Our findings underline the need for timely planning and allocating resources for long-COVID patient-centered care as well as for its secondary-prevention in high-risk patients.

Source: Tene L, Bergroth T, Eisenberg A, Ben David SS, Chodick G. Risk factors, health outcomes, healthcare services utilization, and direct medical costs of long COVID patient. Int J Infect Dis. 2022 Dec 15:S1201-9712(22)00640-3. doi: 10.1016/j.ijid.2022.12.002. Epub ahead of print. PMID: 36529373. https://www.ijidonline.com/article/S1201-9712(22)00640-3/fulltext (Full text)

Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS

Dear Editor,

The recent publication of a new NICE Guideline1 , an All-Party Parliamentary Group Report (APPG)2, and new Research Priorities3 heralds a dramatic shift in approaches and attitudes to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) in the UK. Largely ignored in all three publications, however, are unpaid carers (known outside the UK as family carers or caregivers). The vast majority of people with ME/CFS rely on their families for care and many of those families have been the driving force behind the changes to research and treatment
that are now unfolding.

There has been limited research on unpaid care in the specific context of ME/CFS, but the few existing studies clearly show that the usual toll of caring for a sick or disabled family member is compounded by the historic prejudice surrounding ME/CFS and the absence of evidence-based treatments.g.4-7.

While we applaud the commitment of NICE, the APPG, and the Priority Setting Partnership, it may still be decades before biomedical breakthroughs are made or translated into effective, widely available treatments for ME/CFS8. In the meantime, families will continue to provide the majority of
care for people with ME/CFS and bear the physical, psychological, and economic scars of doing so.

The new NICE guideline does recommend support for carers, but the supports it recommends are generic. They will do little to address the unique needs of ME/CFS carers or their systemic mistreatment by health and social care professionals. A change in the UK’s approach to ME/CFS is long overdue, but without a focus on unpaid carers the puzzle will always be missing a piece. The wellbeing of carers must also be a priority in ME/CFS
research and effective strategies must be developed to address their needs, and recognise and respect their expertise, in clinical practice and social care.

Kind regards,

Dr Siobhan O’Dwyer, University of Exeter Medical School
Ms Sarah Boothby, Former Carer
Dr Georgia Smith, University of Exeter Medical School
Dr Lucy Biddle, Bristol Medical School
Dr Nina Muirhead, Buckinghamshire NHS Trust
Dr Sharmila Khot, Cardiff and Vale University Health Board

Source: O’Dwyer S, Boothby S, Smith G, Biddle L, Muirhead N, Khot S. Unpaid carers are the missing piece in treatment guidelines and research priorities for ME/CFS. BMJ. 2022 Jul 14;378:o1691. doi: 10.1136/bmj.o1691. PMID: 35835467.  https://ore.exeter.ac.uk/repository/bitstream/handle/10871/130699/BMJ_Letter_ODwyer.pdf?sequence=3 (Text available as PDF file)

Austerity and identity formation: How welfare cutbacks condition narratives of sickness

Abstract:

In recent years, Swedish sick insurance has become more restrictive. In this article, we analyse how people not being granted payments, despite being seriously ill, are affected. Scholarship on identity formation and sickness stress the importance of constructing narratives in order to come to terms with one’s situation. Our analysis of 30 qualitative interviews with people diagnosed with ME/CFS shows that workfare politics conditions such identity formation and often prevents it from taking place.

Interviewees describe extreme stress as a result of their contacts with the Social Insurance Agency (SIA), which results in a perpetual crisis that is renewed with each new denied application. In particular, the sense of not having a future means that it is hard to construct narratives to make sense of one’s situation. To escape the perpetual crisis, some people have politicised their situation, constructing a narrative about themselves as suffering from oppressive politics. Others have escaped by not applying for sick insurance or other social insurances. But generally speaking, the most common effect of being denied sick insurance is an ongoing crisis that leads to deteriorating health.

Source: Altermark N, Plesner Å. Austerity and identity formation: How welfare cutbacks condition narratives of sickness. Sociol Health Illn. 2022 Sep;44(8):1270-1286. doi: 10.1111/1467-9566.13545. Epub 2022 Sep 6. PMID: 36066495. https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13545 (Full text)

A preliminary estimate of the economic impact of long COVID in the United States

Abstract:

Post-Acute Sequelae of SARS CoV-2 infection (PASC), more commonly referred to as Long COVID, is one of the most daunting health-care grand challenges facing the United States today. Affecting millions of Americans, Long COVID extracts a huge cost both socially and economically. In this article, we provide a preliminary estimate of the annual income loss and medical costs due to Long COVID in the United States. With many Long COVID patients either meeting the diagnostic criteria for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) or exhibiting symptoms consistent with ME/CFS, we utilize ME/CFS to help guide our estimates. Based on the nearly 86 million documented US COVID survivors as of June 25, 2022, and considering a range of 5% to 20% of those survivors currently afflicted with Long COVID, we estimate annual medical costs to range from $43 billion to $172 billion, and lost income to range from $101 billion to $430 billion. This corresponds to an annual economic impact (exclusive of costs of disability services, social services, and lost income on the part of caretakers) ranging from roughly $140 billion to $600 billion.

Source: Arthur A. Mirin (2022) A preliminary estimate of the economic impact of long COVID in the United States, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2022.2124064

A model framework for projecting the prevalence and impact of Long-COVID in the UK

Abstract:

The objective of this paper is to model lost Quality Adjusted Life Years (QALYs) from symptoms arising from COVID-19 disease in the UK population, including symptoms of ‘long-COVID’. The scope includes QALYs lost to symptoms, but not deaths, due to acute COVID-19 and long-COVID. The prevalence of symptomatic COVID-19, encompassing acute symptoms and long-COVID symptoms, was modelled using a decay function. Permanent injury as a result of COVID-19 infection, was modelled as a fixed prevalence. Both parts were combined to calculate QALY loss due to COVID-19 symptoms. Assuming a 60% final attack rate for SARS-CoV-2 infection in the population, we modelled 299,730 QALYs lost within 1 year of infection (90% due to symptomatic COVID-19 and 10% permanent injury) and 557,764 QALYs lost within 10 years of infection (49% due to symptomatic COVID-19 and 51% due to permanent injury). The UK Government willingness-to-pay to avoid these QALY losses would be £17.9 billion and £32.2 billion, respectively.

Additionally, 90,143 people were subject to permanent injury from COVID-19 (0.14% of the population). Given the ongoing development in information in this area, we present a model framework for calculating the health economic impacts of symptoms following SARS-CoV-2 infection. This model framework can aid in quantifying the adverse health impact of COVID-19, long-COVID and permanent injury following COVID-19 in society and assist the proactive management of risk posed to health. Further research is needed using standardised measures of patient reported outcomes relevant to long-COVID and applied at a population level.

Source: Martin C, Luteijn M, Letton W, Robertson J, McDonald S. A model framework for projecting the prevalence and impact of Long-COVID in the UK. PLoS One. 2021 Dec 2;16(12):e0260843. doi: 10.1371/journal.pone.0260843. PMID: 34855874; PMCID: PMC8639065. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8639065/ (Full text)

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine diagnostic tests and biomarkers are unavailable. There is no evidence on the economic impact of ME/CFS in Ireland.

Methods: Adopting a patient and public involvement approach, we undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland, including how and why they arise. Focus groups were audio-recorded and transcribed verbatim, and we employed thematic analysis following the approach set out in Braun and Clarke (2006).

Results: Themes from the data were: (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs. Patient participants described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments. These were linked to poor prognosis of the illness by participants who, as a result, faced a range of indirect costs, including poorer labour market and education outcomes, and lower economic well-being. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. Informal carer participants described a range of impacts, including time costs, burnout, and impacts on work and study.

Conclusions: The data suggests that ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal carers. These results will inform ongoing research that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness amongst healthcare providers and policymakers.

Source: Cullinan J, Ní Chomhraí O, Kindlon T, Black L, Casey B. Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study. HRB Open Res. 2020 Dec 4;3:88. doi: 10.12688/hrbopenres.13181.1. PMID: 33659857; PMCID: PMC7898356. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7898356/ (Full text)

Cost-effectiveness of Interventions for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis: A Systematic Review of Economic Evaluations

Abstract:

Introduction: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has profound quality of life and economic consequences for individuals, their family, formal services and wider society. Little is known about which therapeutic interventions are more cost-effective.

Objective: A systematic review was carried out to identify and critically appraise the evidence on the cost-effectiveness of CFS/ME interventions.

Methods: The review protocol was prespecified (PROSPERO: CRD42018118731). Searches were carried out across two databases-MEDLINE (1946-2020) and EMBASE (1974-2020). Additional studies were identified by searching reference lists. Only peer-reviewed journal articles of full economic evaluations examining CFS/ME interventions were included. Trial- and/or model-based economic evaluations were eligible. Data extraction and screening were carried out independently by two reviewers. The methodological quality of the economic evaluation and trial were assessed using the Consensus Health Economic Criteria checklist (CHEC-list) and Risk of Bias-2 (RoB-2) tool, respectively. A narrative synthesis was used to summarise the economic evidence for interventions for adults and children in primary and secondary care settings.

Results: Ten economic evaluations, all based on data derived from randomised controlled trials, met our eligibility criteria. Cognitive behavioural therapy (CBT) was evaluated across five studies, making it the most commonly evaluated intervention. There was evidence from three trials to support CBT as a cost-effective treatment option for adults; however, findings on CBT were not uniform, suggesting that cost-effectiveness may be context-specific. A wide array of other interventions were evaluated in adults, including limited evidence from two trials supporting the cost effectiveness of graded exercise therapy (GET). Just one study assessed intervention options for children. Our review highlighted the importance of informal care costs and productivity losses in the evaluation of CFS/ME interventions.

Conclusions: We identified a limited patchwork of evidence on the cost-effectiveness of interventions for CFS/ME. Evidence supports CBT as a cost-effective treatment option for adults; however, cost-effectiveness may depend on the duration and frequency of sessions. Limited evidence supports the cost effectiveness of GET. Key weaknesses in the literature included small sample sizes and short duration of follow-up. Further research is needed on pharmacological interventions and therapies for children.

Source: Cochrane M, Mitchell E, Hollingworth W, Crawley E, Trépel D. Cost-effectiveness of Interventions for Chronic Fatigue Syndrome or Myalgic Encephalomyelitis: A Systematic Review of Economic Evaluations. Appl Health Econ Health Policy. 2021 Mar 1:1–14. doi: 10.1007/s40258-021-00635-7. Epub ahead of print. PMID: 33646528; PMCID: PMC7917957. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7917957/ (Full text)