The High Cost of Fibromyalgia

When Did You Become Aware that Fibromyalgia Is One of the Most Poorly Funded Diseases at the NIH?

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Founder of Health Rising and Phoenix Rising
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"The aim of this review is to find and highlight the hidden but alarming data about the difficulty of the diagnosis and management of FM"Ghavidel-Parsa et. al

The widespread pain and the many other symptoms (fatigue, post-exertional malaise, poor sleep, fibro-fog, gut problem, etc.) found in FM make it by any assessment a difficult disease to deal with. But how much of a burden does fibromyalgia actually place on patients and society at large? With an increasing focus being placed on using "burden of illness" to assess funding levels it's a good time to take a look at the costs FM imposes.

A recent article did just that. It portrays a disorder that produces a surprisingly high disease burden yet is provided surprisingly few resources. It provided the foundation and jumping off point for this blog.

The Iceberg Nature of Fibromyalgia Burden: The Clinical and Economic Aspects Banafsheh Ghavidel-Parsa, Ali Bidari,* Alireza Amir Maafi,† and Babak Ghalebaghi. Korean J Pain. 2015 Jul; 28(3): 169–176. Published online 2015 Jul 1. doi: 10.3344/kjp.2015.28.3.169

Fibromyalgia is common. It's not the most common rheumatic condition but it may be the most poorly treated one. FM patients make up from 15-20% of all visits to primary rheumatologist clinics, making it the second or third most commonly seen disorder there. (The most common rheumatic conditions in the U.S. are low back pain (59 million ), neck pain (30 million), osteoarthritis (29 million), gout (8 million), fibromyalgia (5-10 million).

Low Diagnosis Rates

[/fright]Poor diagnostic rates suggest FM patients may not be appearing at clinics as frequently as they should. The lack of specific diagnostic tests - a function probably of the poor research funding given the disorder - means fibromyalgia is diagnosed using symptoms - a surprisingly complex requirement for already overburdened doctors. Studies suggest that few doctors are aware of the ACR criteria for fibromyalgia. One study of family physicians indicated that 96% got the diagnostic criteria for fibromyalgia wrong. One study found the average FM patient about three years and four different physicians after the initial onset of their symptoms to get a diagnosis.

Wandering from doctor to doctor looking a diagnosis is stressful in itself but so is being misdiagnosed. FM is often misdiagnosed as lupus, rheumatoid arthritics, somatization disorder, depression, etc. resulting in excessive (and expensive) testing and inappropriate treatments that increase the burden of the illness.

Speaking of diagnoses, people with fibromyalgia tend to have high rates of comorbid disorders (4.2 per patient) - a fact that probably reflects several factors. The many symptoms present in the disease suggest FM patients will fulfill the criteria for other disorders (IBS, sleep and mood disorders) plus the often years long search for a diagnosis tends to result in more diagnoses.

High Direct and Indirect Costs

The significant HRU and costs associated with FM in the US, France, and Germany documented in this study highlight the substantial global economic burden of FM. Knight et. Al.

Several studies have examined the direct (medical care) and indirect (productivity loss, changes in employment status, disability, family assistance) costs of fibromyalgia. FM patients see a doctor on average about once a month and are hospitalized once every three years. The mean direct annual cost per patient ranges from about $2,000 to over $10,000 a year depending on severity. People with severe FM (65% in one study) averaged over $10,000 a year in direct medical costs.

Most of the costs due to fibromyalgia, however, are caused by indirect costs due to lost productivity and disability. The complete indirect costs of FM are rarely accounted for (an insurance company study indicated that FM cost companies $57-$143 in indirect costs for every dollar they spent on medical claims) but one study suggested that the indirect costs for a severely ill FM patient average over $30,000 a year. Throw the indirect and direct costs together and you have a staggering $40,000 plus bill year in and year out for the severely ill.

[/fleft]Fibromyalgia may impose a greater burden than some other chronic illnesses. Studies indicate that the burden of illness FM imposes is comparable that found in diseases such as osteoarthritis, rheumatoid arthritis (RA) and diabetes. FM's direct medical costs - which account for substantially lower losses than the indirect (productivity) costs - are similar to those found in rheumatoid arthritis. In fact, people with FM visit emergency rooms, have more doctor visits and engage in physical therapy to a great extent that people with RA. Since FM is at least three times and may be six times as common as RA it likely imposes from three to six times as great a societal burden as RA.

Direct medical costs for FM patients were about three-quarters of those for people with osteoarthritis (@$8,500 vs $11,200 year). FM and osteoarthritis patients has similar numbers of "missed absence days" (17 vs 20) per year.

A recent study found a higher disease burden in FM than in people with chronic widespread pain. Health status, the number of other diagnoses, work impairment and direct and indirect costs were all higher in FM patients.

Poor Treatment Effects

The result that emerged from this longitudinal study was one of generally continuing high levels of self-reported symptoms and distress for most patients, but a slight trend toward improvement. Walitt et. Al. 2011

After getting a diagnosis high rates of doctor visits reflect a disease in which the clinician largely relies on trial and error to find appropriate treatments. One large study found FM patients using 182 unique types of treatments.

A large longitudinal survey (1555 FM patients) of up to 11 years underscored the need for better treatments. This 2011 study found that only 15% of FM patients reported moderate improvement and only 10% reported a significant improvement in their pain over time. Instead the trend was more to increased than decreased pain with overall severity and pain increasing in 36 and 39% of patients. It should be noted that this trend appears to have occurred during a time when three FDA approved drugs (Lyrica - 2007, Cymbalta - 2008, Savella - 2009) came on the market.


Studies suggest that diagnostic rates are low, prevalence is high, direct and indirect costs are high and treatment effects are low but people with FM have another burden to face. Rates of "invalidation" and "discounting" - in which severity of the patient's symptoms are discounted by the physician - appear to be high. Studies indicate that the lack of validation by a physician results in increased distress and troublingly, the perceived need for a patient to hide their symptoms from their healthcare providers, fellow workers and families.
The Sum Total - Low Quality of Life

In the swirl.jpg
[/fright]Is it any surprise, then, that perhaps the most important medical scale of all - quality-of-life - appears to be very low in FM? Few quality of life studies have been done but those have suggest that quality-of-life is lower than in many other chronic diseases. A 1993 study found lower quality of life in fibromyalgia vs. rheumatoid arthritis, osteoarthritis, permanent ostomies, chronic obstructive pulmonary disease, insulin dependent diabetes. A later study found that functional limitations and quality of life were as severe as found in major depression in one study.

Remarkably, the level of psychological distress was higher in patients with fibromyalgia compared to patients with complex regional pain syndrome (CRPS) or chronic low back pain. (p < 0.01). Almost 35% of FM patients in a recent survey were on disability - an extraordinary figure given the difficulty of getting a satisfactory disability outcome.


The research has been done. The statistics indicate fibromyalgia is a relatively common disease that produces high personal and societal costs yet it remains one of the most poorly funded diseases. The federal government spends about $11 million a year on FM or approximately a dollar per patient per year (using the 10 million patient figure).

Contrast that $11 million with the funding that other chronic disorders such as arthritis ($245 million),lupus ($100 million) and multiple sclerosis ($105 million) get from the NIH. Consider that multiple sclerosis with its significantly lower prevalence (400,000 vs 5-10 million) inflicts ten to twenty times less societal costs than FM yet it receives ten times the funding.

Or contrast FM's funding with another poorly funded disease - chronic fatigue syndrome. You can get a sense of the extraordinary neglect FM currently receives at the federal government by considering that chronic fatigue syndrome, one of the most poorly funded diseases of all, gets about 10 times more funding per patient ($9) than FM does.

That's a remarkable finding given that fibromyalgia has three factors ME/CFS advocates have long believed necessary to legitimize it and advance its funding levels: a strong sounding name, FDA approved drugs, and a location in an Institute. None of these, clearly, are sufficient to obtain adequate funding.

[/fleft]So what has gone wrong with FM? FM, like ME/CFS, is bears the burden of being a relatively new disease that has to fight against misconception produced early in the illnesses history. The fact that much of the leadership in the NIH dates back to times when FM was considered a suspect disease can't help. Stephen Katz, for instance, the leader of the NIAMS Institute FM is housed in at the NIH has lead NAMS for 20 years. He has overseen a dramatic decline in FM funding. He was the leader when FM was considered a minor disorder; it doesn't appear that his views have changed.

FM also shares with a host of other poorly funded diseases (migraine, chronic fatigue syndrome, interstitial cystitis, vulvodynia, chronic pelvic pain) characteristics (female predominance, low death rates, high rates of pain/fatigue) that appear to impair funding at the NIH.

Consistent advocacy efforts to address fibromyalgia's funding shortfalls don't appear to have been occurring. Aggressive advocacy is needed to break up the prevailing "conversation" that surely prevails at the NIH around FM - one that asserts FM is not a serious disorder deserving of significant funding. Until that idea is supplanted with another one -that FM is a serious disorder that has significant societal impacts - FM will, by default, continue to linger at the bottom of the funding barrel at the NIH and people with FM will not have access to the treatments they deserve.

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