LymeNet Newsletter Volume 2 Issue 21

Volume: 2
Issue: 21
Date: 16-Dec-94

Table of Contents:

I. LYMENET: '94 CDC LD Count Hits 10,000 Against The Odds II. LYMENET: Lyme Disease Network to Hold Radiothon in January III. LYMENET: New Legal and NIAID Gopher Sections Opened IV. LYMENET: Patient Offers Insurance Advice V. About The LymeNet Newsletter

Newsletter:

*********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * ***********************************************************************

IDX# Volume 2 - Number 21 - 12/16/94 IDX# INDEX IDX# IDX# I. LYMENET: '94 CDC LD Count Hits 10,000 Against The Odds IDX# II. LYMENET: Lyme Disease Network to Hold Radiothon in January IDX# III. LYMENET: New Legal and NIAID Gopher Sections Opened IDX# IV. LYMENET: Patient Offers Insurance Advice IDX# V. About The LymeNet Newsletter IDX#

INTRODUCTION:

This is the last issue of volume 2 of the LymeNet Newsletter. Volume 3 will begin publication in late January, 1995. The editors would like to thank all the contributors who have participated in this experiment in mass communication.

I. LYMENET: '94 CDC LD Count Hits 10,000 Against The Odds ------------------------------------------------------------ Source: LymeNet News Byline: By Marc Gabriel Date: December 13, 1994

Despite documented wide-scale underreporting, the 1994 CDC count of new Lyme disease cases reached 10,090 in the 46th week of reporting. With six weeks left in the year, this count exceeds last year's total count by more than 1,800. If current trends continue, this year's total could be 30% greater than last year's.

For various reasons, the number of CDC case reports does not reflect the actual number of cases. In order for CDC to count a case, the following hurdles must be overcome:

1. The patient must fulfill the CDC Surveillance Case Definition. This restrictive definition eliminates a large number of patients from the count. 2. The physician must report the case to the local or state health department. A recent study of Connecticut physicians found that relatively few reported cases. Many physicians simply don't want to bother with the paperwork. Others are afraid of intimidation by various local government agencies, many of whom simply refuse to acknowledge that LD exists in their communities. 3. Finally, the CDC's National Center for Infectious Diseases must receive and accept the case report. Even though the report may meet their criteria, health department officials at all levels can simply delete the case from a health department computer systems. It is unknown how many cases are deleted each year.

Gale Colby of Princeton, NJ, experienced the failure of the reporting system first hand. Despite a physician observed EM rash on May 26 and positive serology several weeks later, her case wasn't counted.

Aware of the reporting problems, Gale contacted her local health department one month ago to ensure her case would be counted. When she discovered that a case report had not been submitted, she called the doctor who diagnosed her. The physician flatly refused to fill out the report, claiming that the whole process was a "waste of time." He asked Gale if she would pay for his secretary to fill out the required paperwork.

Gale called the New Jersey Department of Health to report the physician's comments. The Contagious Diseases section said that they would partially fill out the forms and send them to him. If the doctor fails to cooperate, they would consider contacting the state Medical Review Board. As of Tuesday, no report had been filed.

CDC representatives told Gale they were powerless against this huge problem. They noted that some New Jersey counties, notably Hunterdon, were more responsible than others.

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II. LYMENET: Lyme Disease Network to Hold Radiothon in January ---------------------------------------------------------------- Source: LymeNet News Byline: By Marc Gabriel Date: December 8, 1994

The Lyme Disease Network of New Jersey, Inc, will hold a fundraising radiothon on Saturday, January 21 from 8am to noon on WCTC 1450 AM in New Brunswick, NJ. Dr. Derrick DeSilva, an internist specializing in the treatment of Lyme disease, will host the show. Various LD experts in the research and treatment fields will be interviewed.

For more information on the radiothon, including how your organization can sponsor a segment, contact Bill Stolow, President of the Lyme Disease Network, at: [email protected] or 908-390-5027.

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III. LYMENET: New Legal and NIAID Gopher Sections Opened --------------------------------------------------------- Source: LymeNet News Byline: By Marc Gabriel Date: December 10, 1994

Two new information resources are now available to the public via the LymeNet gopher server. The section on court cases documents several state and federal legal proceedings involving LD, while the NIAID section provides readers with an overview of the research efforts of the National Institutes of Allergy and Infectious Diseases. NIAID is a component of the NIH.

You may search the LymeNet gopher server by pointing your gopher client to: gopher.lymenet.org . For a more complete list of LD resources on the Internet, please request the recently updated LymeNet Resource Guide. Instructions for obtaining the Guide are provided in the last section of this issue.

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IV. LYMENET: Patient Offers Insurance Advice ---------------------------------------------- Sender: Susan Dawson <[email protected]>

I have been disabled with neuroborreliosis since June 1991. However, suddenly going from successful professional to barely managing basic self-care has not been my biggest problem. Nor has contracting a controversial, little understood disease. My biggest problem has been insurance.

Part of the problem has been the logistics of filing forms and learning regulations while disabled and in the midst of a crisis. What seems to be a simple matter to healthy, functioning adults ("It just takes a few phone calls") is a major project occupying many full days of effort for me. The endless maze of paperwork is, in itself, daunting.

I am also fighting regulatory battles. I have been fortunate. Neither my diagnosis nor most of my treatments have been challenged directly. Even so, between my husband (who also has Lyme) and myself, we have $55,000 unreimbursed by medical insurers (exclusive of deductibles and co-payments). Once I believed my problems were unusual; the result of insurance through a small business and bad luck. However, as I worked with regulators, lawyers, and legislators I began to realize that my problems are a result of the system and are wide-spread.

The "system" was created by a federal law, the Employee Retirement Income Security Act of 1974 (ERISA). "More than half of all employees in the United States now work for self-insured companies, many of them large corporations, which hire insurance companies to manage their workers' claims."[1] The objective of ERISA was to establish a uniform law for regulating employee benefit plans so that multi-state employers would not have to deal with conflicting state laws.[2]

Like many ideas, it sounds good. However, in practice, it has problems. "Although such plans, free of state oversight, are supposed to be regulated by the federal government, it has never provided effective oversight."[3] The responsible regulatory body is the US Department of Labor. A Department of Labor agent said that in his office there are 26 investigators over-seeing 187,000 insurance entities. Regardless of how well intended the investigators are, there is a limit to what they, as mortal human beings, can do. There are only a few specific areas where the Department of Labor has jurisdiction and only in those areas is there a possibility of enforcement. The Department of Labor has a complex automated telephone system that provides a description of the regulatory requirements.[4]

The Department of Labor recommends hiring a lawyer to solve problems. The assumption under ERISA is that control will come through the judicial system. However, like so many things, this is easier said than done.

First, only in specific situations can a person recover anything more than the direct costs (such as legal fees or consequential damages) from an ERISA regulated insurance entity. The result is that lawyers cannot afford to take such cases on contingency so people already financially strained by illness and insurance problems must pay the legal fees up-front.

Second, no matter how absurd, capricious or damaging the insurance entity might act, an individual cannot make a claim in the court unless a specific law has been broken.

Third, a person must substantiate the claim. Everything must be documented. Unless time is critical, I do not talk to my insurers. As absurd as it sounds, I have had coverage denied because it "wasn't pre-approved" in spite of three independent parties (myself, the IV company and the doctor's office assistant) calling for pre-approval and recording names, dates, and times. I keep a phone log of all insurance and medical conversations. With my insurer, I put everything in writing and get delivery receipts.[5]

Finally there needs be substantial harm (that unfortunately must be measurable in money). In my situation eight lawyers have declined the case even though it is well documented and specific regulations have been broken because it is not economically reasonable.[6] For most of us the judicial system does not provide a viable alternative.

However, graciously accepting a loss of tens of thousands of dollars isn't acceptable either. For me the solution has been letter writing. I find for every nine letters that I write, I get ignored four times, I get a polite non-answer four times and I get action once. Also, I have learned that you never know who will help when. I have written my own Congressman, five times (once personally putting the letter in his hand) and have yet to get a response. However Congressman Frank Pallone, who is not my representative, has been very helpful. My letter caught the attention of his staff and they referred the letter to the Department of Labor. That started an investigation. Coincidence, perseverance and luck got me help. Congressman Pallone's aide explained that they received two well written letters on the same subject on the same day.[7]

Writing local regulators has been valuable as well. Even if they are limited in what they can do, regulators are intimidating by their nature. Most businesses, including insurers, don't want to be involved with them. In addition, letter writing makes the regulators aware of problems. While they can't help the individual, they can work to help the community. The National Association of Insurance Commissioners has asked Congress to rewrite ERISA. State insurance commissioners know there is a problem and are trying to solve it because of people like me are writing letters.

I am an entrepreneur and as such I believe that whatever it is, it rarely "can't" be done. Just about anything can be accomplished if you find the right approach. Finding the right approach is a matter of understanding the problem, identifying the correct adversaries, finding allies, finding alternatives, and perseverance. I know my insurers have me at a disadvantage but I am not giving up. I may not succeed but I have the dignity of fighting back.

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[1] "The New York Times" September 21, 1994, National Section, page B7. Back issues of "The New York Times" can be obtained by calling (800) 543-5380.

[2] Many employees don't realize that their employer is self-insured and that they are not covered by a commercial insurer because commercial insurance companies act as claim administrators. As a result employees often waste time and energy fighting the administrator rather than the insurer (their employer).

[3] "The Wall Street Journal" January 19, 1994, front page.

[4] (212) 399-5236 for the New York - New Jersey area. I suggest calling when you have lots of time and the phone rates are low.

[5] Certified mail with a return receipt costs $2.00 plus the appropriate postage. It provides documentation that not only when was a letter sent but when it was received. However, I find the post office unreliable. For certainty I use Federal Express. Federal Express gives me a "quantity" discount for one or so shipments a month and picks up at my door. (Which helps as I don't drive. I could save $1.50 if I could get to a drop box.) I can get the delivery documentation off my computer within minutes of delivery and the software was free. While other express carriers offer comparable services, I have been too happy to check them out.

[6] The press sometimes makes a fuss about "outrageous" court awards, overlooking that for every successful claim there are many valid claims that couldn't get into court. Awards must be sufficient to deter repeat offenses. We, as a community, need to stand together and support those who get to court because their successes help us all. Some sources of information about current Lyme related legal battles include: "the Lyme Times" (Lyme Disease Resource Center P.O. Box 9510 Santa Rosa, CA 95405) and the LymeNet Gopher Server.

[7] While talking with Congressman Pallone's aide I was disturbed to learn that, while they are aware of the problems in the Lyme community, they are not getting many letters. While they cannot help with every situation, they will help when they can. In addition when they get enough letters, they can use the information to influence other members to act for the community as a whole.

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V. ABOUT THE LYMENET NEWSLETTER ---------------------------------- For the most current information on LymeNet subscriptions, contributions, and other sources of information on Lyme disease, please request the LymeNet Resource Guide. To obtain the Guide, send a blank message to: [email protected] ----------------------------------------------------------------------- The LymeNet Resource Guide is in Revision: 1.10 ----------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX: 908-789-0028 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director <[email protected]> William S. Stolow, President <[email protected]>
The Lyme Disease Network of New Jersey (908-390-5027) ----------------------------------------------------------------------- WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITORS. ----------------------------------------------------------------------- THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS FREELY AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY. ----------------------------------------------------------------------- SEND ALL BUG REPORTS TO [email protected] -----------------------------------------------------------------------