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Science Forum Index » Medicine - Lyme Forum » The Lymerix 411
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| LunaTick |
 Posted: Fri Jan 19, 2007 11:23 pm |
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Guest
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xcerpted from the January 200y issue of Epidemiology and Infection.
Nigrovic and Thompson provide an instructive summary of the rise and
fall of the Lyme vaccine (LYMErix). The history of LYMErix continues to
offer important lessons about the interactions of science and society,
and how the archival and tautological power of the internet complicates
those interactions. Two important points about the ongoing LYMErix
controversy should be highlighted.
First, many Lyme disease patients and activists initially supported the
idea of a vaccine against Borrelia burgdorferi. They lobbied Congress
for more research, and persuaded U.S. Senators to urge the Food and
Drug Administration (FDA) Commissioner 'to hasten the agency's
review of vaccine applications' for Lyme disease. Yet, the quick
approval of LYMErix generated not satisfaction among activists, but
hostility.
A number of people who are familiar with Lyme advocacy groups or have
followed the internet discussions about Lyme disease during the last
decade suspect the hostility to LYMErix had less to do with questions
about its safety and efficacy and more to do with a general distrust of
academic and government scientists, and the potential loss of influence
and funding among many activists.
Activists and self-described 'Lyme victims' had devoted years of
effort to raising an obscure tick-borne nuisance in Old Lyme,
Connecticut to a national reportable disease that attracted tens of
millions of federal research dollars each year. They were courted by
the press and had easy access to Congress and state house
representatives. Many activists started tax-exempt foundations, held
fee-based conferences, and set up websites to sell products and attract
sponsors. Some even collected donations from vaccine manufacturers.
These political and financial gains occurred even as infectious disease
experts were refuting the activists' portrayal of Lyme disease as a
menacing national plague.
The licensure of LYMErix confronted Lyme advocacy with the added
problem of how to sustain public anxiety (and donations), media
attention, and political clout against the evidence-based reality of a
bacterial infection that was antibiotic-responsive, non-fatal,
non-communicable, geographically focused, and-now-preventable
through vaccination.
The vaccine's imperfect efficacy, projected cost, and potential
booster requirements were the immediate targets of activists'
attacks. Ad hominem attacks on individuals involved in the vaccine
trials quickly followed; stoked by a simmering animosity between many
patient activists and clinicians over the appropriate diagnosis and
treatment of Lyme disease. These personal attacks-and anecdotal
horror stories about Lyme disease in general and the vaccine in
particular-took place on the internet.
This is the second important point about the successful assault on
LYMErix. By the late 1990s, most people were gathering information
about vaccines and other medical questions from the internet and not
from traditional media outlets as suggested by the authors.
Unfortunately, what people found online were activist websites filled
with misleading information about the vaccine, personal 'vaccine
victims' stories, and newsgroup bulletin boards offering a repetitive
stream of misinformation, libel and quack treatments. Aside from an
occasional press release, journal article or FDA hearing, no effort was
made by public health officials, researchers or vaccine manufacturers
to counter the online denouncements of LYMErix and its supporters.
The public opinion battles over LYMErix were fought, and lost, in
cyberspace. The battle over the next generation of Lyme vaccines is
already underway. Vaccine manufacturers and researchers need to develop
communication strategies that will provide the wired public with
accurate and compelling information about new vaccines and the public
health benefits of immunization. It will be an expensive and
complicated task, but so is the development and testing of a vaccine
that no one will use. |
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