IDSA Hearing Report from National Capital Lyme....

[Guest guest]

National Capital Lyme &

Tick-Borne Disease Association

 

 

 

 

 

IDSA Guidelines Review Panel Holds Historic Meeting

National Capital Lyme & Tick-Borne Disease Association would like to

thank everyone who cooperated and contributed to the effort to bring attention

to the IDSA Guideline Review Panel last month. Working together,

independent Lyme groups and their members, contacted local media, conducted a

nationwide Twitter chat and spread lime green ribbons around cities and towns

across America. Thank you all for your time and energy and a special

thanks to Trish McCleary of Sturbridge Lyme Awareness of Massachusetts for

advice and guidance on structuring the ribbon campaign.

 

As you all should know by now, on July 30th, the IDSA (Infectious Disease

Society of America) held its anticipated Guideline Review Panel in

Washington, D.C., in a small room in the Ronald Reagan Building. The nine

panelists focused intently on the task at hand--to hear the 18 presenters

during

a full day of hearings--from 8 a.m. to 5 p.m. The IDSA created the new

panel to review its Lyme treatment guidelines as required in the 2008

settlement agreement in an antitrust lawsuit brought by Connecticut's Attorney

General Richard Blumenthal. Lorraine Johnson posted an informative summary

on the background of what led to this event, and all Lyme sufferers from

across the county are grateful for the effort she put into bringing this

about. Read her account here:

_http://www.lymedisease.org/news/lymepo'>http://www.lymedisease.org/news/lymepolicywonk/179.html_'>http://www.lymedisease.org/news/lymepo'>http://www.lymedisease.org/news/lymepolicywonk/179.html_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.lymedisease.org/news/lymepo'>http://www.lymedisease.org/news/lymepo

licywonk/179.html)

 

Monte Skall, Executive Director of The National Capital Lyme and

Tick-Borne Disease Association (NatCapLyme) was fortunate to have been selected

as

one of the invited guests seated in the Hemisphere A Room to witness the

hearing. “As I listened and watched the presenters & panelists, I could

not help but think that we were finally getting our voice heard in a

creditable way for the first time†she said. “The content of the

presentations

held no new surprises – it was the atmosphere in the room that was

different. We were finally given the opportunity to express our point of view

with

the dignity we all so rightly deserveâ€.

 

 

 

 

Tina Garcia did a wonderful job representing Lyme patients in her

presentation to the panel. The panelists represented a broad cross-section of

interested parties; including patients, Lyme-treating physicians and Lyme

research scientists. Speakers addressed questions about the adequacy both

of the guidelines and their supporting research. Scientific evidence

supporting the use of long-term antibiotic treatment for Lyme was presented,

frequently to applause from a viewing room across the street in the J.W.

Marriott Hotel.

 

ILADS (International Lyme and Associated Diseases Society), a physician

education organization, set up a viewing site and media recording room in

the Marriott, with help of NatCapLyme. Attending the Marriott site were

Lyme patients and advocates from the DC area and the East coast. Some

traveled from New York and Pennsylvania to be present at this historic time.

Throughout the day ILADS recorded interviews with doctors and conducted a

twitter-chat with people across the country about what was happening in the

hearing. Reporters from every major TV station stopped by the media room to

interview doctors and patients.

 

 

 

Outside on Freedom Plaza, between the Marriott and the Reagan Building,

NatCapLyme members set up a large five-foot tall lime green bow where they

passed out educational literature about Lyme disease to hundreds of people

walking by.

 

 

The previous night, members had tied lime green ribbons on trees and lamp

posts in front of media stations, along major thoroughfares, and in area

communities. NatCapLyme and Lyme groups from across the country conducted

a national ribbon campaign to bring attention to the hearings, and many

national and local press reports mentioned the ribbons.

 

The IDSA website at _www.idsociety.org_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://ww

w.idsociety.org/) provides a list of the speakers and a recording

of the event which will remain on the site for a

year. & Dr. Carol Baker, who presided over the panel, stated that she

expected the panel's report to be available in about six months.

 

Here are links to local coverage of the hearings:

ABC WJLA- TV

(Washington):_http://www.wjla.com/news/stories/0709/645177_video.html?ref=newsst\

ory_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.wjla.com/news/s

tories/0709/645177_video.html?ref=newsstory)

 

CBS WUSA-TV (Washington)

_http://www.wusa9.com/rss/local_article.aspx?storyid=89167_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.wusa9.com/rss/local_article.

aspx?storyid=89167)

 

Fox 5 (Washington) -- _http://www.myfoxdc.com/_

(http://click.icptrack.com/ic

p/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=241665 & admin=0 & destination=http:/\

/www.myfoxdc.com/)

 

Montgomery County Gazette

_http://www.gazette.net/stories/07292009/takonew190427_32536.shtml<

/FONT>_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.gazette.net/stories/07292009/takonew1

90427_32536.shtml)

 

Fairfax County Times:

_http://www.fairfaxtimes.com/news/2009/jul/28/residents-grapple-lyme-disease

/_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.fairfaxtimes.com/news/2009/jul/28/r

esidents-grapple-lyme-disease/)

 

Here are links to national coverage.

 

Newsweek (Before hearing)

Lyme Time in D.C.: Unraveling How to Best Treat the Disease

_http://blog.newsweek.com/blogs/thehumancondition/archive/2009/07/30/lyme-ti'>http://blog.newsweek.com/blogs/thehumancondition/archive/2009/07/30/lyme-ti

me-in-dc-unravelling-how-to-best-treat-the-disease.aspx_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & dest

ination=http://blog.newsweek.com/blogs/thehumancondition/archive/2009/07/30/

lyme-time-in-dc-unravelling-how-to-best-treat-the-disease.aspx)

 

Good Morning America

_http://abcnews.go.com/GMA/MindMoodNews/story?id=8205087'>http://abcnews.go.com/GMA/MindMoodNews/story?id=8205087 & page=1_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admi

n=0 & destination=http://abcnews.go.com/GMA/MindMoodNews/story?id=8205087'>http://abcnews.go.com/GMA/MindMoodNews/story?id=8205087 & page

=1)

 

NBC-4 STORY

_http://www.nbcwashington.com/news/health/Alexandria_Teen_s_Broadway_Dr

eams_Interrupted_by_Lyme_Disease_Washington_DC.html_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination

=http://www.nbcwashington.com/news/health/Alexandria_Teen_s_Broadway_Dreams_

Interrupted_by_Lyme_Disease_Washington_DC.html)

 

_Lyme: What's The Right Course?_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.cour

ant.com/news/breaking/hc-lyme-idsa-0730.artjul30,0,188756.story)

Hartford Courant - Hartford,CT,USA

Dr. Eugene Shapiro, a Yale School of Medicine professor and a member of

the panel that wrote the 2006 guidelines, will present evidence today that

treating

 

ABC in Philadelphia

_http://abclocal.go.com/wpvi/story?section=news/health'>http://abclocal.go.com/wpvi/story?section=news/health & id=6937488 & rss=rss-wpvi-a\

rticle-6937488_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://ab

clocal.go.com/wpvi/story?section=news/health & id=6937488 & rss=rss-wpvi-article

-6937488)

 

 

 

 

 

 

 

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National Capital Lyme & Tick-Borne Disease Association

_natcaplyme_ (natcaplyme)

_www.natcaplyme.org_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://www.natcaplyme.org/)

Phone & fax: 703-821-8833

 

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Any information provided is for the reader’s own evaluation and is not

offered as and should not be considered medical advice. A licensed

physician should always be consulted when considering medical decisions and

nothing herein may be used in place of advice from your personal physician or

other healthcare professional. Links to other sites are provided for ease of

research only. Information on those sites is the product of the website

author and represents the opinion of those who publish the sites and does

not necessarily reflect the opinion or judgment of the National Capital Lyme

& Tick-Borne Disease Association

 

Visit the NatCapLyme Community to read and comment on our messages to

members by _Clicking Here_

(http://click.icptrack.com/icp/relay.php?r=16051687 & msgid=287906 & act=DU4O & c=2416\

65 & admin=0 & destination=http://community.intellic

ontact.com/p/natcaplyme)

 

 

 

 

 

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