July 22, 2012
• Hearing Significance
The 2 hour July 17, 2012 hearing, Global Challenges in Diagnosing and Managing Lyme Disease - Closing Knowledge Gaps, was held on July 17, 2012 in Washington, DC. The significance of the hearing is that it is the first time Congress has looked at the global implications of Lyme disease and chronic Lyme disease, and focused on the science and putting patients first. Witnesses gave testimony about how policies and actions by government agencies such as CDC and NIH and of the Infectious Diseases Society of America
(IDSA) have prevented research on chronic Lyme disease from moving forward and have hindered patient diagnosis and treatment. Solid science was presented for the record showing persistence in animal studies and cutting edge testing for Lyme was examined.
• Brief Summaries of Oral Testimonies
Congressman Christopher Smith opened the hearing with a lengthy statement about the problems he has heard about from Lyme patients about the inability to be diagnosed and treated and the role of federal agencies and also of the Infectious Diseases Society (IDSA) in the controversy surrounding Lyme. He also mentioned that Lyme Disease Association President Pat Smith alerted him to the problem about 20 years ago and he went through the history of federal efforts he has mounted to obtain monies and research and an advisory committee, the latter effort he likened to his success in autism which he was able to have passed with much less difficulty that Lyme. He introduced:
Stephen Barthold, PhD, Distinguished Professor, School of Veterinary Medicine, University of California, Davis who spoke about his long career in Lyme research, in particular, his animal studies. He spoke about the contentious nature of the Lyme field and the persistence of Borrelia burgderferi, the organism that causes Lyme.
Raphael Stricker, M.D., Vice President, International Lyme and Associated Diseases Society (ILADS) who is a clinician with 2,000 Lyme patients from all over the world. He discussed the lack of knowledge of some doctors as an impediment to diagnosis and treatment and the need for national protection for Lyme treating physicians.
Mark Eshoo, Ph.D., Director, New Technology Development, Abbott who spoke about studies in mice and survival of the spirochete and how existing tests are only antibody response tests and are not really sensitive so many cases are not diagnosed. He talked about his new research using cutting edge technology to directly detect the Lyme bacteria and strain variations as a possible solution to end this controversy.
Patricia Smith, President, Lyme Disease Association, who testified about the problems of patients getting diagnosed and treated and treating physicians being allowed to practice clinical judgment in the treatment of Lyme patients. The problems relate to the two standards of care for Lyme (ILADS & IDSA). She explained how patients and advocates are being unfairly attacked in peer review by some of the same researchers whom the NIH funds and spoke about the broad brushed conclusions of the NIH treatment studies which have incorrectly concluded that no long term treatment helps any Lyme patients. A breakdown in the CDC Lyme surveillance system has led to inconsistent inaccurate counting of Lyme cases nationwide, and a "policy" of NO Lyme in the South and Midwest has contributed to little diagnosis and treatment in that region. She presented the problems of children with Lyme being unfairly characterized as faking illness despite studies showing IQ drop, and that some have committed suicide. Mothers have been charged with Munchausen's and had children removed from the home for getting them treated by licensed physicians. She noted the absence of key Lyme players CDC, NIH, IDSA who now remain part of the problem and need to be brought to the table.
Evan White, who narrated his journey from preteen Lyme patient who got sicker from short-term treatment to one who through years of careful long-term treatment was able to become a lawyer, husband and father. At age 13, he described himself as a "vegetable." He was deteriorated and transformed, weighing 60 pounds. He now described himself as fully recovered and a Lyme advocate. He noted that he testified before the 1993 Senate Hearing on Lyme disease.
Ms. Stella Huyshe-Shires Chair Lyme Disease Action discussed the problem of Lyme in the UK and across Europe, indicating that the actual incidence is probably so much higher in the UK than reported due to so few physicians recognizing the disease. She said there is much polarization in Europe and everyone needs to stop beating the drum and move forward.
She mentioned the influence of IDSA guidelines in Europe and how patients have difficulty getting diagnosed and treated there.
During Q & A, many specific comments were elicited on issues such as biofilms, cell wall deficient forms, school issues, calling for more research, possible use of the new testing methods commercially, how can legislators ensure monies go to research and many other issues.
• Congressional Attendees
Congressman Christopher Smith (NJ) and Congresswoman Bass
(CA) and various Congressional Staff were in attendance for the Committee. Both Congressman Frank Wolf (VA) and Congressman Chris Gibson (NY), who are not Committee members, attended and made statements about the amount of Lyme disease they see in their districts and Congressman Gibson mentioned Lyme being a constituent driven issue (he hosted a forum in NY where Pat Smith was a panel member).
Congressman Gibson also asked questions to the panel. Both legislators thanked Congressman Smith for his leadership in the House on this issue. Congressman Smith acknowledged the role of Senator Blumenthal when he was CT Attorney General in investigating the IDSA and suppression of data, and his role as Senate Lyme bill (S-1381) sponsor. He discussed his own bill in the House (HR-2557). It is not uncommon for only a few members to be present at the hearing. All members receive both written and oral testimonies.
• Actions You Can Take
1) Watch the hearing & read the written testimonies here:
http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=1022:watch-lyme-hearing-a-take-action&catid=174:legislative-session-2011-2012&Itemid=565
or http://goo.gl/OBzbz
2) At this time, the LDA suggests that you send a BRIEF only one page fax to the following US House Representatives thanking them for their role (listed after their name in
parenthesis) in this hearing:
Congressman Christopher H. Smith (NJ), (Subcommittee
Chairman) 202 225 7768 (fax)
Congresswoman Karen Bass (CA), (Subcommittee Member who
attended) 202 225 2422 (fax)
Congressman Frank Wolf (VA) (attendee) 202 225 0437 (fax) Congressman Chris Gibson (NY) (attendee) 202 225 1168 (fax)
If any of these people are your US Representative, you can send an email through their email on their website. Those emails are usually limited to constituents.
3) Urge your 1 US House Representatives and your 2 US Senators to Co-Sponsor the Lyme bills today! For contact information and sample phone blurbs / letters, go here:
http://www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=826&Itemid=131
or http://goo.gl/YVL6x
4) Please forward this to others connected to Lyme and encourage them to sign up for the LDA newsletter by joining the LDA's mailing list here:
http://visitor.constantcontact.com/manage/optin/ea?v=001qvJffTsWrj83ok1BiVhwFg%3D%3D
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