timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Someone asked me to e-mail them my appeal letter to my insurance company. Because of lyme brain, I can't find either their post or their e-mail address.
Here is my first letter. Make sure you attach whatever articles you send, with the info underlined. Address each point that they are denying. Make copies of everything that you send to your insurance company and send it FedEx so someone signs for it on the other end.
I should mention that the CDC website did change since the writing of this letter; so the information may not be quite the same on that site now.
My insurance did authorize the IV treatment, but the battle continues to be ongoing....don't ever give up or give in. That is what they are hoping you will do. So far, they are continuing to pay, and I've been on IVs for 5 months.
Good luck....
Date
Dear Insurance Company,
This is a reply to your letter dated ******* stating that you would not certify the home IV antibiotic therapy because it is ``experimental and investigational.''
To refute your statement:
You state that diagnosis for Lyme disease requires:
(1) Clinical findings consistent with Lyme disease. I have that. Dr. F's report and Dr. L's letter both state that I have clinical manifestations of Lyme Disease. (Report and letter attached).
(2) History of exposure in an endemic area. I was in New York in the woods camping at a cabin when in elementary school. I was also in the Santa Cruz area camping and in Pennsylvania as noted in Dr. F's report on me. I lived in the Pacific NW for a number of years. I am an outdoors person who enjoys hiking, camping, backpacking and gardening. I live in a wooded area (******) which has many deer, and in which 2 people were just diagnosed with lyme this month, having never left town. Lyme is in ******** too!
(3) You state it is necessary to have either an EM or a positive ELISA and Western Blot. According to the CDC (see attached paper--with the statements underlined) ``The diagnosis of lyme disease is based primarily on clinical findings, .....Serologic testing may, however, provide valuable supportive diagnostic information in patients with endemic exposure and objective clinical finds that suggest later stage disseminated Lyme disease.''
Please note the following quote from Columbia University Medical Center's Lyme Evaluation Center's website (the entire answer is provided with this letter) ``Is it possible to have negative western blot testing and have lyme? Yes, it is possible to have a negative Western blot and have Lyme Disease.....from 22% - 57% of the time the Western blot would not come back positive in a serum sample from a patient with active Lyme Disease.''
In my case, I have tested positive on two bands that are highly specific for the lyme bacteria. Band 34 and band 39 (see attached labs). ``Band 39 is found in 81% of LD patients and 1.3% of controls. 31 and 34 are found in 25 and 27% of LD and 7 and 8% of controls.'' Serodiagnosis of Lyme Borreliosis by Western Immunoblot: Reactivity of Various Significant Antibodies against Borrelia burgdorferi. Bingnan MA, et al. Jour of Clin Microbiology, Feb 1992 p. 370-376
Dr. F also noted in his report on me that I had tested positive on March 3, 2005 on IgM bands 30, 39, 45, 58 66 and 93 and 4 of the 5 CDC bands on IgG (30, 41, 45, 58). He stated that this was significant. (see attached report)
Regarding the EM rash....''A characteristic red bulls-eye rash (EM) at the site of the bite is present in less than 40% of patients.'' (article attached). Not having an EM rash certainly doesn't rule out having lyme!
I also had a Brain SPECT scan done at Columbia which shows ``moderate, global, cortical hypoperfusion with heterogeneity consistent with .....lyme.'' (results attached).
According to the CDC, the diagnosis of lyme is ``based primarily on clinical findings.'' I have two doctors stating that Lyme disease is the most likely cause of my symptoms, based not only on my clinical findings but also because of my supporting laboratory data.
You may not be aware that in 2002, Public Law 107-116 was signed into law by President Bush (see attached). The language of this law specifically states that Lyme Disease is a clinical diagnosis and the CDC surveillance criteria cannot be misused by insurance companies or others to deny medical treatment to patients in need. It also states that the current state of laboratory testing for Lyme disease is very poor; and that 36% of people with confirmed Lyme disease did not test positive on the most sophisticated tests. Clearly your denial of treatment for me based on your requirement of what you consider a positive lab test goes against this law.
The treatment of lyme disease, according to the CDC, is as follows: (article attached and underlined for your convenience): ``later disease, particularly with objective neurologic manifestations, may require treatment with intravenous ceftriaxone or penicillin for 4 weeks or more, depending on disease severity. In later disease, treatment failures may occur and retreatment may be necessary.''
According to Columbia's Lyme Evaluation Centers website (paper attached) ``For neurologic lyme disease, the best tested antibiotic is IV ceftriaxone.''
IV antibiotic treatment is commonly used for many bacterial infections in addition to Lyme disease, and IV antibiotics have been used in the treatment of neurologic Lyme disease for at least 20 years. Using IV antibiotics to treat lyme disease is neither experimental nor investigational.
Dr F, who did my evaluation and suggested that I have IV antibiotics for my treatment (see report) states ``the optimal treatment of neurologic lyme disease is not yet known. Intravenous antibiotic therapy with ceftriaxone or cefotaxime is the accepted standard because these drugs more effectively penetrate the blood-brain barrier. In studies of Lyme arthritis in which patients were treated with oral antibiotics, the treatment failures often showed signs of neurologic involvement, suggesting that oral antibiotics may be insufficient to eradicate infection that may already be sequestered in the CNS compartment.'' Fallon, B.A. Neurologic Lyme Disease in 12th International Scientific Conference on Lyme Disease and other Tick-borne Disorders. 1999. NY, NY.
Failure to treat neurologic Lyme with IV antibiotics with adequate CNS penetration, allows a serious neurologic infection to progress unabated.
I have TWO doctors recommending that I be treated with IV antibiotics; Dr. F and Dr. L.
Your rationale for denying me the treatment is unfounded for the reasons that I state above.
I don't believe that anyone in this country knows more about neurologic lyme than Dr. F. For him to suggest IV antibiotics for me is significant. See his website if you are unaware of who Dr. F is (www.columbia-lyme.org).
I am beginning the IV treatment for Lyme disease; as my two doctors have recommended. This is a medical decision, not an insurance decision. I will expect (name of insurance company) to reimburse me for my costs.
Thank you for your attention to this matter.
Sincerely,
Cc: Dr. F; Dr. L; Dr. B
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Thanks so for posting. It helps to have someone's organization as a start ( in case we need this at the end of the month......if denied the fourth month for my son)
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I should also mention that www.lymetimes.org has an insurance issue that you could purchase which has a wealth of info.
Also, check with your insurance carrier...they should have a process regarding appeals. First letters to them, then (at least in my case) an independent agency to appeal through (I haven't had to do this yet); then I think you can appeal to the state insurance commission...and lastly (or even before if you want) a letter from an attorney.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thank you thank you thank you!!!
Posts: 830 | From Colorado | Registered: Mar 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Bravo!
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Public Law 107-116 Signed by President Bush 1/10/02 Departments of Labor, Health, and Human Services, and Education, and Related Agencies Appropriations Act 2002 This is the wording that was passed by the Senate (11/06/01, 12/20/2001) and House (10/11/01, 12/19/01) and included as part of the final bill was signed into Public Law by President George Bush on January 10, 2002.
Centers for Disease Control and Prevention Lyme Disease
The Committee is deeply concerned about the safety of the Lyme disease vaccine (LymeRix). Over 1,000 adverse event reports were filed with the Food and Drug Administration from December 1998 to October 2000. The Committee encourages CDC to work closely with the FDA to ensure that all adverse event reports are thoroughly and expeditiously investigated to ensure public safety as the vaccine is being distributed. Investigators should pay particular attention to patients' reports of arthritis when evaluating these reports. The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available. The ramifications of this deficit in terms of unnecessary pain, suffering and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease. The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition. While the CDC does state that `this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases. The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing this definition. The Committee recommends that the CDC strongly support the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists. Voluntary and patient groups should have input into this process. Currently there is just one definition (`confirmed case') of seven possible categories. By developing other categories while leaving the current category intact, the true number of cases being diagnosed and treated will be more accurately counted, lending to improved public health planning for finding solutions to the infection. The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts. This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts National Institutes of Health - Office of the Director Lyme Disease The Committee recommends that the NIH improve its communication across Institutes in order to better coordinate Lyme disease research and outreach to public and private scientists with the goal of stimulating research interest in this field. The Committee encourages the Office of the Director to involve NIAID, NHLBI, NINDS, NEI, NIMH, and NCCAM in promising areas of research. The Committee urges NIH officials to identify appropriate NIH advisory committees for Lyme disease representation and ensure the appointment of qualified persons. The NIH is encouraged to include a broad range of scientific viewpoints in the process of planning and executing these efforts, including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates.
Social Security Administration The Committee understands that some patients with Lyme disease and other tick-borne disorders have encountered some difficulty when applying for assistance through SSA offices, due to SSA employees' unfamiliarity with these illnesses. SSA is encouraged to work on developing educational materials for SSA employees to facilitate a better understanding of the potential debilitating effects of these disorders. The Committee suggests that SSA collaborate with clinicians who have expertise on the multi-system chronic effects of Lyme, as well as patient and voluntary communities, to accomplish this goal."
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
GO TIMACA!!!
I really wanted to duke it out with Blue Cross.
My doctor wanted me on a minimum of 90 days IV Rocephin.
Blue Cross said to take a hike -- 30 days was their max.
I filed the standard appeal and got denied.
I never made it to Round Two. My liver enzymes went sky high. (And in fact aren't too great even on orals, it appears.)
So me and Rocephin sadly parted ways, though I thought even just that month was a good thing.
Your letter is just oustanding.
Site gurus, save this thread forever!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Up
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I will also mention that if you run into a dead end with your insurance carrier, and believe that you should be covered for whatever the problem is, you can contact your local state insurance commission for help.
My local state agency was EXTREMELY helpful. They could not believe the run around my insurance company was giving me.
A few letters from the state insurance commission to your insurance company can do wonders.
I haven't had any kind of problem from my insurance company since. (Knock on wood) And I was on a very expensive antiviral drug for 9 months.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
We are in the process of writing our first appeal since their refusal to pay for IV treatment. This is a wonderful letter to start with to get the ball rolling.
Glad the insurance isn't bothering you anymore and thanks for all the great tips.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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