Note: We have reproduced this article with kind permission of the author, ME/CFS patient advocate Courtney Miller. By starkly contrasting the enormous costs of this devastating disease with the small amounts spent on research, Courtney makes a mighty case for proper support of scientific efforts to find a cause and a cure.
Summary
1. Chronic Fatigue Syndrome patients number between 1-4 million
2. Direct costs to US taxpayers for Social Security Disability, Medicare and Lost Taxes range from $4.5 billion to $19.6 billion annually
3. Indirect Costs to US economy for lost productivity and medical expenditures range from $19 billion to $51 billion annually
4. NIH spends $6 million per year on ME/CFS research (between $1.50 and $7.17 per patient)
| Annual CFS Costs by Prevalence Estimate |
| CFS Annual Costs |
0.42 Prevalence
(2004, 2008 Studies) |
2.54 Prevalence
(2011 CDC Study) |
| CFS Patient Population |
836,000 |
4 million |
| |
| Direct Costs (Total) |
$4.5 billion |
$19.6 billion |
| Social Security Disability |
$2 billion |
$9.7 billion |
| Medicare |
$1.6 billion |
$8 billion |
| Lost US Tax Revenue |
$850 million |
$1.85 billion |
| |
| Indirect Costs (Total) |
$19 billion |
$51 billion |
| Medical Costs |
$2 billion |
$14 billion |
| Lost Productivity |
$17 billion |
$37 billion |
| |
| NIH Research on CFS |
$6 million/yr |
CFS Population
The Centers for Disease Control and Prevention (CDC) estimates that between 1 and 4 million Americans suffer from Chronic Fatigue Syndrome, known as CFS or ME/CFS, finding a prevalence rate of 2.54% among adults in a 2007 study published by CDC researchers.(1) According to CDC published research, the estimated prevalence of CFS has risen from 14,000 in 1993 to 471,000 in 1999 to 4 million in 2007.(2)
The most frequently cited research on the economic impact of ME/CFS is a 2008 peer-reviewed study by lead author Leonard Jason, funded by the NIH and published in Dynamic Medicine (“Jason Study”).(3) The Jason Study used a 1999 prevalence rate of 0.42, or 836,000 patients, a much lower rate in use until 2007.
In 2011, CDC researchers published a new study estimating total costs of ME/CFS well in excess of previous studies, using its 2007 estimate of 4 million patients (“2011 CDC Study”).(4)
Below are estimated cost data for both patient population estimates from peer-reviewed studies.
Direct Costs
According to a 2004 study co-authored by CDC scientists, “Approximately one-quarter of persons with ME/CFS, who would otherwise have participated in the labor force, ceased working.”(5)
The only publicly available estimate of ME/CFS patients drawing disability is in a 1999 study published in
Archives of Internal Medicine. That study analyzed a community-based sample from Chicago, and estimated the percentage of people with ME/CFS on disability was 19%, compared to 0% for controls.(6)
As of December 31, 2010, the average yearly payment amount by Social Security Disability was $12,816 per person.(7) Based on the 1999 Archives of Internal Medicine study, an estimated 158,840 persons with ME/CFS are on Social Security Disability, costing $2,035,693,440 each year. Using 2007 prevalence of 4 million patients and the same 19% disability estimate, Social Security Disability payments cost $9,740,160,000 annually.
We assume the number of individuals with ME/CFS on Social Security Disability will likely be covered by Medicare as well. The average payments made on behalf of a disabled Medicare beneficiary in 2009 was $10,484; therefore, the total Medicare cost for ME/CFS patients would be $1,656,472,000 annually, based on the lower 1999 prevalence rate.(8) Using 2007 prevalence of 4 million patients, Medicare costs rise to $7,967,840,000 per year.
The 2011 CDC Study determined that approximately half of the lost productivity cost associated with ME/CFS is attributable to lost wages. This estimate is important because lost wages directly reduces federal tax revenue.(9) If we assume a conservative 10% tax bracket for ME/CFS patients, ME/CFS is reducing federal tax revenue by approximately $850 million per year on older prevalence rates, or $1.85 billion annually on the CDC’s 2007 prevalence estimates.(10)
Indirect Costs
According to the Jason Study, [annual] medical costs were estimated to be $2,342 per ME/CFS patient, or $2 billion based on 836,000 CFS patients. The Jason study estimated lost productivity at $20,000 per ME/CFS patient, or $17 billion annually based on the lower patient population estimate.(11)
In the 2011 CDC Study, researchers published new data estimating total costs of ME/CFS in the state of Georgia. “For example, extrapolating our data to the U.S. population ages 18-59, CFS could account for as much as (or as little as) $14 billion in healthcare expenditures and $37 billion in lost productivity. However, this estimate should be interpreted with caution given that our data stem from a population based study in Georgia.”(12) We note the study’s caution about extrapolating the Georgia cost findings to the national population, while underscoring that more recent prevalence rates are rising and are roughly 5 times that of the patient population used in previous national cost estimates.
NIH Research Spending
Despite the documented costs of ME/CFS to the nation, the NIH has only dedicated $6 million per year to scientific research on ME/CFS.(13) By comparison, NIH spends $151 million annually on multiple sclerosis research, which affects 250,000 to 350,000 Americans, according to NIH’s website.(14) Considerable progress has been made on treating MS as a result of this research funding.
The CFS Advisory Committee, a body of experts which advises the Secretary of Health, has made core recommendations that NIH establish and fund Centers of Excellence for ME/CFS clinical management, research, treatment and clinical trials 6 times in the last 7 years: 2004, 2005, 2007, 2008, and twice in 2009.(15)
No complicated disease can be scientifically decoded with $6 million in expenditures from the leading scientific institutions in the country.
Until funding is increased dramatically, most disabled ME/CFS patients will be unable to dream of returning to productive work, like many HIV patients now can, and the costs to the US government and economy will continue to escalate.
Endnotes
1. 4 million cited in 2011 CDC study: Lin et al.:
The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs. Cost Effectiveness and Resource Allocation 2011 9:1. 2011 study cites prevalence rate from 2007 CDC study:
Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia WC Reeves, JF Jones, E Maloney, C Heim, DC Hoaglin, RS Boneva, M Morrissey and R Devlin
Population Health Metrics 2007, 5:5 doi:10.1186/1478-7954-5-5 (lead authors from the CDC)
2. GAO report to Senator Harry Reid on CDC and NIH Research Activities related to CFS, 2000, p. 32. (
http://www.gao.gov/archive/2000/he00098.pdf)
3.
The Economic impact of ME/CFS: Individual and societal costs Leonard A Jason, Mary C Benton, Lisa Valentine, Abra Johnson and Susan Torres-Harding
Dynamic Medicine 2008, 7:6 doi:10.1186/1476-5918-7-6
4. Lin et al.:
The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs. Cost Effectiveness and Resource Allocation 2011 9:1.
5.
The economic impact of chronic fatigue syndrome Kenneth J Reynolds1, Suzanne D Vernon2, Ellen Bouchery3 and William C Reeves*2
Cost Effectiveness and Resource Allocation 2004, 2:4 doi:10.1186/1478-7547-2-4
6. Jason, L. A., Richman, J. A., Rademaker, A.W., Plioplys, A. V., & Taylor, R. R. (1999.
A community-based study of chronic fatigue syndrome. Archives of Internal Medicine, 159, 2129-2137.
7. Disability numbers retrieved from:
http://www.ssa.gov/OACT/FACTS/index.html
8. Medicare numbers retrieved from Medicare & Medicaid Statistical Supplement 2010 edition (Table 3.4,
Persons Served and Program Payments for Medicare Beneficiaries, by Demographic Characteristics: Calendar Year 2009
9. Lin et al.:
The economic impact of chronic fatigue syndrome in Georgia: direct and indirect costs. Cost Effectiveness and Resource Allocation 2011 9:1. “Lost productivity accounted for 82% of the total cost of CFS, with almost half of productivity loss attributable to lower rates of employment.”
10. 50% of $17 billion x 10%= $850 million OR 50% of $37 billion x 10%= $1,850,000,000
11.
The Economic impact of ME/CFS: Individual and societal costs Leonard A Jason, Mary C Benton, Lisa Valentine, Abra Johnson and Susan Torres-Harding
Dynamic Medicine 2008, 7:6 doi:10.1186/1476-5918-7-6
12. Lin et al.:
The economic impact of chronic fatigue syndrome in Georgia: Direct and indirect costs. Cost Effectiveness and Resource Allocation 2011 9:1.
13.
http://report.nih.gov/rcdc/categories/
14.
http://report.nih.gov/rcdc/categories/ and
http://newsinhealth.nih.gov/issue/mar2011/feature2
15.
CFSAC Recommendations Since September 2004
