OT: U.S. House Lyme Hearing Great Success

[Guest guest]

 

Subject: U.S. House

Lyme Hearing Great Success

 

July 22, 2012      

                   

               

 

Lyme

Disease Association, Inc. 

 

 

In This Issue

Hearing

Significance

Summary

of Oral Testimonies

Congressional

Attendees

Actions

You Can Take

 

 

 

 

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.

 

  

 

July 17, 2012 Office of Congressman

after the hearing

 

 

Ray Stricker,

MD, Vice President, International Lyme & Associated Diseases

Society;

Lorraine

, JD, MBA, Chief Executive Officer, LymeDisease.org

Jeannine

, Moderator, LymeQuestNJ

Congressman

H. (NJ-4) Africa, Global Health & Human Rights

Subcommittee

V.

(Pat),President, national non-profit Lyme Disease Association,

Inc.(LDA)

Tim Lynagh,

Legislative Director for

 

Brief

Summary 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 (click here).

 

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) 202 225

0437 (fax)

 

Congressman Gibson (NY) (attendee) 202 225

1168 (fax)

 

 

If any of these people above 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!  Click here for contact information and

sample phone blurbs / letters.

 

4) Please forward this to others

connected to Lyme and encourage them to sign up for the LDA

newsletter by clicking on link below.

 

The  LDA is an all-volunteer national

nonprofit, 501 © (3), (has never had employees), dedicated to Lyme

disease education, prevention, raising monies for research, and

patient support. It has been accepted into the 2012 Combined Federal

Campaign (CFC) which recognizes it as an approved charity for federal

workplace giving. It is also a Guidestar.org exchange member,

recognized for its transparency in operations. LDA is an

Environmental Protection Agency PESP Partner and offers LymeAid 4

Kids program for children without insurance coverage.

 

LDA-funded research has been acknowledged in 25

peer review journals to date, and LDA is presenting its 13th Lyme

& Tick-Borne Diseases scientific conference jointly sponsored by

Columbia University in Philadelphia in 2012. The faculty are

comprised of national and international researchers in the field of

tick-borne diseases and attendees can receive Continued Medical

Education (CME) credits. LDA is associated with 45 Lyme organizations

nationwide a loose network called LDAnet, with LDA as the umbrella

organization. They are working together to make a difference for Lyme

patients. In 2009, LDA developed an electronic billboard ad featured

in Times Square, promoting the spread of chronic Lyme disease

throughout the world.

 

For information on Lyme disease  www.LymeDiseaseAssociation.org

 

PO Box 1438

, NJ 08527

 

 

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Lyme

Disease Association Inc.

| PO BOX 1438 | | NJ | 08527

 

>Lyme

Disease Association (LDA)-- two decades dedicated to Lyme & tick-borne

diseases

>Check out the LDA Lyme awareness billboard on Times Square, see it on the

website too.

>Save

the date! 9/29-30/12, Phila., 13th Lyme & Tick-Borne Diseases scientific

conference jointly sponsored by Columbia University

>Lyme Disease Association is now a partner with the Environmental

Protection Agency in its PESP Program!

>Find the automatic doctor referral on the Lyme Disease Association

website! LDA

website

Pat

President

Lyme Disease Association, Inc.

PO Box 1438

, NJ 08527

Toll free info line

(F)

LymeDiseaseAssociation.org

**************************************In

 

bettyg,

iowa lyme activist

42.5 yrs. chronic lyme,  35

yrs. misdx!

 

retired llmd coordinator for 6 yrs.

sending out names, etc.

former mdjunction.com group leader