Economic Impact of CFS (Excerpts)

Source: Dynamic Medicine Vol. 7, #6 Date: April 8, 2008

URL: http://www.dynamic-med.com/content/7/1/6

The Economic impact of ME/CFS: Individual and societal costs

Leonard A. Jason(1,*), Mary C. Benton(2), Lisa Valentine(3), Abra Johnson(1), Susan Torres-Harding(4)

1 Department of Psychology, Depaul University, Center for Community Research, Chicago, IL, USA

2 Department of Psychology, Wichita State University, Wichita, KS, USA

3 Department of Psychology, University of North Texas, Denton, TX, USA

4 Department of Psychology, Roosevelt University, Chicago, IL, USA

Email addresses: LAJ: ljason@depaul.edu ; MCB: mcbenton@wichita.edu ; LV: lvalentine@unt.edu ; AJ: ajohns25@depaul.edu ; STH: storresharding@roosevelt.edu

 * Corresponding author: Leonard A. Jason, Ph.D., Center for Community Research, DePaul University, 990 W. Fullerton Ave., Suite 3100, Chicago, Il. 60614 (email: Ljason@depaul.edu ).

Abstract

Background

ME/CFS is characterized by debilitating fatigue in addition to other physical and cognitive symptoms. It is estimated to affect over 800,000 adults in the U.S. ME/CFS often results in diminished functionality and increased economic impact. The economic impact of an illness is generally divided into two categories: direct and indirect costs. Despite high prevalence rates and the disabling nature of the illness, few studies have examined the costs of ME/CFS at the individual and societal level. In fact, of the four studies examining the economic impact of ME/ME/CFS only two used a U. S. sample.

The current study used community and tertiary samples to examine the direct costs of ME/CFS. Results For Study 1, the annual direct total cost per ME/CFS patient was estimated to be $2,342, with the total annual direct cost of ME/CFS to society being approximately $2 billion. In Study 2, the annual direct was estimated to be $8,675 per ME/CFS patient, with the total annual direct cost of ME/CFS to society being approximately $7 billion..

Conclusions

Using ME/CFS prevalence data of 0.42 and indirect costs estimates from Reynolds et al. (2004), the direct and indirect cost of ME/CFS to society was estimated to be $18,677,912,000 for the community sample and $23,972,300,000 for the tertiary sample. These findings indicate that whether or not individuals are recruited from a community or tertiary sample, ME/CFS imposes substantial economic costs.

Background

According to Jason et al. [1], chronic fatigue syndrome (CFS) affects over 800,000 adults in the United States. This illness is has more recently been referred to as ME/CFS (where ME stands for either Myalgic Encephalomyelitis or Myalgic Encephalopathy). The prognosis for severely afflicted patients with ME/CFS is poor [2-3]. The persistent and debilitating nature of ME/CFS often results in a reduction in work and family life activities, as well as an increase in health care costs [4]. Because it becomes difficult for patients with ME/CFS to continue employment at premorbid levels, many have little choice but to leave their jobs. Indeed, Jason et al. [1] found that participants with ME/CFS were more likely to be receiving disability income, be unemployed, or be working part-time than control participants. Similar findings of higher unemployment rates among patients with ME/CFS were found in Bombardier and Buchwald [5]; McCrone, Darbishire, Ridsdale, and Seed [6]; Reynolds, Vernon, Bouchery, and Reeves [7] and Tiersky, DeLuca, Dhar, Jonson, and Lange [8].

In addition to employment loss, patients with ME/CFS often experience escalating costs of health care due to the search for a more definitive diagnosis and treatment [9]. The economic impact of an illness is typically examined in terms of direct and indirect costs. The former refers to direct medical costs including hospital, ambulatory, prescription medications, over-the-counter medications, and medical laboratory testing. Indirect costs include transportation, work productivity losses, disability reimbursements, loss of leisure or duties at home, or services provided by family members, friends, or other informal care providers [10].

Four studies have examined the economic impact of ME/CFS, three of which use clinic-based, or tertiary samples, and only two of those samples are from the United States. McCrone et al. [6] examined both direct and indirect costs and found a higher proportion of medical service use and unemployment among the ME/CFS group, as well as higher lost employment costs and combined service costs for patients with ME/CFS in tertiary care settings in the United Kingdom.

Using an Australian tertiary sample, Lloyd and Pender [11] estimated an average cost of $9,436 per patient with ME/CFS, including about $2,000 per patient in direct medical costs. Extrapolating this figure to the population of Australia, Lloyd and Pender [11] estimated that ME/CFS cost the government in excess of $25 million and cost the Australian community approximately $59 million.

Bombardier and Buchwald [5] examined the direct cost of patients with ME/CFS in the United States using patients from a referral clinic. The estimated average annual expenditure was $1,013 per ME/CFS patient.

Reynolds et al. [7] used a community-based sample from Wichita, Kansas to estimate the indirect cost of ME/CFS. These authors estimated that the annual total value of lost productivity in the United States was $9.1 billion, or about $20,000 per individual with ME/CFS. The previous studies of the economic impact of ME/CFS provide evidence of the financial burden placed on individuals and their families, as well as on society as a whole, however, none of the previous studies have estimated these costs using both community-based and tertiary samples.

Direct medical costs

Medication usage and costs were assessed in the estimate of direct medical service use. Based on self-reported use and physician exam information, the mean number of prescription medications was 1.6 (SD=2.1) for participants with ME/CFS and .7 (SD=.9) for control participants, however these differences were not statistically significant, t(34)=1.56, p=.13. The mean number of over-the-counter medications was .4 (SD=.6) for participants with ME/CFS and .1 (SD=.4) for controls, and these differences were not significant, t(33)=1.57, p=.13. The total average annual cost of prescription and over-the-counter medications was significantly higher for participants with ME/CFS ($1,159; SD=1426) than for controls ($321; SD=415), t(25)=2.55, p=.02.

Based on medical record data, the mean number of office visits per year was 6.1 (SD=3.6) for participants with ME/CFS and 4.5 (SD=3.4) for control participants, but these differences were not statistically significant, t(34)=1.42, p=.17. Participants with ME/CFS spent an average of $470 (SD=274) on medical office visits, while control participants spent an average of $342 (SD=259). These cost were not statistically significant, t(34)=1.42, p=.17.

Although our data did not include salary variables and indirect costs could only be examined in terms of work status change and increased disability, we could apply the Reynolds [7] figure ($20,000) to our sample. For study 1, using estimates from Reynolds et al. [7], we could estimate that the annual indirect cost to society to be $16,720,000,000 (836,000 X $20,000) or almost $17 billion. Together the total indirect and direct costs to society could be estimated to be $18,677,912,000, or over 18 and a half billion dollars. For study 2, the estimated total annual indirect cost to society is 836,000 X $20,000=$16,720,000,000. Therefore, in study 2, together the total indirect and direct costs to society equals $23,972,300,000 or close to 24 billion dollars. For studies 1 and 2, the total direct and indirect costs due to ME/CFS were estimated to range from 17 to 24 billion dollars.

In conclusion, Jason et al. [1] estimates that more than 800,000 adults in the United States have ME/CFS. This figure combined with cost information reported in the current study suggests that ME/CFS has substantial economic costs, whether one uses samples recruited from the community or from a tertiary care clinic. These cost estimates in combination with high prevalence rates are some of the reasons that more research into the cause, effective diagnosis, and treatment are necessary.

References

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(c) 2008 BioMed Central Ltd.

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$24 billion dollars.  TWENTY-FOUR BILLION DOLLARS.  Per year.  The total amount spent by the US government to research CFS over the past 25 years doesn't even amount to one year's income taxes on that.

Our grandmothers had a phrase for this "Penny wise and pound foolish".  The government would rather throw away 24B a year every year for the rest of our lives than to invest even 1B in finding a cure to get us back to work.  There's something wrong with this picture.