Historic Move by CT Attorney General to Investigate IDSA Guidelines Process Gives Hope to Thousands of Lyme Disease Patients
Statement from Pat Smith, President, Lyme Disease Association
HARTFORD, Conn.--(BUSINESS WIRE)--The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General's office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.
Although unprecedented, the LDA feels this action is vitally necessary to protect the welfare of chronic Lyme patients nationwide whose treatments have been impacted by the stance taken by the IDSA. Their guidelines deny the existence of chronic infectious Lyme disease and list as ``not recommended'' most of the conventional medical treatments prescribed by physicians as well as alternative treatments often chosen by patients for any Lyme manifestation. Even some nutritional supplements should not be an option according to IDSA.
Clinical guidelines now drive the standard of care, and these IDSA guidelines have already been published on the CDC website. They are being used to deny treatment reimbursement and will have a continued chilling effect on the small numbers of treating physicians, since clinical discretion is not recommended in the guidelines.
The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics, nor do they take into consideration any other professional diagnostic or treatment guidelines such as those published by the International Lyme and Associated Diseases Society (ILADS), which discuss chronic disease diagnostic and treatment modalities. The IDSA also refused to allow patient or chronic disease-treating physician input into the guidelines process through the LDA and ILADS, respectively, although both organizations requested to be a part of the process.
The national LDA and its affiliates Time for Lyme (CT) and the California Lyme Disease Association and ILADS, a professional medical organization, had appealed to the Attorney General on behalf of patients and treating physicians. We are encouraged by the issuance of the CID, and we hope that this will lead to actions that will guarantee patients the right to be treated and support physicians' right to treat using clinical discretion. Contacts
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
HOORAY ! !
WAY TO GO LDA !
Way to go ILADS !
Northstar
[ 17. November 2006, 07:13 AM: Message edited by: northstar ]
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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ConnieMc
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posted
Love it, love it, love it!
I got wind of this yesterday and ILADS also has a supoena to provide all the good info they have. On top of everything else, numerous ILADS docs specifically requested a right to be involved in the process of developing these guidelines, but were excluded. Plenty of evidence of that.
Besides, these IDSA idiots don't treat patients. And they intentionally excluded all the doctors who are out there in the trenches helping us each day. The credible doctors will be those who are out there learning about tick-borne diseases, while trying desperately to find ways to help their patients ... with no help from the government. Since the epidemic has been ignored.
I hope this proves to be a huge slap in the face for the IDSA. The truth will prevail...
Posts: 2276 | From NC | Registered: Oct 2000
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posted
One crusading AG in NY just got elected governor. Maybe CT will follow suit.
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posted
oohhh my goooooooddddd!!!
Posts: 983 | From The sky | Registered: Feb 2005
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robi
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posted
crying again ........... this time tears of joy!!
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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And thanks to all the people behind the scenes whose hard work made this happen.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Michelle M
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posted
I just got an all-over chill bump!!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trails
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posted
I just used this news to send out a second reminder to my email list of folks to sign the petition. It has a great and simple explination of why we oppose the guidelines. I am hoping it will spur the slackers into signing!!! Posts: 1950 | From New Mexico | Registered: Sep 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:
The national LDA and its affiliates Time for Lyme (CT) and the California Lyme Disease Association and ILADS, a professional medical organization, had appealed to the Attorney General on behalf of patients and treating physicians.
Thanks to all of you beautiful people who made this possible and THANK YOU GOD!!
Hooray! What appears to be some progress!
Don't anyone stop acting up yet, our voices need to be even louder right now !
Keep fighting, yelling, stomping your feet and screaming and KEEP PRAYING!! Come on people, LET'S MAKE SOME NOISE!!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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klutzo
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Member # 5701
posted
Marvelous! Does anyone have contact info so we can email this wonderful AG in CT and thank him for helping us? Klutzo
P.S. I hope the rate of infection will not have to get as bad as it is in CT before other AGs take action.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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NP40
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posted
First they ignore you, then they laugh at you, then they fight you, then you win.
- GandhiPosts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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If anybody knows well the legal system, how this investigation from Connecticut State relates to the rest of us living in other states?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I just knocked half the stuff off my very cluttered desk when I threw my arms into the air in a big whoop!
Perfect timing!
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Michelle M
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posted
quote:Originally posted by Areneli: ?????????????????????????????????????????????
If anybody knows well the legal system, how this investigation from Connecticut State relates to the rest of us living in other states?
Well, it means an Attorney General of an entire STATE has questioned, even challenged, the IDSA Guidelines.
It means we're not the only ones who smell a rat.
It means a lyme-endemic state with a HUGE lyme disease problem has taken a stand -- the RIGHT stand.
In so doing, the IDSA will be forced to answer - to ante up.
They've NEVER been forced to do that before. Certainly not by US.
But by a force with the power and authority of a state government behind it? You bet.
The findings will be shared. You can bet on that too.
It's my hope the IDSA will be discredited, their Guidelines withdrawn, and we will make huge strides by this investigation.
Maybe it's just the beginning of a re-education for mainstream medicine, which has long been twisted by the IDSA with regard to lyme disease, with inevitable trickle-down to the CDC.
We all win.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tdtid
Frequent Contributor (1K+ posts)
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posted
Cheryl,
Thank you for drawing this to our attention.
Following the pack with a positive email to the Attorney General.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Aniek
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posted
quote:Originally posted by Areneli: If anybody knows well the legal system, how this investigation from Connecticut State relates to the rest of us living in other states?
It will have no legal holding on other states, but it will impact the reputation of IDSA and the guidelines.
It may also encourage other states or the federal government to take action, depnding on the findings.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Marnie
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posted
Up...and thank you sent to the above.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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Vermont_Lymie
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Member # 9780
posted
At last, some intelligent and correct action on this! Must thank the CT AG for standing up to the insurance industry flacks on behalf of sick people.
Cannot wait until the shoddy rationales and justifications that the IDSA use to come up with their discriminatory and highly harmful recommendations are exposed.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Thanks for the news, Cheryl! And way to go LDA and ILADS: really creative strategy!!!!!
I looked up the good man & AG Blumenthal:
Connecticut Attorney General Richard Blumenthal (D)
Attorney General Richard Blumenthal was first elected in 1990 and was re-elected by more than a two-thirds majority vote in 1994. In 1998 he was re-elected to an unprecedented third term, making him the longest serving Attorney General in Connecticut history.
He is a graduate of Harvard College (Phi Beta Kappa; magna cum laude) and of Yale Law School, where he was editor-in-chief of the Yale Law Journal.
From 1974 to 1975, he was a law clerk to Justice Harry A. Blackmun of the U.S. Supreme Court. He then served as administrative assistant to U.S. Senator Abraham Ribicoff. From 1977 to 1981, he served as U.S. Attorney for Connecticut. In 1984, he won election to Connecticut's House of Representatives and in 1987 he was elected state Senator. From 1981 to 1990, he also practiced law, specializing in litigation. He also served as chairman of the Citizens Crime Commission of Connecticut.
As Attorney General, he has personally appeared at trials and conducted appellate arguments to win cases involving Connecticut's landmark welfare reform and assault weapons ban, a hostile takeover of a major Connecticut corporation, municipal bankruptcy, a hospital closure, and other significant issues.
He enlisted and served in the U.S. Marine Corps Reserve and was honorably discharged with the rank of sergeant.
He currently serves as chair of NAAG's Antitrust Committee and has served on the Consumer Protection Committee, Gaming Working Group, and Automobile Subcommittee and Telecommunications Subcommittees.
WHAT A GUY!
Smiling for the first time this week- Dilly
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lymednva
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posted
Great news!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Cheryl
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lymewreck36
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Member # 4395
posted
I just sent the following email to R. Blumenthal of CT.
Dear Attorney General Blumenthal:
I want to thank you for taking a stand to help the hoards of chronic lyme patients who cannot get treatment.
I lived in CT from 1998-2005. I was infected before I came to the state but didn't know it. I was infected twice in CT before getting a diagnosis, by people whose education make them supposed experts in the field. But their thinking was so clenched by the ISDA, they could not see an acute case of lyme right before their eyes. They would not diagnose me without a positive test result.
I even said to my children's pediatrician who commented negatively on the extended antibiotic use from the lyme doctors, that I could bring in to her an annotated bibliography of peer reviewed medical literature demonstrating the persistence of lyme past the conventional treatment. Her comment was, I could bring it in if I wanted to, but she would not read it. And she was a good doctor.
All the doctors put their faith in the ISDA, they are completely in the dark regarding the Deerborn Conference in 1994, the lymrix failure and the potential for lawsuits that opened up for the people who now sit on the ISDA board, the people who have a vested interest in make sure no one believes in chronic lyme.
I happen to know you are informed regarding lyme, and that you have personally helped lyme patients receive insurance coverage from extensive treatment. You did this for me when I lived in CT. You assisted me in going after my insurance carrier and getting an expensive month of IV rocephin covered.
For this, let me say again, THANK YOU.
I still struggle with this disease, which infected the rest of my family, three children and husband, while we lived in CT. They went undiagnosed for several years too, and now are very chronic.
It is a life time of medication, when it could have all been prevented from happening.
God Bless you in all your endeavors,
Mary Al-Akhdar Alabama resident Disabled
Posts: 1034 | From North Carolina | Registered: Aug 2003
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I REALLY REALLY Believe we should all, if possible, THANK Connecticut State Attorney General Richard Blumenthal via email or phone....every action helps!
Posts: 30 | From conn. | Registered: May 2006
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posted
this is terrific!
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
HIP HIP HOORAY RICHARD! I just him my email too.
Before our election, I HAND-DELIVERED THE NEW 06 IDSA GUIDELINES to Iowa's ATTORNEY GENERAL DEM. TOM MILLER! Just asked him to read after the election; which I'm sure he has by now.
My suggestion is to send the NEW IDSA guidelines to ALL 48 OTHER STATE ATTORNEY GENERALS for their info and action!
This way they can be on top of things when hello hits the fan with Conn. AG taking IDSA ON! GO RICHARD!! We support you.
This is a must to send Richard a thank you even if it's just a BRIEF one!
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I'd also like to suggest that we hold ourselves back from contacting the CT AG in this regard. The folks at the LDA, ILADS and CALDA have worked really hard to engineer this and until they suggest what we should do we could harm their effort and waste the time of the AG's office. In the meantime, taking all the actions Pat Smith has put forth and getting friends and family to do the same would ensure that we're consistent with LDA, ILADS and CALDA's plan.
Cheers! Denise
Am told by those in the know that Lorraine Johnson deserves major kudos for making this happen. She's made tremendous personal sacrifices in order to facilitate this move.
Posts: 261 | From San Mateo, CA | Registered: May 2005
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I am celebrating along with everyone else! What amazing news!
I have gone ahead and send a letter to the attny. gen. Here's a copy:
To: Attorney General Blumenthal, State of CT.
Dear Mr. Blumenthal,
I can't begin to capture the sense of elation I felt today when I read the news that you were issuing a CID re: the IDSA's recent guidelines. The elation springs from a desperate desire for JUSTICE in response to the terribly unjust actions by the IDSA (and their possible collusion with insurance companies). It is also springs from a sense of hope that the treatment that has given me my life back will not be denied by my insurance carrier.
My husband and I were residents of CT. in 2000-2001 while he got a graduate degree at Yale, and I worked as a social worker in Bridgeport. This is where I got Lyme disease. I was not diagnosed properly until 2002 in California, and had to see at last 15 doctors before I was finally tested. Because of the long-lapse between onset and diagnosis, I have needed long-term treatment. The difference antibiotic treatment makes for me is GIGANTIC in terms of functioning and pain levels. Without antibiotics, I would be in bed, completely debilitated and in extreme pain.
An outrageous parallel can be drawn from these recent guidelines: If the IDSA were to respond to the AIDS community in the same way they have just responded to the Lyme disease community with these guidelines, their message would be summed up in this way:
"Sorry folks, anti-virals are not a cure. The symptoms you are complaining about after your one month course of antiviral treatment can not be caused by the HIV virus. They are caused by some unknown immune reaction which we call the Post AIDS Syndrome. Even though many patients have reported improvements with longer term courses, these drugs are not proven to be a cure, and in fact, can be dangerous. Therefore, we advise doctors and patients against this"
So, THANK YOU, THANK YOU, THANK YOU!!! I realize this is a huge step you are taking, considering that CT is the insurance capital of America. I deeply respect the integrity you have shown by taking this step.
I wish I could convey my sense of gratitude more keenly. Please let me know if I can help in anyway.
Theresa Hanneman Boer Menlo Park, CA.
Posts: 364 | From California | Registered: Sep 2005
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bettyg
Unregistered
posted
quote:Originally posted by DeniseS:
Am told by those in the know that Lorraine Johnson deserves major kudos for making this happen. She's made tremendous personal sacrifices in order to facilitate this move.
Denise, sorry, but who is Lorraine Johnson and from which state? New name for me, and I've been active since coming on this board.
Theresa/anneke; outstanding letter! KUDOS to you!
Thank you LORRAINE JOHNSON, whoever you are! Can anyone/Denise tell us her story please?
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posted
Thank you for posting about the Connecticut attorney general. He appears to have a great background. I just sent off my letter thanking him for agreeing to investigate the IDSA guidelines.
I concluded my communication by saying the fate of the world hangs in the balance now -- for people and animals everywhere. We are in danger of losing life as we know it on this planet. We have no choice but to focus on the challenges of these diseases and try to solve them before they dissolve us.
[ 17. November 2006, 02:32 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Betty, Lorraine Johnson helps run CALDA and she is the associate editor of the Lyme Times.
So now should we all send thank you letters to her too?!
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
How about this..
I'll start a new post.. and it will be just for thank you's to all the folks behind the scenes. Then we can send them the link... and all will be covered.
posted
Robin, thanks for informing me who Lorraine is!
TC, great idea to start a THANK YOU THREAD to all those busting their butts on behalf of ALL LYMIES nationwide! KUDOS so NO ONE IS FORGOTTEN!
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