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“Protecting the health and informed consent rights of children since 1982.”
Following is a press release issued jointly by the Lyme
Disease Foundation and the National Vaccine Information Center (NVIC) on May
23, 2001 and a statement made at the press conference by NVIC co-founder and
president Barbara Loe Fisher.
SENATORS DODD AND SANTORUM INTRODUCE LYME DISEASE BILL
WHILE CONSUMERS AND
Washington, D.C. – May 23, 2001 - As Lyme disease cases
reach a record high across the country, representatives of the patient
community traveled to Capitol Hill today to lend their voices in support of new
legislation designed to give them a greater voice in the direction of Lyme
disease and other “tick-borne disorder” federal research. Senators Christopher
Dodd (D-CT) and Rick Santorum (R-PA) announced the introduction of a bill to establish
a Tick-Borne Advisory Committee, appointing public members from the patient and
research community to interact with government officials responsible for Lyme
disease research and public education activities.
The patient community has long felt alienated and ignored
by federal research efforts.
Additionally, the debate about treatment methods for this illness has
led many physicians to refuse to accept
Lyme disease patients further limiting access to quality treatment. In announcing this initiative, the Senators
held up this model of patient and government interaction as an effective
mechanism for moving research and treatment development forward.
Compounding the patient community’s frustration is a
continued distrust of the efficacy and safety of the lone vaccine on the
market. Reports of serious adverse
reactions in some vaccine recipients are prompting many experts to call for a
re-examination of the vaccine and its usefulness to the public in general.
“We need a vaccine but the one out there right now is
surrounded by question marks, said Karen Vanderhoof-Forschner, co-founder and
president of the Lyme Disease Foundation, which sponsored the rally. “I cannot in good conscience encourage
anyone to take the vaccine. There are
just too many unanswered questions.”
Research scientist Paul T. Fawcett, Ph.D. of the Alfred I.
duPont Hospital for Children, spoke about the findings of a well-controlled
study examining the effects of the Lyme vaccine on diagnostic tests which also
documented serious adverse events associated with the vaccine. He was joined by
Ronald Schell, Ph.D., University of Wisconsin Medical School and Wisconsin
State Laboratory of Hygiene, and Julie Rawlings, MPH, Texas Department of
Health. Barbara Loe Fisher, co-founder
and president of the National Vaccine Information Center and vaccine victims
Jenny Marra, of New Jersey, and Joe Smigo of Pennsylvania, also urged federal
health agencies to investigate mounting evidence that the current Lyme vaccine
is too reactive.
May 23, 2001 STATEMENT BY BARBARA LOE FISHER, NATIONAL
VACCINE INFORMATION
As a parent of a DPT vaccine injured son, my heart goes
out to all of the adults and children who have suffered devastating health
problems after either Lyme infection or Lyme vaccination. The pain and
suffering, whether from a disease or a vaccine, is the same and we must find
more effective ways to treat and prevent Lyme disease.
From a consumer advocate perspective, putting the public
back in public health means being truthful with the people about the benefits
and risks of any medical intervention and allowing fully informed, voluntary decision-making.
If vaccine manufacturers and health officials are not honest with people about
vaccine risks and write off serious health problems following vaccination as
mere “coincidences,” as has happened with the Lyme vaccine, then the people are
going to lose faith in the vaccine system.
Karen and Tom Forschner had faith that the system would
work when they joined with federal health agencies and a vaccine manufacturer
to support development of a Lyme vaccine. Now they cannot turn away from the
terrible suffering that has resulted from inadequate disease treatment and use
of a vaccine that is just too reactive.
We need to do everything we can to insure the highest
standards are maintained for vaccine licensing and policymaking in order to
truly protect the public health. The National Vaccine Information Center stands
ready to work with the Lyme Disease Foundation, scientists, legislators and
public health officials to do what it takes to develop more effective
treatments for Lyme disease and make sure that there is full public disclosure
by vaccine manufacturers and health officials of all risks as well as benefits of
any vaccine on the market.
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Information
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does not receive government funding. Barbara Loe Fisher, President and
Co-founder.
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