Have you faced discrimination by the health-care industry because you have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS)? Too many of us have faced it in one form or another, and a coalition of advocacy groups is trying to do something about institutionalized discrimination.
The following excerpt is from a letter sent to the California attorney general by the groups Healthy African American Families, Familia Unida, and For Grace:
"We are writing to ask that your office investigate an unscrupulous health insurer practice that denies California patients in pain access to critical medication. We are concerned that this insurer practice particularly discriminates against African American and Latino families, those living with disabilities, and women, especially those in low-income communities."California insurers, including Blue Shield, refuse to initially cover doctor-prescribed and FDA-approved treatments. Some insurers require that patients fail on up to five medicines before they can have access to the one the doctor initially prescribed.
"The result of this practice is that members of minority and low-income communities are denied access to new and better medications, and that they experience prolonged pain and often deteriorating health. . . .
"Denying patients in pain access to medication is more than a quality-of-life issue. When a single mother suffering from fibromyalgia is forced to try multiple pain treatments that do not work, she often must miss work, and arrange childcare and travel, which threatens her livelihood and ability to provide for her family."
This is much more than a California Medicare/Medicaid issue -- I've faced it myself. My insurance company won't pay for the expensive drugs currently FDA approved for FMS unless I've failed with multiple less expensive drugs in the same class. However, it also won't cover off-label drugs. Quite a catch-22!
When you add in that those of us with FMS and ME/CFS are especially likely to have adverse effects, and most of the medications we take need to be tapered off of gradually, you end up with a lot of wasted time and physical hardship by the time we've tried a handful of different medications.
I was struck by how frequently we're discriminated against when one of my About.com colleagues, First Aid Guide Rod Brouhard, posted Readers Respond on Healthcare Discrimination, and 2 early responses were from fibromites.
Have you faced this kind of discrimination? Have you felt discriminated against by health-care workers because of your condition? Have you faced discrimination at work, or in some other capacity? Share your experience by leaving a comment below!
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My insurance would provide benefits for Provigil for the fatigue that I suffered from.
After a disastrous attempt with gabapentin (side effects were horrendous), my doctor prescribed Lyrica, but Blue Shield of California refused to pay for it. Finally, after three weeks and paying my doctor $25 to write two letters to them, BS agreed to pick up 60 percent of the cost of Lyrica, which still left me out of pocket quite a bit of money. And, wouldn’t you know that, despite all that, the Lyrica didn’t work? :\
Have been on Meloxicam for past 3 years. This most recent renewal required my doctor to document why other treatments did not work or had undesirable effects. This process cost me $30 for her time in addition to my time, aggravation, etc. Insurance: Blue Cross/Blue Shield.
When I first took gabapentin, the side effects were very disruptive to my life and I stopped taking it. My pain has been much worse in recent years and the Lyrica kept me from functioning at all so I tried the gabapentin again. It took several months for the “vertigo” feeling to either dissipate or else I just got used to it. My doctor has since increased my dose and I just wait until I’m home for the rest of the day to take a half dose and then I take a full dose at bedtime. It does help. Good luck.
My mother has a mail-order pharmacy. They CALL HER DOCTOR’S OFFICE to suggest she try other medications, and the girls in the office had given the OK!
Mom will take pills that may add up to 150mg a day, but say, she takes 3 50mg pills a day. Guess what the mail order pharmacy sends her?!? They send her 150mg pills!
My mail order pharmacy “calculates” how many inhalers I should get when the prescription says “dispense 3.” If the prescription says “use as needed” then you’d better guess that no matter how many is on the “dispense line,” they will send me the MINIMUM number they can send me.
These mail-order pharmacies are “playing doctor.” There’s just really something wrong with that.
You know how Forrest Gump said that “Life is like a box of chocolates… you never know what you’re gonna get”? Well, when I open the shipping bag from my mail order pharmacy, I never know what I’m gonna get, either!
Our health care coverage is with my husbands employer (a health facility, by the way) They recently changed benefits from $10, $15 or #20 co-pays for medication to a $2,300 deductable. Yes you read that right. When we inquired with other health insurance companies I was told my premium would be at least 50% higher because I have fibromyalgia.
In the UK, within the National Health Service, I have found, to my cost, that ME/CFS is all in the mind until proven otherwise, and that the definitive cure is graded exercise, cognitive behaviour therapy, and antidepressants. If, as happened in my case I became considerable worse, the patient is then discharged as being ‘treatment resistant.’ To receive the correct treatment means 100% private medical care at full cost, or you will remain ill.
My husband and I both have FMS, ME, and MPS. I was discriminated against yesterday at work. I had seen it happen to my husband, but I finally got to experience it myself.
I’ve gone through every medication approved for FMS, but I had to go off all of them due to them making me more ill without doing anything for my illness. Talk about six months of extra pain and sick time for nothing. I’m still dealing with the adverse side effects almost 2.5 months later. I’m going to have to go to a doctor outside of insurance who will actually assist me in getting better or at least maintaining some sort of ability to do anything.
My husband can’t get insurance because of his illnesses and is currently struggling to get all the testing done to make a case for disability. He’s been to ill to work for two years and is getting worse while making small progress in regards to his chronic pain.
I’m so tired of people not understanding and doing more harm than good due to the lack of information and proper research.
I had to change the company covering me for drug costs in order to try Lyrica and Lidoderm patches (I am on Medicare). The Lidoderm patches are still pretty expensive but they do work. I love them! The Lyrica didn’t so it’s back to the gabapentin which did work most of the time. I was hoping that Lyrica would work all of the time — too high an expectation, I guess.
Medicare seems to be easier to deal with than private insurance — or maybe I just haven’t hit the bad situations yet.
I was also discriminated against when I was working for an insurance company — they, of all companies, should be sympathetic to illnesses — one would think. I now work part-time for the county library as a substitute clerk and they have been very understanding about my disease.
To Andrew Porter – Agree with you Mr Porter. At least you have been offered the CBT (all in the mind treatments), in my place even this is not offered let alone simple treatments such as pregabalin! And I am a doctor – do you know how difficult it is to get approval for any treatment whether physical or psychological?. The problem is the perception by doctors that much of these medically unexplained syndromes is all ‘in the mind’ and by patients that all is ‘in the body’. The real truth is probably somewhere in between. As long as we have this ping-pong, we will never get anywhere with the funders be it the Government or Insurance industry. We need to meet in the middle and co-operate rather than bash each other.
‘The Terrorists of Health: The Chronic Fatigue Syndrome Jihad’
By Californian rheumatologist Dr. Mark Borigini
Eternal hell to the non-believers.
Published on January 20, 2010
http://www.psychologytoday.com/blog/overcoming-pain/201001/the-terrorists-health-the-chronic-fatigue-syndrome-jihad
“Recently, there were all kinds of blogging and blustering over the internet regarding the XMRV (xenotropic murine leukemia virus-related virus), a retrovirus researchers have found may be associated with chronic fatigue syndrome. However, it is a novel finding, and far from being the proverbial sure thing for those who are searching for the sure thing in the quest for the etiology of chronic fatigue syndrome.” Continue reading.
(Edited to provide direct link and remove copyrighted material.)
I understand everyone’s concerns and situations. I too have Fibromyalgia and just recently my insurance or should I say some doctor provided by my insurance decided I no longer needed my therapy. Mind you I have never spoken to or even less seen this doctor whom made this decision. Therapy was helping me to walk. When I first started I could not walk; they got and have kept me walking. I am not on a regime that works for me. Lyrica did not work and I am currently on Cymbalta and that is not working either. To my understanding I have a way to go considering I have only been diganosed 3months ago but have been dealing with Fibromyalagia since January. Just want to wish everyone her much strength and I am a Christian so I won’t say good luck but God will provide a way for us all.
I have Medicare and tricare and every doctor i have applied to takes my insurances, however they all say “we don’t think our practice can handle you.” Today i was turned down by yet another doctors office and was told even though i just wanted a doc to handle colds etc. they wont take me on due to my fibro. What the heck do i do now? that was the last doc office in town taking new patients and i’m out of luck!
I work in a 24 hour state hospital and they’re saying they can fire me, or move me to a lower paying position, if I can’t do forced overtime, which is 16 hours 2x a week, on top of a 40 hour work week.
I can barely do my time. I call in at least twice a month.
I can’t afford to retire with only 11 years in at the state. I only would get 1/4 of my pay. People think the state is great, but it’s NOT, you have to work 20 years for 1/2 your income for retirement. I don’t think I’m going to make it another 9 years.
I’m at the end of my rope. We don’t get SSI because we don’t pay into SSI. We can get NDI (nonindustrial disability) for 6 months max. Then, I just found out, (they keep it secret) if you work 10 days without taking sick time (2 weeks) you can apply for NDI again. I don’t know how long this can last. I used it for 6 months and I’m still sick and tired with CFS, but they used up all my FMLA while I was out, so all I have left is more NDI or limited duty, which only lasts 45 days.
I don’t want to go on NDI again, because I need the money and time toward retirement. I do my job just as well as everyone, I just can’t do anything else. I have no life.
I lay around until work, and nearly all day on my days off. I have all the viruses so high they’re off the charts, and the antivirals make me sicker so I just stopped taking them. I can’t take them and work.
I want to find a lawyer to protect my right to work without being mandated overtime due to my disability. Has anyone ever done that? Lawyers here don’t take cases unless they know they can win them. I need some cases and names.
Thank You and good luck to everyone. God help us.