U.S. House Lyme Hearing Great Success [LDA]

[Guest guest]

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. -----

Forwarded Message ----To: LymeInfo Sent: Mon, July 23, 2012 4:27:19 PMSubject: [LymeInfo] [pr] U.S. House Lyme Hearing Great Success [LDA]

U.S. House Lyme Hearing Great Success

Lyme Disease Association, Inc.

PO Box 1438, , NJ 08527

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 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 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:

Barthold, PhD, Distinguished Professor, School of

Veterinary Medicine, University of California, 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.

, 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 (NJ) and Congresswoman Bass

(CA) and various Congressional Staff were in attendance for

the Committee. Both Congressman Wolf (VA) and

Congressman 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 was a panel member).

Congressman Gibson also asked questions to the panel. Both

legislators thanked Congressman for his leadership in

the House on this issue. Congressman 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 H. (NJ), (Subcommittee

Chairman) (fax)

Congresswoman Bass (CA), (Subcommittee Member who

attended) (fax)

Congressman Wolf (VA) (attendee) (fax)

Congressman Gibson (NY) (attendee) (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

or http://goo.gl/ntWtJ