posted
...okay, so I say that tongue-and-cheek- but after reading the excerpt from Dr. S. new book, you can kind of see what I mean.
For those who have not read it, here is what it says:
In 2001, both the House and Senate passed legislation that calls for the accurate, uniform diagnostic test for Lyme disease.
Congress also instructed the CDC to correct the misuse of its surveillance criteria for Lyme disease as a method of diagnosis.
The legislation, known as Public Law 107-116, was signed by President Bush on January 10, 2002. I have added some text from this law:
The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor.
The situation has led many people to be misdiagnosed and delayed proper treatment.
The vaccine clinical trials has documented that more than one-third (36%) of the people with Lyme disease did not test positive on the most sophisticated tests available.
The ramifications of this deficit in terms of unnecessary pain, suffering, and cost is staggering. The Committee directs CDC to work closely with the Food and Drug Administration to develop an unequivocal test for Lyme disease.
The Committee is distressed in hearing of the widespread misuse of the current Lyme disease surveillance case definition.
While the CDC does state that ``this surveillance case definition was developed for national reporting of Lyme disease:
it is NOT appropriate for clinical diagnosis,'' the definition is reportedly misused as a standard of care for health care reimbursement, product (test) development, medical licensing hearings, and other legal cases.
The CDC is encouraged to aggressively pursue and correct the misuse of this definition. This includes issuing an alert to the public and physicians, as well as actively issuing letters to places misusing this definition.
The Committee recommends that the CDC strongly supports the re-examination and broadening of the Lyme disease surveillance case definition by the Council of State and Territorial Epidemiologists.
Voluntary and patient groups should have input into this process. Currently there is just one definition (``confirmed case'') of seven possible categories.
By developing other categories while leaving the current category intact, the true number of cases being diagnosed and treated will be more accurately counted, lending to improved public health planning for finding solutions to the infection.
The CDC is encouraged to include a broad range of scientific viewpoints in the process of planning and executing their efforts.
This means including community-based clinicians with extensive experience in treating these patients, voluntary agencies who have advocacy in their mission, and patient advocates in planning committees, meetings, and outreach efforts. --------------------------------------------
None of this is happening and NOBODY is accountable. Doesn't Congress appropriate funding to the CDC? If so, how can they continue funding to them? Any person would be fired from their job if they were this blatantly awful at not attaining their goals and objectives!!!!!!!!!!!!
It is their regulations and guidelines, the very one's that Congress discusses above, that is killing people!!! (So, what's the definition of manslaughter???)
Your passion for fairness is duly noted. But your quote about a distressed Committee (etc) is not law. It's in the committee report accompanying PL 106-117.
Committee reports can indicate the will of congress but if Congress was distressed about the CDC's Lyme policies, PL 106-117 does not say so. In fact, the word Lyme is not found in PL 106-117.
It is not always easy to discern Congressional will. Under the theory that talk is cheap and acts speak louder, a judge could conclude that Congress does not rank Lyme disease high on its list of things to stress over.
Has Congress ever passed a law demanding the HHS (which oversees the CDC) do anything?
The HHS secretary is a member of the Executive cabinet. Under theory of "Separation of powers" the Congress has limited options. Courts have found that in certain instances Medicare can operate outside of the realm of where people claim constitutional rightrs. So it does not seem likely that Congress will say the CDC's Lyme policy is unconstitional
By the time Public Health officials were sued for their Tuskegee syphilis study, 40 years' S.O.P. had passed, and much data was gathered. Still, it took adverse media exposure and public outrage to get the Govt. off dead center.
An official aplogy was issued by Bill Clinton 24 years later.
Federal entities are influenced by special interests. AIDS lobbyists waited long before their day arrived. Now they make hay.
Meanwhile, the Lyme cause sits in the shadows.
Jesus told His disciples "Be ye wise as serpents and harmless as doves."
I hopes that helps.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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bettyg
Unregistered
posted
hi mike,
we here you and couldn't agree more.
have you every copied your thoughts here and sent them to iowa senators tom harkin and chuck grassley, FUNDING CHAIR???
also send your house rep in congress too...see what kind of a response you get...
keep us informed when you hear back; harkin is fast on returning letters; takes me 4-6 months to get one from grassley...
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Yes, I have written Harkin and Grassley numerous times. We have finally gotten some calls last week...only after a lady in Pennsylvania called Senator Specter who then called Harkin and Grassley.
Kind of embarassing how it takes a Pennsylvania senator to tell two Iowa senators to take notice of a critically ill girl...one of their constituents!!!!
yes, that stinks big time that neither of them got back to you/lori/family about alex's serious condition now!!!
hooray for your friend from penn. to contact arlen spichter!! i like that guy; i've had a lot of respect for him.
other night i watched 2 hrs. of cspan with NIH 5 DIRECTORS there w/harkin/spector.
spector brought up about his type of cancer and had questions galore about it.
harkin did same thing for things HIS family has had!
guess, it's time we hit the hammer more on those 2 !!!!
i called grassley's des moines office 2 wks. ago and asked that grassley write kennedy and pallone on our lyme bills to GET THEM ON THE AGENDA, but instead i got the above form letter!
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