My Story: Healthcare Companies Causing Pain

My Story: Healthcare Companies Causing Pain

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

My healthcare company, United Healthcare, is once again making me sick – and I’m mad as hell because I hate to be victimized. How can they arbitrarily take away a medication that’s been successfully working for decades!?

About 30 years ago, I started having severe pain in the left side of my abdomen and throat. This was on the heels of a ballet injury leaving me with excruciating right leg pain that had spread bi-laterally.  Nearly 14 years later I learned that I had Complex Regional Pain Syndrome.

While the leg pain made it impossible for me to dance – and for the most part walk – the abdomen and throat pain was more torturous because it left me unable to sing and even speak. I’m a talker and it was nothing short of hell to be doubled over with abdominal pain when I dared to let a sentence escape. In fact I ended up mute for five years using sign language and writing on a board to communicate with my life-partner and caregiver John.

I was eventually – after several endoscopies and different “crazy” labels – accurately diagnosed with a hiatal hernia which means my upper stomach was literally pushed out above my diaphragm. The pain was always at a level ten during those years as the accompanying acid reflux triggered a CRPS flare.

My GI doctor had me try three high-powered antacids, none of which controlled the reflux or pain and gave me extreme dizziness. He then patted me on the head, saying there was nothing more he could do and that I should stop thinking about it.

In desperation I sought out a young female doctor who was wonderfully caring. Dr. Gorman told me of a more expensive ant-acid medication that I should try. It was a miracle. The Axid immediately took away about 90% of the reflux and pain – and while limited from the CRPS flare, I was talkin’ up a storm again. Fifteen years later, I even began to sing.

Late last year I received a letter from my Medicare Part D provider informing me the generic version of the Axid I was taking (nizatidine) was no longer on their formulary.  I was further informed that I’d have to switch to one of the three generics I’d unsuccessfully tried 30 years prior.

I could either accept one of these offered meds and once again become doubled over in pain and mute – or fight along with my doctor to get a “formulary exception.” I chose to fight. And, boy, did we fight!

On December 22, it seemed victory was at hand when my doctor’s assistant informed me that her office had received an approval for nizatidine. But earlier this month when John went to pick up my script, he was told I was not covered by my insurance company. Yes, they had reversed their own decision without informing me – a practice my doctor’s assistant shared is not uncommon and drives everyone in their office batty!

Clearly we were (and are) battling a rigged system, a healthcare-for-profit scheme that has no concern for me or any patient. It was only about the bottom line. I was scared because I only had two weeks left of nizatidine…and talking.

Since then my doctor has worked thoroughly with me to file two URGENT appeals on my behalf. Both appeals were quickly denied. Worse yet, I got the news from an automated caller. They didn’t even have the decency to have a human being hand down my sentence. Perhaps that would be uncomfortable for them. Perhaps it would cost them money.

I have two days left of talking – and my doctor has put in one final “hail Mary” appeal. Please pray for me…

This is complete, utter madness. We need a law that prohibits health insurance companies from cutting patients off from meds that have given them quality of life and a reason to live for years, even decades. I intend to take up this battle with the legislators I know in Sacramento and DC… assuming I’m able to speak.

Cynthia Toussaint, who founded For Grace, a Los Angeles based non-profit that focuses attention on women in pain, writes occasionally for the National Pain Report.

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There are 26 comments for this article
  1. kimber applegate at 8:54 am

    Cynthia
    I feel so sorry to read of your experiences with UHC, I went with them for one yr, choosing them for my Medicare D provider. Absolutely the worst mistake of my life I have variious back issues and my meds usually run approx $100.00 a month. At the time I was with them I was unaware of Good Rx, and on Cymbalta. I am on Social Security Disabilty and due to what I make, and the many conversations with them , and tearful conversations with Phizer, etc, I didn’t qualify for any help, told my Dr, I couldn’t afford a $45.00 co pay. I asked on FB how do those people at UHC sleep at nite screwing the elderly over, who make less than I do? Needless to say , that post lasted about 10 min on their website… BC/BS is minimaly better , but what a racket. Good RX has cut my costs on many of my scripts . I wish you all the luck in your journey .

  2. Angel at 1:13 pm

    Unfortunately it’s worse under universal health care. While it sounds a grand idea in practice it’s much worse than the current broken system. I suggest following the British system in their news for awhile. I would be dead under the British system. I can wholeheartedly agree that this system is absurd. My husband has an appeal with our insurance currently over his lung medications. The Pre Authorization process the nameless pharmacists who work for the insurance cos to deny patients, it’s heartless and wrong

  3. Jean Price at 2:53 pm

    Barb Hite…I’m guessing if you have a Medicare Part D insurance for your meds, they won’t be able to do this. Do you know if that’s true? (Most rebates and coupons for reduced co-pays aren’t allowed…actually Medicare’s rule, go figure!) I’m not sure if what you’re talking about might be acceptable.

  4. Barb Hite at 2:32 pm

    Barbie
    For all of you that get your RX covered by your insurance go to google and type in rebates.com. I had a RX for fiorecet which United Healthcare denied so I had to pay 38.50, but this company e-mailed me a coupon for 75% off. Gave me an approval # showed it to the pharmacy and the RX was like 14.00!! They don’t charge you anything, don’t have to qualify for it.
    Best wishes.

  5. Jean Price at 12:34 pm

    Dr. Carpenter…it’s really nice when someone who has a mental health background is supportive of the people with chronic pain who struggling to find help and hope through medical doctors…and not only not succeeding but being labeled broken! I truly commend you for your compassion and I’m sorry you have had these problems touch your personal life and your wife’s. I would go out on a limb here and say the mental health component of chronic, life limiting pain is because it starts with a loss…and unresolved grief is the biggest issue. There really are no good programs in place to deal with grief except hospice affiliated classes. And I don’t believe there are a lot of private grief counsellors outside of hospice either. (I would imagine grief based therapy would also help more people with true addictions than the therapy models do at present.) The program I was involved with prior to my own medical issues was not based on the stages, but rather the tasks of grieving. It wasn’t whether or not a person grieved…that was a given with any loss. It was whether they choose to accept the reality of the loss or deny it. The tasks were based on this decision. Going through a five week course as part of my job was the single best thing I use now to help me with the emotional, mental health dynamics of chronic pain. And we all know the system at present generates a lot of emotions for us to deal with beside our chronic pain! It also helped my parenting, my marriage, my friendships, my spiritual growth, and just the simple losses of aging!! I can’t say enough about the importance of this for me and I believe all people with chronic pain could benefit from the tools it provides. Just realizing the feelings of grief, including simple depression are normal is a help. I’m not sure how much exposure to grief counseling you’ve had, but I’m trying to make some inroad with this for those in pain. If you have any suggestions, I’d welcome them. Thanks again for your comments and concern!

  6. Dr. Dan Carpenter at 10:59 am

    I am a retired clinical psychologist so you might expect me to be offering kudos to your doctors for giving me more business! But my lovely wife had been through the same process you described in the All In Your Head syndrome. For the most part, I think this is physician-speak for “I have no idea what your physical malady is and I’m too busy herding patients through my office to actually do additional reading or research that would help us get to the bottom of this. Here’s a referral to someone who has time to listen. Personally, I don’t.”
    Now, to be sure, somatic illnesses DO exist. But it sounds like your doctors have had a “reasonable out” by citing your depression history and making the referral when they are over their head with your presenting symptoms. There is a time and a place for a good therapist but “It’s all in your head” seems to be an overused mantra for “Frankly. I don’t know what I’m doing.”. So sorry that you and my wife, and countless others have been victimized by this professional shell game.

  7. Dr. Dan Carpenter at 10:44 am

    Mona….please say more about single payer health care. I need to know what I’m talking about in order to prepare to talk to representatives. Thanks!

  8. Jean Price at 10:05 am

    Oh, Judi…I am so very sorry you have been through all of this and had such abusive treatment. There’s no excuse for that, ever. Yet it seems to be more the norm and it’s heartbreaking. I pray you will find the strength to go on and be with your daughter. Our children and grandchildren can be good reasons to endure. Please keep your sense of worth…your belief in the truth of your situation… regardless of those who are trying to undermine it. Most of that comes from their inability to offer anything to help and their lack of compassion. Yet, sometimes it’s all we have left at the end of the day, our belief in ourselves! Blessings, sweet lady.

  9. Judi at 12:18 am

    Hi my name is judi after reading your story i thought thats very brave of you, because i to have rsd full body. It has spread to my vocal cords causing vocal cord dysfuntion cause me to have an emergency tracheatomy that was a year ago in nov. I will have it the rest of my life. My follow up appts. With a vocal cord specialist looked at me and said this is all in your head you just need to see a therapist. I asked why then do i have this tube sticking out of my neck. Because before they do a surgery like this thetes alot of testing done alot of doctors examing you because they don’t put a trachea in unless they know for sure you need one. But this Dr. Still says after looking into my history he saw there was depression so thats what was causing my vocal cords to dysfunction. After that appt. I lost all faith in the medical system. My pulmonary dr. Has been the only one who stands behind me. She has never heard of rsd so she went and did alot of research to learn about it. She has sent out referrals to see rsd specialist s which came back denied. The rsd has spread to my bladder, stomach, kidneys, and has caused life threating illnesses that are not being treated. I have been stepped on to many times that i stopped going to the drs just to be told its in your head or you cant be in that much pain even though you can see how swollen my hands and legs are, the color change, i have had a stroke im losing my sight, im in contant pain id rather be dead. I have a 23 year old daughter who live with me and i try to keep alot from her. She knows she might loose me, she tries to stay positive. Its only been her and i all her life. She over heard me talking to my sister telling her i can’t go on like this anymore. What could i say to her. I have to know she is going to be okay and i think thats the only thing thats is keeping me going. Even though im pretty much bed ridden. No body should have to suffer because either drs arent giving you the care you need, or referrals being denied not getting the meds you need. I always say that the drs need to live in our shoes for a week then maybe they would treat us they we should be treated and also fight for us. The drs should be required to go to conferences that are held about rsd, they need to be educated and should be required to be. I hope you get what you need and my prayers will be with you.

  10. Mona Twocats-Romero at 10:39 pm

    I have one thing to say about these games being played by Health Insurance Companies that are making billions of dollars in profit and treat their patients like animals — single payer health-care. It works well in every other country in the developed world and cuts out the health insurance companies altogether. There have been countless studies showing that these systems work better, cost much less, and have better patient outcomes with less wait times than we have in the USA. Start talking to your legislators about that!

  11. Ann Lewis at 5:21 pm

    BCBS has denied RX for my daughter’s rare disease saying it falls outside the standard of care. For her problem, there is NO STANDARD OF CARE. Some Catch-22 isn’t it? One of her meds is a pain medication that allows her to work and pay for her required insurance premiums that don’t cover her care. If she were indigent, an illegal immigrant, this would be covered.

  12. Kerry at 8:53 am

    United Healthcare bragged a couple weeks ago they made a 64 billion dollar profit.

  13. Jean Price at 11:13 pm

    Cynthia…you are so right…it’s just utter madnessI Part D has enough problems without all the different companies using various ways of denying coverage. I’m so sorry you have come up against this craziness. It’s difficult to even use energy for daily living activities when you’re in pain, but this is unnecessary and adds to the stresses. Will pray you have a swift resolution and get what you need, and deserve.. These are the times I try to remind myself that God is bigger than insurance companies…but it gets harder when the battles with them stack up. I switched Part D plans (companies) this year because my old plan quit covering several meds. I intentionally picked a new plan that would cover them all, even though the monthly premium was about three times as much. I figured the lower cost of the meds being covered would be well worth it in a year’s time. Well, here it is February and I’ve already received four letters on four different meds saying they aren’t covered now!! How can they change during the year when we can’t?! So my doctors are appealing and I’m faced with the extra expense if I can’t get them covered. Or not taking them, which will be disastrous! Sometimes they bump up a tier when it’s had special approval too! So it costs more. One of the nurses at my doctors office said to check to see if their formulary excluded both generic and brand of the medication. Oddly enough, she said some companies were covering brand but not generic on some meds! I knew some did the reverse….covered generic but not brand….but I wasn’t aware they do just the brand sometimes.. It didn’t make much sense and she said there was no real reason she knew of…except the money issue of course. You’d think they wouldn’t approve brand if they wouldn’t cover generic, but she said some companies are doing just that. Of course higher cost/copays for brand may be the real issue. The insurance representative I talked with couldn’t answer the question, so I have to call some one else next week. He did say to ask how to get a “tier reduction” and see if it was possible to get that as a “courtesy” discount!! A never had heard of this either. Live and learn, I guess. Most of us are “board certified” regarding insurance issues just from having to deal with them constantly!! To bad it doesn’t really help much.

  14. Tamme at 9:21 pm

    I feel your pain Cynthia… I have CRPS also. Your story is my story. It makes me so mad what these insurance companies do. You think they are there to help you, then the one time I call them for help, they refused me as well. I’ll never call them again. They are horrible horrible people. It’s all about the money. Take care and I hope you feel better soon. You deserve better!

  15. Dr. Dan Carpenter at 4:32 pm

    Cynthia, dear Cynthia…
    I am speechless after hearing this horrible story of your very real needs being ignored by “the best healthcare system in the world”. I think the reason I hurt for you so much is that your story reminds me of the MANY times my disabled wife has been forced to play these ridiculous insurance ” games” when, like you, we knew full well what would work but it wasn’t on the all important, idolized formulary. I will indeed pray for you and note that some of the ideas already mentioned appear to have merit. I also wonder, if it hasn’t been mentioned, about contacting the drug company directly for some help. We recently did that for my wife and they gave us an amazing discount! It may ring empty but, be well, dear friend, and know that your touching post resonates with us in the pain community and helps us mobilize.

  16. Jean Price at 4:12 pm

    Wayne…in reading your comment, I’m wondering how you keep going. Yet I am so very glad you are! You must be a very strong person and we are blessed by your words, as painful as it is to see the devastation caused to your family by a broken system and uncaring people who refuse to be part of the true solution. As a police officer, I sure you saw the abuse factors time and again. And as a person with health issues and pain, you and your stepdaughter were abused and abandoned by this system that thinks they have the answer…as senseless as it is. I hope to honor her you can continue to speak out as we all are to bring some more appropriate chronic pain care to all who have daily, life limiting pain. Please know you are in our prayers and our hearts, and your loss is touching each of us. I’m so sorry this has touched your life in such a horrible way, it’s not fair and it’s beyond any understanding of humane treatment. Please be generous to yourself, you’ve gone through so much and continue to be in pain. Don’t stop believing in yourself.

  17. Wayne S. Swanson II at 2:48 pm

    Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed without pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on you! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to new heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to outlaw Opiates and pain meds that give us some sort of a life. As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this bullsh*t movement to outlaw opiates! Just like the slaughter of children at Sandy Hook if there would have just been gun laws, my God they were Gun Laws, the guns that murdered all those 20 children were all registered and owned by a school teacher! You fight Drug Addiction in Elementary education by teaching all children the dangers of Booze and Tobacco which if these witch hunters want for us to know the real truth but they do not. I miss my Stepdaughter a so much and some of us will continue on the fight to protect our right to feel better and function without fear of these witch hunters trying to convince us to commit suicide. And they are trying to do exactly THAT!
    The underlying real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it (ALCOHOL) knowing it’s a more deadly drug than Strychnine. And just because the DEA has miserably failed with their bullsh*t war on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.

  18. Ed Stines at 2:16 pm

    Cynthia,

    So very sorry to hear of your predicament and I can only empathize with you as a fellow CRPS warrior. I have had some real crazy medical situations over the past three years which saw me with 4 major surgeries, 3 on the same leg and umpteen nerve blocks. I am on medicare and also United Healthcare through AARP. I use Humana for my prescriptions for the most part, I have never really had a problem. Last year when I reached the ‘donut hole’, one of my Rx tripled in cost without any explanation and so I told my doctor who contacted Humana and they issued me an exception and refund. You may want to investigate other providers in order to get continuation of your meds.

    Having CRPS by itself, is a total hell to deal with without having your meds discontinued and resulting in flares. I sincerely hope you get it resolved and if there’s anything I can do to help, please ask. I am also a member of a couple support groups with some influence.

    Go luck and low pain days to you.

  19. Lisa Matelski - Holland at 1:27 pm

    Cynthia,

    I, too, have UHC and have experienced similar situations. They’ve not been as big of a deal, however.

    I’m outraged, horrid, and disgusted by your story. I’m forwarding your story to CA legislators myself and the White House, even though I live in OH. If there’s anything else I can do to support you, don’t hesitate to contact me.

    This despicable treatment of patients by greedy healthcare companies has got to stop immediately. Thank you for sharing your story. Good luck.

    Lisa

  20. Elizabeth Harris at 11:21 am

    Let us know if there is anything we can do to help. Letters, petition, etc

  21. M.C. at 9:59 am

    Along with the other suggestions offered you may want to consider writing a petition on Change.org
    I have seen several of late concerning medication denials with insurance companies. They have all had a lot of signatures & the results that I have been updated on have proved to be beneficial.
    Good luck to you Cynthia. I too have CRPS. It is certainly no fun & I can’t imagine not being able to speak & more pain from something else on top of it. CRPS is enough to deal with in & of itself.
    Regards M.C.

  22. Dave at 6:27 am

    We are all pawns in the game of health care. We are subject to forces, institutions, professionals, and a government that is playing games with us and not taking our needs seriously. We have a shadowy existence in this theater of the absurd pain care system.
    While I understand why others believe that the bigshots should be more caring, dependable, better educated- they don’t seem to be willing to accommodate our wishes. They see things quite differently then others; they are a world apart from the needs of people in pain.
    An alternative to calling for better institutions and better professionals for pain care- is to call for more direct access to resources to address pain- without interference from government, professionals, etc. Our dependence on professionals has created a terrible problem for our system of care is out of control and those who need the most control of their care- have so little control. By calling for more control for people in pain then we may reverse the epidemic of poor pain care.

  23. Tracie at 6:27 am

    I am so sorry. I will be praying for this to change. God bless. Here’s a hug.

  24. Richard A. Lawhern, Ph.D. at 6:17 am

    Cynthia, if you have been denied coverage by the Insurance company, then I believe they must tell you if you ask, the qualifications of the member on staff who has signed off on the denial. If that person is *not* a board certified medical doctor in the specialty of medicine which addresses your diagnosis, then you may have grounds for suing the socks off these negligent idiots. Contact a lawyer about filing a restraining order against the company and its member of staff, on grounds of medical malpractice. The first 45 minutes lawyer consult is generally free, though you will need to talk to someone who specializes in this branch of law.

  25. Doc Anonymous at 5:42 am

    It is frustrating and infuriating to see how the insurance workers decide actual medical treatment with no medical degree and without ever talking to or examining the patient!

    I wish I had some words of wisdom or ways to solve the “problem”. But I do not. I dealt with this issue numerous times in my career, always trying to get the prescribed medications approved. It took hours of time by staff and myself to try to overcome these arbitrary denials by the insurance companies.

    Part D insurers were especially obtuse and seemed to change their prerequisites at any whim and with no warning. To make matters worse there are often “Pharmacy Benefits Management” Companies that often do the front line dirty work of denial of payment for the insurers. That way the insurance company can deny that they were the actual denier of payment. It is a cloudy, seemingly back room operation that defies any scrutiny, ublic or otherwise.

    I sometimes had to get authorization for non-formulary antacid. But I must admit that it is an eye opener to see how a combination of significant reflux and CRPS can be so devastating. There is undoubtedly some avenue for the insurance company to make an exception. Since it is a Medicare Part D carrier, you probably cannot sue the carrier. But they do require a medical director and the medical director and pharmacy director can be reported to the appropriate state medical board. I would strongly recommend that.

    This denial seems to clearly violate your Americans with Disability Act rights: namely to be able to achieve maximal participation in life’s activities. An ADA complaint would also be warranted. Good luck.