This letter is dedicated with thanks to Timaca. I hope it helps some of you in the future. I wonder how they will react.
September 1, 2006
Insurance Co. Appeals Dept.
Dear Ins. ,
This is a reply to your call dated August 31 stating that you would not certify the home IV antibiotic therapy. I want to appeal your decision, both for myself and my daughter.
We believe we were both bitten when we lived back east in New Jersey. We often hiked in the Berkshires and upstate New York. I had the meningitis and flu, she did not, and we were not diagnosed until April, 2005 after years of illness and suffering. We never saw tick bites, as far as we know, but even CDC research shows that up to 50% of people bitten never see a bite.
My daughter lost all of her abilities to read, write, think, walk, and swallow when she was 11. She was diagnosed with a neurodegenerative disorder of unknown origin. We now know this was Lyme Disease, which for her invaded her central nervous system and has rooted in her brain, causing severe neurocognitive, neurological, neuropsychiatric, and intractable pain issues. She is on permanent SSI.
I am a psychologist who had to stop working 2 years ago, also on permanent disability, because of Lyme. I also have intractable pain and neurocognitive problems, which are beginning to clear because of the rocephin.
I hope you have not denied this medication to us because you do not believe we have Lyme. Remember, Lyme is a clinical diagnosis, there is no definitive test for it. I have a positive western blot, my daughter has an equivocal one. But two doctors, have diagnosed us with Chronic, late stage lyme.
You may not be aware that in 2002, Public Law 107-116 was signed into law by President Bush. 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.
The treatment of lyme disease, according to the CDC, is as follows: ``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.'' Both my daughter and I have documented evidence of neurologic manifestations.
According to Columbia's Lyme Evaluation Centers website ``For neurologic lyme disease, the best tested antibiotic is IV ceftriaxone.'' Both my daughter and I have plateaud after a year of oral antibiotics. They helped, but not enough.
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. My daughter cannot tolerate the oral antibiotics. She vomits them, and has developed wasting away syndrome as a result of Lyme.
Dr Fallon, 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.
For research data that is NOT experimental but shows results in a highly controlled research study, please consult Dr. Fallon's work: (www.columbia-lyme.org).
We have begun the IV treatment for Lyme disease; as Dr. X has recommended. Dr. Y also supports this treatment. This is a medical decision, not an insurance decision. I expect (Insurance Co.) to fund this treatment. Since this appeal may take time, I am going ahead with it, paying out of pocket, and expect to be reimbursed.
I have a recommendation for a win-win situation, if cost is the major factor. My plan has as our mail-in pharmacy provider. They will provide 90 days powder rocephin for a little more than $1200. That's about $14 a day - as opposed to the $136 the current pharmacy, f, is charging. However, we need the home health company to stay involved, to show us how to mix the powdered rocephin, to monitor my daughter daily (she has been with hospice TWICE - she is very fragile), and to help change our dressings.
I also think you may not have received all the proper medical records to make your determination. I have copies of most of them. I will send them separately. Have you used due diligence is asking for all these records? I do not know what you want from me. Your letters have said there is nothing for me to do. I feel that I am being discriminated against because you want me to function like a normal person, when I am severely impaired, fatigued, in pain, mentally confused and overwhelmed with this illness. My daughter cannot even remember something that was said to her two minutes ago. I have had to ask a friend to help me write this letter.
This feels like a cruel or uninformed decision on your part, which may result in the death of me and my daughter, and / or a worsening of neuropsychiatric, neurological and neurocognitive problems, and continued intractable pain. These will potentially be very expensive to treat for (Insurance Co.) down the line. I do not think you have studied the latest research on chronic lyme and it's treatment, as seen in Fallon's work and the work done by ILADS.
If this appeal is turned down, I would like to know why, in writing. Even before then I would like a letter in writing telling me how to contact my state board that oversees health insurance companies. I am feeling I may also need to contact an attorney. I am catastrophically ill and it is difficult, if not impossible, to do all the work needed to advocate for myself and my daughter in this surreal situation.
Thank you for your attention to this matter.
Sincerely,
cc: Dr. Dr. Sate of California, State Insurance Commission
[ 02. September 2006, 02:45 AM: Message edited by: JeffM ]
Posted by Lymetoo (Member # 743) on :
Wow, Jeff. That was an awesome letter. I'm so sorry that you and your daughter are suffering so.
Keep us posted on what happens!
How old is your daughter now?
Posted by Ann-OH (Member # 2020) on :
This is a very powerful letter. I hope you get some justice.
My best thoughts and wishes for you and your daughter, Jeff.
Ann - OH
Posted by timaca (Member # 6911) on :
Jeff~ Very good letter. I would probably leave out the last paragraph about "if this appeal is turned down"
Also (you probably caught this with spell check) but State is spelled wrong at the very end of your letter (in the CC portion).
I think your plan is good...continue with the IV rocephin (and thank God you can pay for it). Expect them to reimburse you. Mine did. But it took a heck of a lot of letters.
If they deny again, appeal in a more direct way to your state insurance commission.
Perhaps DR. F's latest research will be published soon. It was supposed to come out this summer...that would be excellent support for your case.
Also, send everything to your insurance company FedEX and make a note of who signed it (you can find that info online with your tracking number)
Keep a copy of EVERYTHING that you send to you insurance company. You might as well make a separate notebook for this issue.
Good for you!!! Keep after them!
Timaca
Posted by Jill E. (Member # 9121) on :
Jeff,
This is an excellent letter. I wish you and your daughter the best.
I will print this out for future reference for myself - given that my insurance denied Bicillin, they would probably deny more than one month of Rocephin in the future.
If Timaca is reading this, thank you, too, for all your help for those of us with insurance battles. I still plan to battle the Bicillin when I can - you have been an inspiration!
Jill
Posted by lou (Member # 81) on :
In addition to the Lyme Times insurance special issue, here's something I saw on another forum that might be useful to some, although Jeff has probably not exhausted all of the internal procedures yet:
Write to every Insurance Commissioner in the states where you live, you work, your employer's headquarter is located, and where you receive your medical treatment.
Request assistance from the State & Federal Representatives where you live, you work, you own property, your employer's headquarters is located, and where you receive your medical treatment.
Include at the top of every letter...
Your name, address, home phone #, work phone #, fax #, and the best time and way to reach you Insurer's name Insurance plan administrator's name Employer's name Policy and plan number Insured's name and insurance number Name of the family member being denied coverage or experiencing insurer interference with medical care.
ERISA - Self-Insured Programs
State Insurance Departments have no authority over Self-Insured programs. Lawsuits which are initiated to force an insurance company to pay for extended Lyme disease treatment are covered by the federal ERISA (Employee Retirement Income Security Act) which governs these types of claims if the medical insurance was obtained through employment. The claimant must exhaust all appeal processes set forth in the major medical insurance company's booklet and obtain written denials from the insurance company before a lawsuit can be properly maintained against the insurance company. Documentation is key to proving your compliance. The courts have held that a failure to exhaust all administrative procedures (including the appeal process outlined in the booklet) is a proper basis for dismissing a lawsuit under ERISA.
Patients have a right to receive a written denial of their claims and appeals. If the insurance company fails to provide a written denial, a complaint should be filed with the Superintendent of Insurance in the state where the patient resides. Send all complaints with the insurance company by certified mail, return receipt requested.
Before you file a complaint
Consider whether or not you have a legitimate complaint. If your physician recommends LD-related medical care and your insurance company refuses coverage, you have a legitimate complaint.
Find others in the same situation and share information.
Find alternative treatment (usually less effective) to hold you over while you are fighting.
Write a letter to the insurer and to your employers benefit area requesting a reevaluation, clarifying the medical necessity for the care. State that the insurer (and the insurer's consultant) will be liable for any hardships and medical damage incurred due to the delay in diagnosis or treatment. Request a return receipt and ask for a response within 5 business days.
Ask for assistance from several insurance departments. Insurer's Board of Directors receive copies of insurance department complaint letters and are required to take action.
Go public! Send copies of all correspondence to local or national media. This includes the insurers original letter of denial and other correspondence.
California Department of Health Services (510) 540-2566 Division of Communicable Disease Control 2151 Berkeley Way, Room 708 Berkeley, California 94704
CA Dept. of Insurance (213) 897-8921 (800) 927-4357 (in-state only) Consumer Services Information/Complaints 300 S. Spring Street, S. Tower, Los Angeles, CA 90013
California State Library Libraries & Courts Building 914 Capitol Mall P.O. Box 2037 Sacramento, CA 95809
Posted by timaca (Member # 6911) on :
Jill~ You are welcome for the inspiration. Did I mention that my insurance is paying on ALL my bicillin now too? I'm depositing over $900 today from 25 checks from them!
Don't give up. That's what they are counting on.
Timaca
Posted by JeffM (Member # 8919) on :
Excellent advice. Thanks for the pms.
Lou and Timaca: I am not sure I have the energy to do all this. The whole thing is not just frustrating, it is overwhelming and it has made me so angry all of today. It is not good for me to walk around in a tizzy. I am so mad I could spit.
I wonder if there are secretaries or medical advocates who help with this stuff. Suddenly, it has all fallen onto me. I thought it was all taken care of. Now I expect I may be getting a huge bill from home health and the pharmacy, after they supplied the services and medication, telling me everything has been approved. The insurance co says it was never approved. F them.
Lou: I am following your route. The tumult is too much.
Posted by timaca (Member # 6911) on :
Jeff~ It is incredibly frustrating. Insurance reform is definitely needed. I'm sorry you are so frustrated and angry....I have been there, and I understand.
You said you could pay out of pocket if need be. Then you have to decide if IV is the way you want to go, considering that you might be the one paying for it.
I was in your same boat. I could afford to pay out of pocket. So, as stated in my letter, I went ahead with my IV treatment, and continued to write to my insurance company.
They did end up paying it all. That may, or may not be your outcome.
But...realize that this is part of the game that they play...deny, deny, deny, stall, stall, stall.
Just realize that. Find someone to laugh about it with. Post here to vent, and just keep steadily after them.
In my case, I still have some unanswered questions regarding my vanco and bicillin. I have called the representative at my insurance company and left him 2 separate messages a week apart (he's in the legal dept of the company, and has been working with my state insurance commission on my concerns).
He has not returned either call. So, next week, I will mail another letter off to the state insurance commission, mentioning that 2 calls were made without a response.
Do get a notebook, and note each action that is taken. Date, what was done (phone call or item mailed) and who you spoke with on the phone or who received your letter.
Don't let it get you angry (hard to do I know)...you need your energy to get well.
Just try to laugh over it...and hang in there. Some day...things will change.
Good luck....Timaca
Posted by bettyg (Member # 6147) on :
Jeff, my hat is off to you on the wonderfully written letter guided by Timaca's sharing of her own letter for us to use as a guideline!
Sorry you & daughter are so sick.
Could a family member help you on all of this?
I have found for myself I can't read my own writing any more, as they talk to me; I'm busy typing their conversation as we speak since I'm a fast typist.
A former public health head person told me 2 days ago when she was admin for years that once you appeal anything 80% ARE APPROVED.
Hang in there, and DO NOT GIVE UP. We're here for you. I'm going to battle w/BCBS after I receive my written denial with SPECIFICS why I was denied which I required from vp of company last week. Best wishes Jeff. Bettyg Posted by JeffM (Member # 8919) on :
Thanks for ALL your replies and help.
I have a plan. Let's see if it works.
As far as advice for my daughter goes: Thank you, but she is 19. She won't listen to a thing I say. She is a help rejecting complainer.
Although I understand she is sick, and acts that way because of it, it is too toxic for me to be around. I am handing this over to g*d, her, and her doctors. Of course she has my unconditional love. I just cant be involved in her treatment anymore. Everything goes haywire.
Posted by lou (Member # 81) on :
Sending you one more pm and then I will butt out. And wish you luck in overcoming the many obstacles in the path.
Posted by seibertneurolyme (Member # 6416) on :
Up
Posted by njlymemom (Member # 15088) on :
it is a great letter, what a great job you did
i made the mistake of not appealing last winter
i just could never write a letter like that
my brain won't allow it -
i printed your letter out in the hope that i
can use part of it when the time comes again
to think you can do this when you are so ill
good luck to you and your daughter
Posted by Ann-OH (Member # 2020) on :
posted - July 11,2008 I am really getting confused by the fact that somehow there is no date on any of the postings. In this case, this letter was written by Jeff in 2006. Are people responding to it currently? Didn't we used to have a date on every post???
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