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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


*                  The National Lyme Disease Network                  *
*                         LymeNet Newsletter                          *

IDX#                Volume 2 - Number 21 - 12/16/94
IDX#                            INDEX
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


 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
  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

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.  


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

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.


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: .  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.  


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

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.


[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.


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)
SEND ALL BUG REPORTS TO [email protected]

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