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The Lyme Times
LDANJ worked with Congressman Chris
Smith (R-NJ) for several months drafting
the first federal Lyme bill. Congress did
not pass the bill that year or in the next ten
years that Cong. Smith introduced it. We
collaborated with the Lyme Alliance’s na-
tional drive to collect 50,000 signatures on a
petition to support the bill and send letters
and limes to President
Clinton. LDANJ awarded
a record $60,000 in grants
to researchers.
Seasoned advocates
had done their homework
and were on the warpath.
LDANJ president Pat
Smith minced no words
in a speech in June 1998.
Indignantly, she told a
group of legislators that
school physicians were
preventing children from
receiving proper accom-
modations under the
federal disability law. “I
have witnessed outright
emotional cruelty in
meetings with school
personnel when a child’s
plight is not believed and
the parent is brutally ques-
tioned in an accusatory
fashion,” Smith said.
She was appalled at how
much money her school
district was spending on
special accommodations
for children disabled by
Lyme.
LDF’s Karen Forschner
delivered strong tes-
timony in February 1999
at CT Attorney General
Blumenthal’s
hearing
on insurance coverage.
“Lyme costs society over
one billion dollars per year,” Forschner
said, citing a survey of 1,000 patients done
by LDF, Society of Actuaries, and the Stern
School of Business.
“Early diagnosis and treatment decreases
insurer costs. Insureds diagnosed in less
than seven months needed an average
of three doctors to get diagnosed and
cost about $35,000. Insureds taking 7-12
months needed an average of five doctors
to get diagnosed and cost $68,000. Insureds
taking over 12 months to get diagnosed
needed an average of seven doctors and
had an average cost of $92,000.”
At the same hearing, the audience gave
Lyme specialist Steven Phillips, MD, a
standing ovation for his presentation on
persistent infection.
Doctors were finally beginning to or-
ganize themselves as well. In 1999 a group
of doctors and scientists gathered in Boston
and formed the International Lyme and
Associated Diseases Society (ILADS).
The past as prologue
Ten years after the first advocacy groups
had been formed, the Lyme Wars were
becoming more intense. The vaccine,
the surveillance case definition, the two-
tier testing protocol, insurance denials ...
patient advocates were having to juggle
many sophisticated concepts and deal with
the personal ravages of Lyme disease at the
same time. The opposition was powerful
and digging in, but patients were learning,
too, and becoming better organized for the
battle.
It is now 25 years
since a small group
of amateurs started
the Lyme Disease
Resource
Center.
We have earned our
spurs. Today,
Lyme-
Disease.org
publishes
a respected journal,
funds research, or-
ganizes meetings and
workshops, and runs
a nationwide network
of state groups con-
necting thousands of
patients. We maintain
a popular website,
several blogs and a
presence on Facebook
and Twitter. And we
continue to organize
and support patient
protests - the heart of
our original advocacy
efforts.
With similar dedi-
cation, there are nu-
merous other patient
support and advocacy
groups doing good
work, as well as infor-
mative online groups
and blogs. Despite the
continuing struggle,
much has been ac-
complished. Collec-
tively we’ve raised
public awareness immensely – a critical
task that must continue. We’ve passed im-
portant laws, participated in powerful
protests, lobbied and educated Congress,
organized patient and professional con-
ferences, published books and articles, and
much more. It’s time to look back and rec-
ognize all the people who began the march,
because we all are riding on their shoulders
and building upon their successes.