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Federal TBD Working Group Reports
May 10,2018
Brief Summaries
1. Report of the Disease Vectors, Surveillance, and Prevention Subcommittee to the Tick-Borne Disease Working Group
1. Report of the Disease Vectors, Surveillance, and Prevention Subcommittee to the Tick-Borne Disease Working Group
It is very difficult, if not impossible, to summarize the entire contents of a 166 page report in a couple of paragraphs. Therefore, I would encourgae those who want to know more to read it for themselves.
We have our best and longest serving Lyme patient advocates in this group, including the leaders of two national organizations- LymeDiseaseAssociation.org (Pat Smith- President) and LymeDisease.org (Phyllis Mervine- President).
Had they not been appointed and the report had come from the IDSA and CDC officials only, as they have in the past, this report and project would have been a total disaster.
Below are three quotes that I've randomly selected to share as examples of their fine work. I am absolutely positive statements like these would not have been included had our advocates not been there pushing really hard for all of us. I am so very proud of them!
The amount of work they have accomplished in this short period of time is incredible. We owe these volunteers a sincere debt of gratitude.
1. "Lyme disease testing, which should be the foundation of the Lyme disease surveillance system, is more than flawed—it is dangerous.
From the decision at the 1994 Dearborn conference to base the surveillance case definition on a subset of Lyme patients with early Lyme disease and arthritis to the FDA’s warning healthcare professionals against using any but FDA-approved test kits, the government’s position has doomed many patients to a life of pain and misery.
Without a positive test, doctors won’t diagnose them; without a diagnosis, no one will treat them. Without a positive test, they are often not counted for surveillance purposes."
2. "Sixty-one percent (61%) of respondents indicated they were denied a diagnosis for Lyme at least once due to a negative WB blot by CDC surveillance band criteria. Physicians who diagnose such patients risk collegial censure and disciplinary action by state medical boards, who act as enforcers.
Laboratories reporting results that don’t conform to the government guidelines risk their licenses and reputations. This situation must be fixed."
3. "The issue of surveillance is further complicated by the case definitions being so restrictive that individuals in states that are now referred to as low incidence have significant difficulty getting diagnosed/treated, as they are told by physicians there is no Lyme there—based on CDC surveillance.
An analysis by LymeDisease.org’s MyLymeData (MLD) compared the numbers of cases reported by CDC with numbers of cases enrolled in MLD state-by-state. In states not considered by CDC to be endemic, MLD cases surpassed those reported by CDC, and the map created for the data suggests a broad pattern of underreporting by CDC of Lyme in the South and West."
Remember, this is just a small sampling of the many points we all want to make known. In my opinion, the entire report is excellent! We could not have asked for anything better!
Additional Summaries Will Be Posted As Soon As Able...
Happy Mother's Day!
Lucy Barnes
May 13, 2018
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