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Lyme Legislation: Two Bills - Two Differences.
June 22, 2005
By Randy Sykes
When I first started looking at both bills, first the Kelly bill since it was introduced first then the
Smith bill, I really didn't notice much of a difference except for the dollar amounts requested. I though it would
be great to have $100,000,000 but realistically in this economy we are in now, I felt that the one that had a chance
of passing was the request for $50,000,000.
Upon further research I noticed who would be benefiting from the dollars. The Institute of Medicine (IOM), which
is part of the Nat'l Academy of Sciences (NAS, which houses the IOM), to do a chronic Lyme study. Once the money
goes to the NAS, the HHS advisory committee has no oversight in the study. There is no transparency in the study
when it hits NAS. It is done according to NAS's choosing, with NAS selecting its own advisory committee, and conducting
ALL deliberations in private closed meetings. (Look at the attached web sites and the familiar players, Steere,
Wormser etc)
This is a problem because Sunshine laws only cover government activities. There are no laws that allow for any
public oversight of how another chronic Lyme study is done outside the government. A search of the NAS website
shows that NAS is already aligned with the medical side that declares two-weeks cures all. Go to the National Academy
of Sciences and search for both "Allen Steere" and "Lyme disease." Only one side is presented
within NAS own paid publications. He is their expert and has authored, FOR NAS, publications on Lyme, which NAS
published.
Why spend this time getting a Tick-borne Advisory Committee and then give the money to a nonprofit outside this
committee's reach? And, especially, why give it to the group that already has expressed its views as being on the
opposite side to the patients and clinicians ("stakeholders") voicing their lack of having input into
these studies?
However, the Kelly bill gives money only to areas that the Tick-Borne Advisory Committee has oversight of. Why
fight for an advisory committee and then give money covering a study into the most sensitive area of Lyme, the
definition of, diagnosis of, and treatment of Chronic Lyme, to a place where the public has no input? This is like
shooting oneself in the foot!
Again, let me emphasize that once the money goes out of the government, into a private foundation, NO ONE BUT THE
NAS, has any say in how the money is spent. And, they establish their OWN advisory committee to do studies, choosing
THEIR EXPERTS, and the whole process is run by them without input by any governmental body. THE PUBLIC AND CLINICIANS
WILL HAVE NO OVERSIGHT over this NEW Chronic Lyme study.
If the money stayed in the government, then the public would have the "Government in the Sunshine" laws
that mandate public meetings, reports, the ability to get Freedom of Information material on the process and funding.
NOT SO, with the private NAS. It's private.
The physicians and patients can't survive another chronic Lyme study - Klempner and Steere have pretty well done
us all in already.
Institute of Medicine
- Members of the Forum on Microbial Threats
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