DATE:
July 30, 1998
TO:
FROM:
RE:
CC:
In June, Lucy Finger advised me to direct problems concerning Lyme-Disease (LD) treatment denials by First Health to you. Since the problems are considerable, I will be sending you a series of communications that should help you realize the dire need for access to the appropriate physician-recommended medical treatment for this debilitating and potentially disabling condition. I am acting on James's behalf as patient advocate.
Patient Advocate Qualifications
I am a technical writer/researcher who became permanently disabled as a result of Lyme disease, and its attendant afflictions of chronic encephalitis, temporal lobe epilepsy, stroke activity, Lyme meningitis, Lyme arthritis, chronic fatigue syndrome, sleep apnea, fibromyalgia, and a series of other medical problems caused by LD. My case was extreme, and permanent damage resulted before diagnosis and treatment.
I have spent the last 3 years researching this disease to better understand its effects on the body and the brain and to learn what I can do to promote my own wellness and to help educate others. My information has been obtained from the latest medical publications (online and at the library), the Lyme Disease Network (www.lymenet.org), other medical and government web sites, my own collection of doctor-recommended books on LD, recent medical journal articles, and my own extensive experience with LD treatment and with other LD sufferers.
When I first became disabled, I had no clue that I was going to have to develop a "new" career as an insurance advocate to protect my rights under the law, yet this is common among Lyme-disease patients. The battle with plan administrators is worse than the disease itself. The bureaucratic nightmare that goes along with this diagnosis is unconscionable. In short, I have become a "Lymie," which is a person who becomes involved in information concerning the disease, acts as an advocate for themselves and others, participates in organized advocacy groups (such as Victims Of Insurance Company Exploitation (VOICE)), writes articles and editorials to newspapers, fights the discrimination surrounding this disease, and actively petitions government representatives to promote awareness and emphasize the need for change in legislation that so far protects the insurance industry at patient expense. (Yesterday "Oprah" aired her first show on LD, along with ABC's Dr.Nancy Synderman. The people who started "The Lyme Disease Foundation" were interviewed as well. I will follow up on the need for Oprah to provide more programming and more awareness.)
Although I was never denied any specific treatment protocols, my former company, LabCorp (also an ERISA plan), aggressively tried every means to illegally and fraudulently deprive me of my COBRA coverage. We had to enlist the services of the U.S. Department of Labor, who provided us with the actual COBRA laws (LabCorp deliberately misquoted the wording and presented it as fact). The Labor Department also sent copies of several judgments levied against companies trying to defraud covered employees. They also intervened directly. Furthermore, I was actually due a 10-month extension in coverage because my termination was the result of a disabling illness. With this excellent treatment, I have regained much of what was previously lost, including the ability to read and write, though my capabilities are not consistent from one day to the next. (Note: I would also have lost my verbal functioning if we had not gotten involved with musical therapy in the form of Karaoke. Although I have always loved music, I never had any musical abilities. The graphical nature of Karaoke uses the right brain and exercises the damaged left brain. The power of music therapy (especially voice therapy) and its unique ability to facilitate healing is the subject of much fascinating medical research.)
Please see the following pages for a detailed explanation of these problems. Thank you in advance for your time and consideration in reviewing this material. If I can provide additional supporting information, please advise.
Immediate Intervention Needs
We need a written guarantee of access to LD treatment protocols, as recommended by our doctor, so the appropriate antibiotic treatments can be administered. We also need immediate payment of previously denied claims (which are considerable) so our doctor will agree to continue to treat James.
James is currently on a 90-day probation period with MRG because of increased neurological and central nervous system involvement caused by the Lyme encephalitis and the proliferation of the spirochete in his system. After his recent hospitalization, we know the damage is worse than previously known. Furthermore, we do not have all the results back on the EEG or evoked potentials testing, but we know they show very unfavorable brain functioning, optic nerve damage, and facial paralysis caused by the infection that hospitalized him.
We do not have the luxury of time to wait for First Health's "required" appeals process or to request a U.S. Department of Labor investigation. Immediate treatment must be obtained in order to improve James's condition enough to meet MRG's mandated compliance requirements necessary to save his job and return him to his status as a productive, full-functioning, highly skilled technical employee. This performance compliance cannot possibly be achieved without the appropriate medical intervention to improve the present state of dysfunction. His recent hospitalization and disability shows the dramatic debilitating effects of this disease. We are appealing to you to intervene for us so this process can begin immediately before further deterioration occurs.
James's Treatment History
In February 1996, James was diagnosed with LD and was started on a course of oral antibiotics. In May 1997, James's physical condition worsened significantly (e.g., severe joint, muscle, and bone pain, fatigue, increased sleep disturbances, and confusion). He was started on the more aggressive intramuscular antibiotic therapy through December 1997.
First Health "Information" Requests
The following "requests for information" show the intentional delay tactics of First Health. They have had all this information since the beginning of treatment since they have supposedly been "paying" the bills. LD is an incurable, chronic disease, so much of the following information is irrelevant and is simply designed to delay payment.
June 11, 1997
July 2, 1997
July 21, 1997
August 14, 1997
"Professional Review" Denials for Treatment
It is painfully obvious that the only "professional review" of the extensive and irrefutable records and reports was a financial one performed by insurance bureaucrats and plan administrators who are interested only in profit margins and not qualified clinicians, much less anyone familiar with the treatment protocols for Lyme disease. As a result, James's condition has worsened significantly, and now both his health and his job are in serious jeopardy because First Health plan administrators are reimbursing only for the least effective (i.e., least costly) treatment protocols. There is obviously no "professional" comprehension of the disease, its treatment plans, or the devastating consequences that can result from lack of proper treatment as recommended by highly specialized Lyme-disease clinicians by these "reviewers".
Treatment Protocols
Diagnosis and treatment of LD remains a clinical one. No one treatment, no one antibiotic, and no certain timeframe of treatment will improve symptomology. Insurance accountants certainly cannot recommend the treatment for a patient. If proper treatment had been authorized, we would not be in this position. How can MRG demand improvements in "performance" without approving the treatments that will facilitate healing and therefore provide these performance improvements? That's like telling someone who has a broken leg to run a mile or lose his job.
There are currently three types of antibiotic therapy used to treat Lyme disease: oral (six different types, which address separate areas, depending on presenting symptoms and patient response), intramuscular, and intravenous. The clinician must make his decision based on the patient's presenting symptoms and his response to the treatment, which takes time to evaluate correctly. Adaptations in treatment must be made by the clinician based on his personal observations and the patient's feedback. There is no one treatment. Each patient responds to treatment differently and must be closely observed and monitored. Therefore, insurance companies and plan administrators certainly cannot be the ones to determine appropriate treatment protocols.
Additional Information
The following pages provide
