ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
A Major Announcement about Lyme Disease!
The LDF is pleased to announce that we stand at the threshold of a HISTORIC STEP FORWARD IN LYME Disease! The national association that advises the federal government on Lyme disease has just proposed a significant broadening of the Lyme disease case definition. This will result in a large increase in the number of reported cases, protection for physicians who treat seronegative or chronically ill patients, and potentially increased medical reimbursement for diagnosis and treatment.
The CDC is now poised to adopt the recommended improvements, but some individuals oppose the changes and would rather study the matter further! We all need to act RIGHT NOW to protect ourselves and our doctors! Go to our website to see more at www.lyme.org <;http://www.lyme. org> .
The NEW Case Definition includes the two new categories of "Probable Lyme" and "Suspected Lyme" cases, which will include ALL individuals with positive tests, ALL individuals with symptoms and negative tests, and ALL individuals with EM rash - whether they are in endemic or nonendemic states! Along with this significantly broadened definition comes the Federal Recognition of those manifestations of the disease!!
The current definition, which is used by medical licensing boards and for medical reimbursement, has one category for Lyme disease "confirmed" and includes 1. patients with an EM rash from "endemic" or 2. patients with exposure to ticks + a positive test + a special type of symptom.
The LDF has worked on a broadened CDC case definition for over a decade, knowing that by including seronegative Lyme and Lyme cases in non-endemic states it gives Federal Recognition to and legitimizes the plight of patients across the country and the physicians right to treat them!
Posts: 2275 | From NC | Registered: Oct 2000
| IP: Logged |
bettyg
Unregistered
posted
thanks connie for posting big announcement.
could you edit and show something about the specific content please?
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Representatives from LDA, CALDA and ILADS have just been working on an analysis concerning the proposed changes in the surveillance case definition. While the addition of the new categories is a plus, several other provisions give us grave concern. I will try to post a comparison of the old vs. the new and explain what the problems are. The changes are not being proposed to increase the sensitivity of reporting. They are being proposed to reduce the workload on health departments that are now having to verify reported cases to make sure they meet their criteria. This requires multiple phone calls and followups to diagnosing doctors. Interestingly, the author states that the proposed changes will not affect what they call the "public health surveillance burden."
I will post the proposed amendment under a new thread.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Guess you figured out the date on the post?
``````````````````````````````````````````````
Some facts and my opinion.
This proposal was prepared for the CSTE and CDC members by the CT Department of Health Epidemiologist, Matthew Cartter.
Unfortunately, Cartter has been supervising the reporting of Lyme disease for many years (since the early days) and has been allotted about $5 million dollars to get it right.
As we all know.. CT's reporting system has been in shambles for a long time... and their messed up ways of doing things or NOT doing things have severely reduced the recording of actual numbers of cases reported... which has been a problem at local, state and national levels... and...
The prevention plan that was suppose to have been in place has failed miserably... as tick numbers, infection rates and human cases are continuing to go up! Connecticut has the highest incidence rate in the country.
Cartter's "new and improved" Rolex $$ reporting system is still not in place or ready to roll (excuse after excuse)... and it is getting so bad the officials in CT are calling him on the carpet for it.. and needless to say, so are most of the groups up there (except the LDF).
From what I understand (and I am NOT from CT so this is only what I have heard) the bill that was needed to be passed in CT recently had interference from him too... and it didn't pass. VERY much like the bills in Maryland.. shame on the health departments.
Not to mention he has worked with Shaperio for years and has published with him on Lyme and the vaccine related stuff and other projects... and is IN the state.. actually the CT health department... where we know Shaperio/Yale is wild and rampant and where Shaperio has been prompted to testify against Dr. J at his Department of Health Medical Board hearings, among other not so nice things.
If you are unfamiliar with Cartter's work in the past... feel free to Google him.
You'll find he is one of only six people to be inducted into the "Lyme Disease Hall of Shame"... along with Shaperio.
The LDF told me they have been working for over a decade to broaden the criteria... and Cartter's amendment is what is needed.
I am sorry, after all my research on the criteria and amendment.. and my experience over the years dealing with this stuff... and MUCH consideration... I can't get behind this man or his amendment plan.
I REALLY don't see this bad amendment as a "historic step forward" for Lyme disease... not at all.
Adopting this amendment, in MY opinion, would be like trying to stick a band aid on someone's neck, right after they got their head chopped off.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This letter.. written by well-known experts in the Lyme community ... is addressing some of the concerns.. like the ones posted in this original post. It is NOT supporting this poster's position.
In addition, over half the states in the US have Lyme groups who are NOT supporting this amendment either ... via signed letter to the CDC and Congress. Four national groups have signed the letter also.
````````````````````````````````````````````````
We would like to address some issues that have been circulating on the internet.
As we stated in our letter to the CDC and CSTE, we wish to review our concerns with proposed revisions to the National Surveillance Case Definition for Lyme disease.
Matthew L. Cartter, MD, MPH, Epidemiology Program Coordinator Connecticut Department of Public Health will propose revisions to National Surveillance Case Definition for Lyme disease on June 27, 2007.
Strengths of the proposed revisions:
The proposed revisions have incorporated the much-needed probable and suspected case definitions.
The proposed revision expands the laboratory testing criteria to include ``a single-tier IgG immunoblot seropositivity interpreted using established criteria''
Weaknesses of the proposed revisions:
1. Currently all EM rashes are considered to be Lyme disease. Under the CSTE proposal, EM cases with known exposure will count. But EM cases with no known exposure will require a positive test.
Endemic is defined as at least two confirmed cases which have been previously acquired or in which established populations of a known tick vector are infected with B. burgdorferi.
How will this effect counting and patients if the CDC adopts this definition for EM rashes?
a) EM cases in non-endemic counties will no longer be counted as reportable cases by the CDC unless they are confirmed with a positive test. Many counties have not been classified as endemic.
Therefore, people in those counties who develop an EM rash without a positive test might not be treated and would not be counted.
b) If a doctor decides to treat an EM in a non-endemic county, the treatment may prevent the development of a positive blood test which is required for the case to be counted, therefore the case will not be counted.
c) Furthermore, late manifestations defined as Bell's palsy, arthritis, lymphocytic meningitis, and high grade heart block will not be reported to the CDC without strict laboratory confirmation in both endemic and non-endemic counties.
In any scenario we are losing case numbers (state numbers will decrease as well as national numbers), preventing the establishment of the disease in non-endemic areas, patients may not receive treatment and insurance companies will have another tool to refuse payment.
The definition of a probable case of Lyme disease is too restrictive. It precludes any other case of physician diagnosed Lyme without evidence of laboratory infection.
The numbers of physician diagnosed cases of Lyme disease including neurologic and psychiatric manifestations cannot be estimated if they cannot be confirmed using strict laboratory criteria.
The suspected cases category undermines the value of mandatory laboratory reporting. States could easily comply their mandatory laboratory requirement without ever contacting a physician merely by reporting all such cases as suspected.
Previously State DPH had to check with physicians to qualify positive cases before reporting them to the CDC.
There is no provision for reporting suspected cases nor releasing the data for suspected cases unless a data sharing agreement is signed.
Instead, the revisions explicitly state that ``states and territories will send CDC case data for all confirmed and probable cases.
Only fully deidentified case data will be released by CDC to the general public. Other releases require signed data sharing agreements using a format pre-approved by the state/territorial health agency.''
Consequences of the proposed revisions:
The surveillance system for Lyme disease varies for each county and state. Connecticut's decision to abandon mandatory reporting in 2003 is an example of the consequences of a state changing its surveillance system.
The number of cases of Lyme disease in Connecticut dropped by 70% merely by changing the state's surveillance system. In contrast to Connecticut, California Lyme disease cases have quintupled since mandatory lab reporting was instituted in September 2005.
Some counties and states may have already chosen not to report Lyme disease cases unless Lyme disease is endemic to the county. If so, emerging areas for Lyme disease will remain unrecognized.
The suggestion that some counties or states may already have restrictive surveillance systems for Lyme disease should not justify the more restrictive revisions in the National Surveillance Case Definition.
The proposed revisions could worsen the problems of underreporting. Additionally, the perceived risk of acquiring Lyme would be diminished for physicians, the public, and the government.
In summary, a proposal of such significance to public health would be more beneficial when implemented after more thorough research and additional discussion.
Daniel Cameron Robert Bransfield Diane Blanchard Nick Harris Lorraine Johnson Phyllis Mervine Pat Smith Raphael Stricker
posted
I find this statement in the first post very puzzling:
[The new categories of 'suspected' and 'probable' cases will count] "ALL individuals with symptoms and negative tests."
After reading the actual proposal at http://www.cste.org/PS/2007ps/ID/07-ID-11.pdf it looks to me like not a single seronegative case will be counted, unless it is culture-positive. (Very rare to get a positive Lyme culture, and how many doctors will do a culture anyway?)
The new proposal clearly states that all probable and suspected cases must have "laboratory evidence of infection." Am I missing something?
Thanks Tincup for posting the experts' comments. Some very interesting points raised.
Posts: 621 | From US | Registered: Jun 2006
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
To whom was the letter written, TC? Has it been published anywhere? If so, can we write somewhere or somebody to support it? Thanks, Ann-OH
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ann Oh...
From what I understand the letter above was written kind of like an educational tool to explain the basic situation concerning the CSTE amendments.
It is a complex issue that some folks don't understand and it was composed and shared to clear up some misinformation circulating through the community.. and so we could all be well informed and on the same page.
There was another 2 1/2 page letter that was also prepared to go to the CDC and some Congressional members that is very detailed and explains the problems with the amendments.
A while back I had a call about the CDC letter from a Maryland group leader who knew I'd be interested.... and since I had just returned to Maryland and didn't have my computer up yet.. they read it to me and I gave my permission to have my group included.. along with groups from over half of the states in the country.
I believe it has been sent already (?) but don't quote me on that.
Just so you know.. I THINK there will be additional actions or at least announcements coming out about the amendments? Hope that helps.. and sorry I don't have more details for you!!
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Just so we have both sides of the issue: Here is where you can read the LDF letter to Dr. Gerberding about the new definition. http://www.lyme.org/cste.pdf
I am not in support of either at this point. I haven't read the original. Ann - OH
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[kiss]](graemlins/kissing.gif)
![[Roll Eyes]](rolleyes.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic