More Insurance Companies Now Paying for Fibromyalgia Blood Test

More Insurance Companies Now Paying for Fibromyalgia Blood Test

By Donna Gregory Burch

Donna Gregory Burch

Donna Gregory Burch

Do you have a family member, friend or physician who doubts you have fibromyalgia? Well, there’s a little-known test you may not have heard of that could finally prove you’re really sick.

In 2013, Los Angeles-based biomedical company EpicGenetics made international headlines when it introduced FM/a, the first ever fibromyalgia blood test.

While FM/a hasn’t caught on in most doctors’ offices, more insurance companies are now paying for the test. FM/a is covered by most Medicare plans. Private insurers, such as Blue Cross Blue Shield, UnitedHealthcare and Aetna, also are starting to pay for the test on a case-by-case basis.

The test’s steep price tag – $794 – has been a deterrent for patients, many of whom are already living on fixed incomes because they’re unable to work due to poor health.

EpicGenetics is trying to make it easier for patients to afford the test by providing free assistance with insurance processing. The company’s insurance processing department contacts insurance companies on the patients’ behalf to find out if the test is covered and what the cost would be to the patient.

(A six-installment, no interest payment plan is available for people who are uninsured or whose insurance won’t cover the test.)

Dr. Bruce Gillis, EpicGenetics’ CEO, says the No. 1 reason patients get the test is to prove to family members and others that they are really sick.

He believes physician bias is the main reason why the test is not more widely used.

“The majority of physicians do not believe that fibromyalgia is real, so they haven’t kept up with the advances that have occurred, including reading something as simple as WebMD, which tells everyone the test exists,” he says. “In under 10 seconds, a Google search reveals the test.”

Many physicians don’t consider fibromyalgia to be a disease; they believe it’s a collection of symptoms and lump it into the “syndrome” category.

And then there’s another group of physicians who don’t believe fibromyalgia exists at all. Patients are routinely told they’re “depressed” or “getting older” – or worst still, the pain, fatigue, brain fog and other debilitating symptoms are all in their heads.

The legitimacy of fibromyalgia has been complicated for decades because of the lack of a diagnostic test to prove its existence. It’s typically a diagnosis of exclusion – meaning illnesses with similar symptoms have been ruled out through extensive (i.e. often expensive) medical testing.

According to EpicGenetics, patients can spend between $10,000 and $42,500 on diagnostic tests leading up to their fibromyalgia diagnosis. That’s a lot of money, and that’s another reason why physicians haven’t embraced the FM/a test, Gillis says.

“Many rheumatologists prefer to offer patients rule-out tests, which they can perform in their office labs, thereby making for a financial incentive to follow that route,” he explains.

A licensed healthcare professional must order the test for the patient. The test requires a simple blood draw, and results are available within five to seven days. It has a sensitivity of 93 percent – equivalent to the blood test for HIV. (No test has a sensitivity of 100 percent.)

Gillis admits he used to be one of those physicians who doubted the existence of fibromyalgia, but the results of EpicGenetics’ research studies have made him a believer.

EpicGenetics focuses on developing diagnostic tests where none currently exist. When Gillis was asked to look at fibromyalgia, he and researchers from the University of Illinois College of Medicine in Chicago theorized that fibromyalgia’s mishmash of symptoms might be caused by a malfunctioning immune system.

The first study looked at a series of immune system biomarkers in 17 patients with fibromyalgia and 17 healthy people, and the results were striking. Researchers found several biomarker abnormalities among the fibromyalgia patients, leading Gillis to conclude fibro symptoms are somehow associated with a suppressed immune system.

“We believe [the term] fibromyalgia is a misnomer,” he says. “These people aren’t suffering with anything that’s affecting the muscles, per say. What they are suffering with is their immune system cannot product normal quantities of protective proteins. …There are cells in the immune system called peripheral blood mononuclear cells. They are not producing normal quantities of the protective proteins called chemokines and cytokines.”

The test focuses on four chemokines and cytokines, which are found at reduced levels in fibromyalgia patients, according to Gillis.

Two subsequent studies, one of which compared fibromyalgia patients to those with rheumatoid arthritis and lupus, supported the results of the initial study, Gillis says.

“These people [with fibromyalgia] have immune system dysfunction,” he says. “These people are really sick. It’s not in their head. … Why aren’t the drug companies knocking down our door to develop a treatment?”

EpicGenetics’ research and the FM/a test aren’t without critics. The American College of Rheumatology does not recognize FM/a as a valid test. Fibromyalgia expert Dr. Daniel Clauw has said EpicGenetics’ studies contradict other research, which has shown normal or elevated cytokine levels in fibromyalgia sufferers.

Researcher and rheumatologist Dr. Fred Wolfe called one of EpicGenetics’ studies “junk science,” saying it didn’t meet minimal scientific standards.

But in 2012, the American Association for Clinical Chemistry gave EpicGenetics an award for outstanding research in clinical and diagnostic immunology for its fibromyalgia research, says Gillis.

EpicGenetics isn’t letting the doubters keep them from moving forward. In the future, Gillis said the company would like to study the DNA of fibromyalgia sufferers to see if a genetic component can be identified. Proceeds from the FM/a test are being funneled toward that effort.

Click here for more information on the FM/a test.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She covers news, treatments, research and tips for living better with fibromyalgia on her blog, FedUpwithFatigue.com. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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Authored by: Donna Gregory Burch

There are 24 comments for this article
  1. Linda Shaw at 10:32 pm

    MichaelL,

    Thanks so much for your response, I have never spoken to another provider with fibro :). What makes it harder IS having to see colleagues for treatment. Since early 20’s I have been diagnosed with psoriatic arthritis, calcific tendonitis, recurrent bursitis’ shoulders, plantar fasciitis, seronegative RA, sjogren’s, fibromyalgia, “depression”, asthma, GERD, yada yada. I will definitely write up my “story” for you and others one of these days.

    Anyhow, I’m an FNP now… I finally diagnosed myself last week by getting my own labs drawn through my cardiologist during an prinzmetal’s angina flare LOL. I ended up with CRP >22, anti-u1RNP positive, ANA +, RF+ … well whatta ya know? MCTD. Now, instead of even thinking myself that I was a nut, I know that the reason I have so many symptoms of RA, sjogren’s, lupus, limited scleroderma, polymyositis, and even a splash of some MS characteristics isn’t because I’m a hypochondriacal uptodate reader, it’s because I have met criteria for them ALL…… except the MS one lol.

    As for your waking in a bradycardic/confused state… let me say that sleep apnea will cause significant bradycardia. My husband has central apnea. He made the mistake of napping without his bipap asv, woke confused orthostatic and ended up in the hospital for “ams” for 3 days…. his HR goes down to 30’s during apneas as do most. If you haven’t had a full sleep study, or they said obstructive and you have a lot of hypopneas, get a bipap asv, cpap is useless and can cause cpap induced centrals :).

    Thanks so much for your input!

    Linda

  2. Layla Rose at 8:02 pm

    @Jean Price. I have been to an endocrinologist. But at the time my test results were mildly hypothryoid. I believe that I definitely have Hashimoto’s but it’s just a matter of getting a diagnosis. I decided to treat myself in 2012. My antibodies keep rising higher and higher and things have gotten worse, brain fog, etc. I treat myself b/c waiting for the docs to actually take action, I’d have probably wound up in a nursing home or something before too long. Brain fog is so horrible. As well as mood swings and touchiness & irritability. I already have ADHD which makes me irritable and another thing which I deal with on my own. Another long story, which I’ll probably explain in my blog, at some point. But I’ve mostly had docs just take a wait and see approach, despite my symptoms being really bad. It’s just that the symptoms were very severe long before the test results showed anything. Plus with the bodies tendency to fluctuate, some docs don’t even believe that things fluctuate, they’re like it’s fine now, how could it be different before? I’m like do you even really know how the human body works? Geez! Many docs don’t even realize how much our bodies can fluctuate over time.

    I’m borrowing money this month to pay bills and buy pills, as my SSD is all wonky at the moment. With moving I lost my extra help with my Medicare premium so I’ve only got enough to pay my rent. I used to live in an SRO. It was horrible. I can’t live like that anymore. I’m only able to do work at night as I also have a Circadian Rhythm disorder as well. So not a lot of lucrative jobs at night.

    Have to go and apply for the subsidy plus my food stamps has to be redone as well. My friend was supposed to help me on the 3rd, but just told me that he can’t help till the 10th. I’m in so much trouble. Wish I had a benefactor. There needs to be more help for people who are disabled. I can’t live like this. It sucks! My Nature-Throid is gone and it’s going to take at least 2 weeks to get more. So besides chronic pain, I’m looking at being hypersensitive to the pain, as well.

  3. Jean Price at 2:34 pm

    Layla Rose…I’m wondering if you’ve been to an endocrinologist to check out your thyroid issues. It truly might be a good idea. Many thyroid conditions can mimic other disorders, and having a low thyroid level should be checked out to rule out thyroid cancer. (Usually, high levels don’t indicate cancer.). There is something called Hasimoto’s disease of the thyroid that often presents with a thyroid level within in range, but low, and responds well to thyroid supplements. I don’t know of any thryroid supplement you can get over the counter, and in fact many endocrinologist recommend the brand name medication for reliability in dosing. If you do have yours checked out, the complete thyroid panel of tests is best, with the TSH (thyroid stimulating hormone), the T-4, and T-3 levels. If others in your family have thyroid conditions, it may be Hasimoto’s, as it is hereditary. Although we often get frustrated with doctor’s attitudes and poor bedside manner, a thorough doctor who understands his or her specialty can be an asset, even if they lack in personality! And thyroid is one thing that can need their expertise to keep you from getting into trouble, in my opinion. By the way, Hasimoto’s is considered an autoimmune disease of the thyroid, and has a whole list of symptoms including migraines and fluid retention. So it’s a good thing to rile in or out for proper care and for feeling your best. Hoping you find what you need.

  4. Layla Rose at 1:05 am

    I used to take Gapentin and it just made me feel all kinds of crazy and strange, not to mention doing nothing for any pain whatsoever. I don’t think I ever had FM, as I’ve got an autoimmune thyroid disorder, and didn’t ever feel relief from any of the stuff that’s for FM, but when I started treating myself for the thyroid thing, all the other symptoms cleared up: depression, hypersensitivity to stimuli, etc. Hardly feel any of that anymore, as long as I have my thyroid meds, which I’ve just run out of and have to buy again. I just buy them myself. I’ve just given up on docs even doing anything for me with regard to that. It’s subclinical and therefore their approach is basically do nothing now, until she’s too sick to move. Pretty much the approach with many things unfortunately.

  5. John Quintner at 7:27 pm

    The belief that fibromyalgia is a distinct disease has no basis in fact. Epidemiological studies now suggest that the constellation of disparate and variable symptoms can best be categorised as a “symptom cluster” – and one that represents a spectrum of polysymptomatic distress that is so commonly found in the community. Telling people that they have a “disease” can only perpetuate the epistemological error and add to their distress. How can we undo 25 years of misinformation?

  6. MichaelL at 3:37 pm

    Linda Shaw,

    One of the hardest things to swallow, when I was a doctor with fibromyalgia, was the criticism from local doctors and nurses, who said “He is crazy”, or a quack, or fibromyalgia is a catch all diagnosis. I also had made the connection between the autoimmune diseases. I had suggested that it possibly shared the same gene as rheumatoid arthritis and systemic lupus erythematosis, when I was in practice in 1995! Both were seen in my family’s past history. It was obviously stress related disease, as well.

  7. MichaelL at 3:29 pm

    I, too, am on gabapentin. Sadly, I have developed the side effect of bradycardia (Holter) found in people older than 55. It caused me to wake up confused and disoriented, one day. I am now in the process of figuring out an alternative, since it has helped reduce the pain to almost nothing! That is with 3200mg/day! I am being refused anything stronger than Tramadol 50mg four times a day! Now, the suffering that had lasted for four years past my injury, is about to start again!

  8. Linda Shaw at 1:25 pm

    In response to Layla Rose and others:

    It is a sad day when fibro sufferers have to get a blood test simply to let their “loved ones” know they aren’t faking, crazy, or drug seeking. I used to be an ER nurse. And while I didn’t dismiss fibro as a “crazy lady” disease like most others, I DID think it was firmly rooted in depression/anxiety and other psychosocial factors. I would take complaints very seriously and spend extra time talking with these patients. And, in part, I was right… there WERE a lot of psychosocial issues… but many were CAUSED by the disease itself. Who wouldn’t be anxious and depressed if they were in constant pain, not believed, and ostracized by family and the medical profession????

    So yes, I was a non believer in fibro as a primary disease…. That is, until I was diagnosed LOL. I think I will submit an article about my journey and belief system as a provider and a patient some time. It may get a good laugh :).

    Thanks for sharing your stories and please know that the ONLY person you need to convince is YOU……… and your doc would be helpful too LOL

  9. Linda Shaw at 1:16 pm

    Two things strike me about this article:

    1. a full autoimmune workup is absolutely necessary in any suspected fibro case because fibro CAN be a sister disease “secondary to” many autoimmune/rheumatologic diseases. And, blood work doesn’t always show positives immediately. I would recommend anyone having symptoms make sure they get labs drawn during a FLARE. And trust me, doctors don’t make much if anything on bloodwork- just the follow up for results. 🙂

    2. the inflammatory cytokine process is not surprising at all. Inflammatory conditions, autoimmune disorders, they are twin sisters. The one thing missing in most write ups for both is a suggestion to get a proper in lab sleep study by a real sleep specialist. Central sleep apnea, obesity/hypoventilation disorder, obstructive sleep apnea are a HUGE factor in inflammation and autoimmune disorders, headaches, fatigue, fragmented sleep, waking to urinate, muscle/joint pain, heart disease, “can’t remember you know what disease”- mental fogginess, among many others.

    Great article and again, I am so happy I came across this website !!

  10. Layla Rose at 2:56 pm

    This is absolutley amazing! I have half a mind to send this to everyone I’ve ever met who doubted me or thought that I was simply malingering or exaggerating. From a very memorable psychiatrist who said that I had a “somatoform disorder”, to many acquaintances who weren’t really supportive and not my friends at all, to guys I’ve dated who said that I didn’t seem as sick as I said or thought I was. So they either thought that I was lying or delusional? What a load of malarky. I wish I’d told them off now. Hindsight being what it is right? Why would they want to even be with someone who is lying and/or imagining things, ya know?

    Anyway, while I’ve since realized, found, & determined that FM isn’t my proper, or at least primary, diagnosis. I have actual scientific evidence of it now, either way. Awesome!

    For years I thought that I was getting SSD for Fibromyalgia, even told that to one of the doubters, he was such a compassionless jerk, then when I had my disability review back in 2013, I came to find out that I was getting it for depression and back pain. What? It made me feel a bit dismissed & like some kind of phony or something. My BFF assured me, at least you have it.

  11. Dria at 1:57 pm

    I’m 26 years old and I’ve been dealing with Fibro pain for the last 5 years of my life..but only recently diagnosed last year. i have had so many lab tests,xrays,mri’s, bone marrow biopsy..all for them to tell me at the time that I was too young to be experiencing the symptoms I was going through (back pain,knee pain,joint stiffness,tender spots,etc). Finally, after having an elevated CPK level in the 1000’s i was referred to a rheumatologist who ruled out Lupus, MS,etc to then diagnose me with Fibro. Ive tried Lyrica, Baclofen, lexapro, gabapentin and my final standing ground….Oxycodone-acetaminopen 5mg. Regardless of how people feel about narcotics, this actually helps me. When taken in the am it helps to lower my pain to some degree so that I can still work my full time job with only having to sit down and relax or grab my heating pad 2-3 times a day. I’m not depending on this is a cure, a miracle, or a “forever” drug..but until i venture into Holistic ideas..this is my minor crutch 🙁

  12. Michael G Langley, MD at 10:48 am

    Rk,

    I am a former pain management doctor, disabled after a broken back and spinal cord injury. Gabapentin, (a seizure medicine) at high does, has decreased my neuropathic pain, but it did not stop it completely. Like every medication that we shove down our throats, none effect everyone the same way! If a doctor keeps using a medication that is not working, or worse, causing side effects, he is negligent!

  13. Linda at 6:54 am

    Hi ! Is this FM blood test available for France / Europe ?

  14. John Quintner, Physician in Rheumatology and Pain Medicine at 4:21 am

    In her article, Donna Burch failed to mention the not insignificant fact that on its updated website (2015), the American College of Rheumatology states categorically that there is NO test for fibromyalgia: http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Fibromyalgia

    The slur cast upon the reputation of Professor Fred Wolfe was quite uncalled for. For the record, I happen to agree with Professor Wolfe’s assessment of the “test” as posted on his blog Fibromyalgia Perplex: http://www.fmperplex.com/2013/02/25/junk-science-junk-ethics/

  15. Claudia drake at 12:58 am

    Dr Clauw is pretty knowledgeable and highly regarded. I think I’ll go with his view. And no money going into his pockets. . . .

  16. Nk at 11:34 pm

    In my case, lyrica sometimes helps and sometimes makes me worse the next day by adding more lethargy and intensifying my chronic headache and I can only take it as needed, not on a consistent basis. That inconsistency is something I can’t fully understand but lyrica is surely not the elixir the commercials make it out to be. I’m on my way to trying cannabis oil and I’m hoping it’s effective without the side effects.

    By the way, I’m one of those that had the blood test and paid the hefty price for it. Although it quenched my curiosity, it did not shed any light on any details and did not contribute to finding an effective treatment. Unfortunately, corresponding with Dr. Gillis following the test was not insightful either, so I was pretty much on my own trying to solve this puzzle. If you can’t afford it and cannot get your insurance to cover it I’d say keep your money.

  17. misti at 10:42 pm

    The only issue I have with the whole article is the $794 price tag for a blood test we all know this company has to make a profit ,the problem is people being totally disabled from Fibro what income do they have ? $794 is a lot of money and get the test on loan and pay in 6 installments @ $132.33 a month
    I do think SSDI and SSI and pain patients who have Fibro it shouldn’t be an issue they should be given option to have the test .
    States are now testing for illegal drug use ,drug test to get food stamps welfare etc.
    I do think in the future to get the Fibro DX this blood test will be mandatory and to weed out addicts that get opiods

  18. Jean Price at 8:45 pm

    Unfortunately, some medication is highly individualized as far as achieving the desired effects. Cymbalta, for instance, at very low doses has been proven very helpful for some patients and some neuropathy pain, yet is not effective for other neuropathy pain even in the same patient! The NSAIDs are very patient specific, in that you could take ten different ones and feel no relief and the eleventh one would be a great pain reliever. Some of the antiepileptics work fairly well for neurogenic pain post surgery in some people with spinal surgery but seem to lose their effectiveness as time goes on, again for some people. All of these medications have many more side effects than narcotics/opioids for the most part…and narcotics/opioids seem to have a better and wider patient population regarding the quality of pain control. Patients who have tried any number of older antidepressants may not put much faith in their helpfulness, yet be surprised at their response when they use a small dose of one of the newer ones. This being said…it’s often a game of hit and miss to find what works for each one, and what side effects a person is or isn’t willing to endure….and physicians must partner with their patients to achieve this. That means they have to assess and believe the patients and both must be willing always to try new combinations of different types of medications AND treatments. I don’t understand why this is so hard? It’s really just standard health care…yet like fibromyalgia, I think pain isn’t perceived by many to be a “real” health problem. And that’s the elephant in the room, I suppose!

  19. JP at 1:01 pm

    Rk – I agree. Lyrica increased my depression and did not relieve any pain at all. Cymbalta also did not help my pain and was very, very difficult to taper off. It’s been a few years since I stopped taking them and I have muscle jerks, throughout my body. Just had another one a second ago in my left ankle. What the????

  20. Vickie jarosz at 12:49 pm

    Anti seizure meds also did nothing for my pain and made me crazy. Opioids do not work nor do anti depressants.

  21. Richard A. Lawhern, Ph.D. at 12:21 pm

    Actually, the anti-seizure drugs do help in certain types of neuralgia and neuropathy pain. So does the class of tri-cyclic antidepressants (Amitriptyline, Nortriptyline, others) used at lower doses than the therapeutic range for depression itself. A positive pain reduction in response to a short course of Tegretol (Carbamazepine) is considered by physicians to be one of the better confirmations for a diagnosis of trigeminal neuralgia. These medications can have severe side effects for a substantial fraction of those who take them for either pain or seizures. But for those in whom side effects are manageable, they can be a blessing.

    For patients whose doctors have been dismissive of a diagnosis of Fibromyalgia: the US NIH fact sheet on Fibromyalgia indicates that over five million people above the age of 18 in the US have symptoms which align with this disorder. The fact sheet unfortunately continues to use the term “syndrome”. This is understandable given that the disorder presents with quite a range of symptoms and degrees of disablement. This variability is also common in other neurological disorders. But the reality of a distinct medical entity associated with the pain patterns of fibromyalgia can no longer be in doubt. Any doctor who proclaims such nonsense to their patients should be reported with complaint to the management of their medical practice — or in particularly abusive cases to the State Board of Medical Examiners in their US State.

  22. Dave at 12:20 pm

    Companies shouldn’t be capitalizing off of “contested illnesses. Instead doctors should be fined and required to create a plan of correction when they are biased toward a medical condition. In addition- their states licensing board should also be required to submit a plan of correction. Its time for medicine to grow up and treat people in pain without bias

  23. Rk at 4:22 am

    Thats why its so controversial because somehow people think these anti seizure drugs help pain which is absurb. When it was prescribed for me i asked why are youvputting me on a med for someone who has seizures??Made no sense and did nothing for my pain.