LYMEPOLICYWONK: Lyme Patients and Insurance Appeals

17th November 2010

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Lyme disease patients have trouble with insurance coverage. They have trouble getting health insurance if they have ever had Lyme disease, on the one hand. On the other hand, they have trouble getting the disease treated because insurers rely on the IDSA guidelines to take a "free pass" on treatment reimbursements. This is an area that is clearly governed by something other than providing quality health care to patients. Have you ever wondered what happens--really happens--when Lyme patient appeal an insurance denial? What happens is we succeed 9% of the time, while other diseases succeed 40% of the time. What is going on here? How can that be?

I looked into this in depth in California and wrote many, many, (too many) letters to the California Department of Managed Health Care.  Then I called them and tried to talk with human beings and reason with them.  I said, “look, Lyme patients are being systematically discriminated against–you have a systemic bias in your system that causes us to lose these appeals.  Tell me what can we do.  Can I educate the reviewers that there are two standards of care?”  The answer, ultimately, after many, many, (too many) conversations was that the reviews were sent to “independent review organizations” (IROs).  IROs spend their days doing claims appeal work for insurance companies and their nighttimes reviewing appeals by patients.  How do you think the process goes?  Well, they reach into their IDSA guidelines folder, which they used during the day, and pull out the IDSA guidelines and apply them.  It does not matter that there are two standards of care to IROs.  They’re just doing their job.  And, if you want to educate these folks regarding two standards of care.  Forget it.  As far as the CDMHC cares, your appeal goes into a black box that cannot be educated, advised, informed, or intervened with.

So what do I tell patients to do?  I tell them to file the appeals.  Let’s get the stats.  When I gave my presentation before the IDSA review panel, I told them about the disparity.  I had the stats.  The chair asked “is that just California”–as though California was not a state that mattered much in the scheme of things.  I said, “it is just California that I looked at, but I would be surprised it this varies state to state. Independent Review Organizations operate nationwide.”

Here is the challenge.  Find out where you file appeals for an independent review in your state when insurance denies a claim. (Almost all states have this process.)  Find out if they have a data base.  See if you can search for all cases appealed and how many succeeded. Then do a search for how many Lyme case appeals were filed and how many succeeded.  Report back.  I want to know.  Send me you results to my email address below.

 

You can follow additional comments on Lyme policy at www.lymepolicywonk.org.  You can contact Lorraine Johnson, JD, MBA at lbjohnson@lymedisease.org.

Related posts:

  1. LYMEPOLICYWONK: RELATIVE WEIGHT–Specialty Societies vs Patients, AKA no contest
  2. LYMEPOLICYWONK: Uncle Sam Needs Patients to Get Healthcare Reform Right
  3. LYMEPOLICYWONK: LYME IS PART OF A MUCH BROADER DEBATE ABOUT THE ROLE OF PATIENTS IN HEALTHCARE
  4. LYMEPOLICYWONK: IDSA Hearings Delay has Lyme Patients on Tenterhooks
  5. TOUCHED BY LYME: Those controlled studies cited by the IDSA Lyme guidelines included only 221 patients
Comments

23 thoughts on “LYMEPOLICYWONK: Lyme Patients and Insurance Appeals

  1. Thank you for your efforts.

    Eventually, history will not be kind to those who denied this disease and Lyme and other autoimmune patients will be properly cared for.

    I'm sure you are paving the road to that future.

  2. Thanks for your efforts. I hope people continue to appeal, even though it can be hard and disheartening. I filed an appeal and an IMR in 2007. I had spinal fluid + for Lyme antibodies, three CDC + Western blots on IgM and IgG, and a SPECT that was consistent with encephalopathy. All 6 reviewers denied my appeals, saying I had no evidence of active Lyme. I don't think they even read my file since their opinion didn't mention any of the evidence I submitted and stated the exact opposite of the items I did submit. Thank you for letting me tell my story. It helps. I hope Lyme patients and their families continue to fight for care. It is hard, by may be that's exactly why we should do it.

  3. Great post and consistent with my experience of the appeal process through DMHC. DMHC cover themselves by contracting out the review process for appeals. They can then say when pressed about the biased process of LD appeals that they are just following process and that a third party decision cannot be appealed. So, it comes down to what the specifications of the contract say that DMHC provides and that a contractor bids on to provide service.

    After a LD appeal I submitted was denied I decided to make a public records act (PRA) request to look at the contracting process. I was put in touch with an attorney to work with and received a CD of documents. What appears to me was that the same company has had the contract for multiple years and that the contract had been extended over and over as a sole source contractor. Governments always are suppose to use the three bid process unless they can justify the need to use a sole source contract. I cannot believe there is not another company who can provide the same service. As a sole source contractor with extensions I assume the specification have not change either.

    If DMHC could be made to bid the contract again in a competitive manner then the specification would need to be and should be written to reflect that there are two standards of care to refer to. Also, there should be language to reflect that new peer-reviewed science is coming out all the time to refer to as well. We know that there is over 1,000 pages of new science to date.

    The saying if you continue to do what you always do you will continue to get what you always get is very true in the case. Review specifications NEED to change to reflect todays reality!

  4. Great post and consistent with my experience of the appeal process through DMHC. DMHC cover themselves by contracting out the review process for appeals. They can then say when pressed about the biased process of LD appeals that they are just following process and that a third party decision cannot be appealed. So, it comes down to what the specifications of the contract say that DMHC provides and that a contractor bids on to provide service.

    After a LD appeal I submitted was denied I decided to make a public records act (PRA) request to look at the contracting process. I was put in touch with an attorney to work with and received a CD of documents. What appears to me was that the same company has had the contract for multiple years and that the contract had been extended over and over as a sole source contractor. Governments always are suppose to use the three bid process unless they can justify the need to use a sole source contract. I cannot believe there is not another company who can provide the same service. As a sole source contractor with extensions I assume the specification have not change either.

    If DMHC could be made to bid the contract again in a competitive manner then the specification would need to be and should be written to reflect that there are two standards of care to refer to. Also, there should be language to reflect that new peer-reviewed science is coming out all the time to refer to as well. We know that there is over 1,000 pages of new science to date.

    The saying if you continue to do what you always do you will continue to get what you always get is very true in the case. Review specifications NEED to change to reflect todays reality!

  5. My insurance approved treatment of IV Rocephin up to November 4th. Then they decided I had lyme (no where does my file indicate lyme that I know of). They then decided to retoractively deny my infusion coverage all the way back to Sept 4th. They denied 20 nursing visits & 183 doses of Rocephin. Each dose is $95 for their "cash price". That's over $17,385k. I have no idea how much I am going to have to pay for the nursing visits. I'm guessing @ $200 a visit (just a guess) that's $4k. I am disabled & have been denied disability twice. My insurance is Anthem Blue Cross. How can they approve something and then take it back? I have no way to pay for this. I had to borrow the money to pay for my cash infusions. This is a nightmare.

    • Yes the same thing happen to me, they approved the procedure and than denied it on day 20. The insurance was Horizon Blue Cross Blue Shield, on top of that the physician who was treating me canceled subsequent appointment leaving me with a PICC line in my body. I am in the health care field and have been fighting the matter. I hope some day soon the discrimination will stop. I do have tests which shows I am positive for Lyme but the insurance based the denial on CDC guideline to escape payment rather than the FDA approved lab tests.

  6. I have just received a denial from Anthem Blue Cross and Blue Shield for everyone in my family with lyme disease. Aon Hewitt is the company that is going to look over the denial by Anthem. The company that has this insurance is the Manitowoc company in Manitowic, Wisconsin. Wisconsin is State with an increasing number of lyme patients. I think we should publish the names of the companies and Anthem so that we can then know which companies have opted for such a corrupt insurance company. Another woman here in Florida is on disability from Verizon and she has been denied treatment for lyme disease from Anthem Blue Cross and Blue Shield as well. Spread the work around about how these companies and Anthem and some other insurance companies are behaving. Prior to Anthem we had Meritain Health and the Private Health Care Systems network and they figured out it was lyme and were paying for much needed treatment and that was under Enodis. As soon as the company was purchased by Manitowoc they switched everyone to Anthem. I have just heard Anthem paid $500,000 for a man's lung transplant but they are busy denying treatment for lyme disease. It is all about money. May these malevolent people get lyme. Let's start publishing names of the companies who will pay for treatment and those that will not and spread the word around. I am disgusted with the way Borrelia and co-infections or lyme or tick borne illnesses are being ignored by this country and others around the world. We need to put an end to this corruption and disband the damn IDSA !

  7. I don't think that anything will change until these companies are sued. A class action suit by all the lyme patients denied might be the way to go. There is a disability insurance company that systematically denied paying when their clients were disabled by chronic fatigue syndrome. They were sued for millions and lost. Now they cover those people.

    • Public awareness and money…. unfortunately I think it’s the only way to move forward. Why can’t all the Chronic Lyme patients band together to do a massive law suit?

  8. Forget suing the insurance companies, I say sue the Department of Defense and the U.S. Army. I now have documentation from as recently as 2007 that says they are indeed using lyme as a bio-weapon!

    Forget the conspiracy theorists….This goes even deeper than they could even imagine. I am presently (in between Herxing my guts out!) in contact with an attorney that although, we know it would never, ever, reach court, but once if we get the Petition up and we reach a certain amount of signatures, he's willing to file for the hell of it just so we (and I'm sure him and his law-firm too! lol's)can get the attention this needs.

    I have three different patent numbers alone from the U.S. army on just the mycoplasma's that were put into the tick, I have documentation of a few of the other co-infections too. I'm awaiting further documentation that could make WaterGate look like a kindergarten class compared to what these people have done.

    Unfortunately, there are several executive orders that ALLOW them to not only do this, but to also test this on the unknowing public! Are you kidding me? This is OUR government? (Think Under The Eighball, the movie.) I got sick to my stomach when contacted by an old journalist friend of mine with all this stuff. There are literally thousands of pages to wade through and they’re all horrid. The hard part is going to be which ones to choose.

    Wait. Their time is coming and sooner than they think. I hope everyone here will sign the Class Action Suit Petition. I will try to have it up this week—depending on receipt of documentation, proper wording of the petition, and Herxing.

    They denied AIDS, they denied Fibromyalgia, CFS, The Gulf-War Syndrome, and our own heroes from 9/11 that got sick. Enough is enough! We cannot wait another 10 or 20 years.

    We NEED to be the Sara Parks, the Karen Silkwood’s, and the Erin Brockovich's of 2010….we will no longer be content to sit quietly and ride at the back of the bus. It is time to make some noise—-too many of us our dying, losing our homes, our life's savings, and our sanity over this. 2.2 million People a year getting infected and not ONE outcry?

    Well, if I have it my way….not any more. This year, with everyone’s help, our cries will not fall on deaf ears because the noise we make will be deafening!

  9. Class action suit is a good idea. Also, an award-winning screen play to help educate the public about the realities and the multipronged impact on the lives of Lyme patients and their families. It would also be good to show the tragedy of stigma and discimination in public social systems that keep such unethical human behavior locked into place. The Attorney General has made a statement: Mental Health: A Report of the Surgeon General (http://www.surgeongeneral.gov/library/mentalhealth/toc.html) and its Executive Summary (http://www.surgeongeneral.gov/library/mentalhealth/summary.html) where stigma is discussed as a major reason for access to services and a call for correction in public policies and delivery of mental healthcare. Where is the same for Lyme sufferers?

  10. I have BCBS Anthem which is based out of NY state(my policy anyway). I was told by a nurse care manager in appeals that "it doesn't matter what my state said(FL where I reside 100%)BCBS Anthem goes by NY state guildlines,and as of right now NY state will not help you" An outside appeal was done and my neurologist demanded to speak with the appeal doctor. He finally got a number to reach him at and told him(appeal dr who is also an neuro) without IV ABX I would continue to worsen. The appeal Dr said even if he said I needed them,IDSA guidlines are followed to the letter and I was denied again. The appeal Dr's just say "according to IDSA guidline…." DENIED!

  11. Another insurance issue re: Lyme disease is described in this article, "What To Do When Doctors Disagree"
    http://compensation.blr.com/Compensation-news/Benefits-Leave/ERISA/What-to-Do-When-Doctors-Disagree-/

    A Rhode Island credit union manager complained to her doctors about work-related stress, which was overwhelming her. Her psychiatrist diagnosed her with major depressive disorder, with which she had been troubled 12 years earlier. He classified her as having “marked limitations,” and she applied for long-term disability benefits under the credit union’s plan. But the plan had limitations, too.

  12. I live in RI.
    I have had Chronic Lyme for 13yrs now. I was diagnoised 3 yrs to late. I had lost my memory and was bed ridden for 2 year. I fought with BCBS for 2 years for treatment but kept getting denied. They said I didn't need 3 months of IV and that the 2 weeks worth of IV treatment should have been good enough. I ended up going to a site called NEEDYMEDS.COM I was able to get my med for free but had to pay out of pocket for supplies and nurse. After that, every winter I went on 3 months of IV treatment, paid by the insurance, for 5 years. I was able to go 3 winters with no treatment, but its back again full force and the dr wants me on 6 months of IV treatment now. I am so afraid of going through everything I did before just to get well. Between letters to the Health Dept, the Governor, Congress. Everyone I could think of, I am not sure I could handle that kind of stress again. And on top of it, I had caught BABiosis. And I have fibromyalgia

  13. My COBRA ins. (monthly premium of $560 mo.) – denied my ILADS) Specialist and neurologist's orders for (IV) Vancomycin, then further, (IV) Ceftriaxone for life-threatening Borreliosis bacterial encephalitis, complicated by Bartonella and Babesia w/ disseminated infection.

    I ended up in ER's w/ crippling drill-like head pain=pressure, blurred-double vision, chest pain, SOB, oxygen starved, altitude sickness, increased pulse, BP, profuse day/night sweating, nausea, severe arm pain w/ alternating numbness, severe weakness, exhaustion, feelings of doom and fear for my life – I felt like my body was shutting down and I was going to die while ER physicians when I told them I am a (RN) with a significant history of Centers for Disease Control (CDC)-confirmed Borrelia and co-infections, they would get nervous and send me home w/out a brain scan or collaborating with my non-ER choice of physicians.

    Without my (ILADS) Specialists, I think I would have died.

    Causing further disability and unemployment, costing taxpayers, and Cobra ins. more (ILADS) visits, lab, oral antibiotics, physical therapy, mental health and massage therapy for crippling pain and suffering.
    There's needs to be a class action lawsuit against insurance companies for for unlawful-discrimination(injury), Abusive Harassment (humiliation, intimidation, coercion, threats and manipulation) and Retaliation (physical, emotional, psychological and financial harm) under (ADA) federal law.

  14. There needs to be a class action lawsuit filed against the IDSA. Those attorneys with chronic lyme could be in a great position to help as there is little funding for this type of thing, but there is a lot of victims of chronic lyme, and this could be the thing that defeats the idiocy of the IDSA. Any ideas out there?

    • It is not in the interest of the pharmaceutical companies, there is no drug out there which could be of real profit for the pharma industry, so the health care industry does not really care. They are heavy lobbyist for politicians who don’t care either.

  15. I was able to get a few appeals approved with blue cross blue shield FEP of Alaska by doing this- In my appeal letter I stated my ILADS LLMD was the only lyme specialist in my area. They sent a letter back from their reseach analysist saying approved and they said there was so and so other doctor that treats lyme, but he couldn’t possible see the whole area population.

    I was able to appeal the Igenex lab tests for lyme and co infection panel for $400+ and $600 and got about half of that back. Also my ILADS LLMD was non-preferred and a few days ago I found out you can file a basic option exception to get a non-preferred switched to a preferred provider for a 3 month period of time. It was appoved within a week and now I won’t have to file appeals for office visits which are $225 each. I will need to renew the exception after the 3 months and they require that you already have an appointment at least 3 days away and no more than 30 days when you file this with BCBS.

  16. I am a young adult who has been denied twice already. I’ve had my life ripped away from me and now have the rest of my days to look forward to living with my parents, without a dollar to my name, and ruining my parent’s golden years while they watch me suffer. Denying me disability took away the last shred of independence I had been hoping for and came on the heels of a respected physician’s prognosis that I likely have permanent nerve damage that will keep me this state of being unable to do anything other than lay in bed indoors, forever. I can’t express what this has done to me and how sad I am. Having Lyme Disease leaves you a victim of constant gaslighting and forces you to live in a country within a world where your government and medical system considers and treats you as though you are less than human. I lost the opportunity to finish college, to live my life, to have or care for any children I might have, and the quality of my future is gone. It’s as though I’ve died while still alive. Anyone who does something like this to another human being without remorse or willingness to honor the human over the dollar, has no heart, and will answer to nothing other than threat to the dollar by way of a massive class action suit.

    I wish someone would make that happen.

  17. I have chronic Lyme (13 yrs) that I contracted in AR and diagnosed two years ago, treated with oral antibiotics and was not making much progress with the neurological symptoms, could not break the blood brain barrier. I decided to go with IV therapy, had a PICCLine inserted to my heart. I only received 3 weeks therapy and then my DR was required to submit more paperwork, I was on hold for one week and then received only one more week therapy and left with my PICC line in me while five appeals and several months passed by with denial after denial. I appreciate you bringing attention to this and I will do my homework and check AR database for others denied.

  18. I to have Lyme I contracted it in arkansas 10 yrs ago. Go to my FB page I have posted info the state had in 1995 about Lyme disease risk on LRAFB by the army. We need to have a class action lawsuit against the State of Arkansas for not making theses findings public.

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