Earlier this year, Lyme patients, the New York State Coalition for Lyme and Tick-borne diseases, and the Lyme Disease Association/LymeDisease.org, joined by 57 Lyme groups from across the nation sent letters to Congress expressing their concerns regarding the IDSA guidelines review process. In response the House Bipartisan Lyme Caucus sent a letter to the IDSA and included both the NYS Coalition letter and the Lyme Disease Association/LymeDisease.org letter.
The House Lyme Disease Caucus Co-Chair Congressman Christopher Smith (NJ-4) has released a letter from the Infectious Diseases Society of America (IDSA) regarding its new Lyme Guidelines.
History: LDA led the effort to get 57 groups signed on to a letter expressing concerns about the proposed IDSA Guidelines Development process which was sent to the Caucus. (Click here to read letter)
As a result, the Caucus sent a letter (Click here to read letter) expressing concerns and transmitted the LDA group letter to the IDSA. The IDSA quickly responded to Co-Chair Congressman Chris Smith that it would extend its time for input into the process by 15 days─ a concern expressed by the groups.
Update: Late last week, the Caucus received a letter (Click here to read letter) from the IDSA/AAN/ACR─ the 3 groups partnering in the new Lyme disease guidelines' development─ addressing the issues which were raised by the Caucus and LDA group letters. . .
I couldn't copy it, but the 2nd to last paragraph of their response is very important.
If that is true, why are Lyme Dr's at risk of losing their license and insurance cos denying payment?
Makes me want to copy that letter and send in to insurance co with appeal when they deny a claim.
Posted by no_lyme_in_florida (Member # 5537) on :
I thought that paragraph was also very important. Here it is:
"Lastly, the 2006 IDSA guidelines and the new IDSA/AAN/ACR guidelines are assessments of current scientific and clinical information provided as an educational service and do not mandate any particular course of medical care.
Guidelines should not be considered inclusive of all proper treatments, methods of care, or as a statement of the standard of care.
In all cases, the selected course of action should be considered by the treating provider in the context of treating the individual patient. Use of the guidelines is voluntary."
Breaking up this paragraph for easier reading for many here -
[ 06-03-2015, 04:52 PM: Message edited by: Robin123 ]
Posted by A.G. (Member # 44713) on :
Thanks for posting it, no lyme.
Posted by Robin123 (Member # 9197) on :
Well, well, well - what weight does this letter carry?
Posted by Abxnomore (Member # 18936) on :
Very interesting that they say that the use of the guidelines are voluntary!!! Posted by Rumigirl (Member # 15091) on :
Yes, but these same guys go up against patients for the insurance companies!! And they take part in the state Medical Board hearings against LLMD"s. So they "talk out of both sides of their mouths."
Barbour was on NPR today talking about Bb, because he has a book out. I was swearing at him, talking to the radio! And he isn't even the worst of them, but one of them.
He kept saying that he was the co-discoverer of Bb, which surely made Willy turn over in his grave. What hubris!
Posted by Robin123 (Member # 9197) on :
We should all download copies of the letter and take it with us to regular doc appts! "Here, thought you might be interested in this! So thoughtful of them to consider our right to choose!"
I wonder if it's a sign that all the collective work we're doing is getting to them? I hope.
In the meantime, I strongly encourage all of us to speak the truth to the docs and do not allow them to snow us anymore with the dumbed-down version of what's going on with these illnesses.
We have as much right as anyone who's ill to be recognized and treated properly so that we can recover as much of our lives as possible.
I am never silent anymore in doctor offices. I also let them know that they, their family, their pets, their friends and anyone they know could get this, so I actually take a more personal stance with them now than a medical professional one, which is an interesting switch to make with doctors - to make it more personal.
I saw that one night when I was at the ER and I was discussing our latest report of someone here reporting they got reinfected in a dogbar, and the physician got a worried look on their face and said they were going to be walking a dog the next week.
Immediately I switched to petcare and prevention talk and it was a productive conversation.
Posted by A.G. (Member # 44713) on :
They may talk out of both sides of their mouth, but this is a signed letter from the President of the IDSA, the President of the American Academy of Neurology and the President of the American College of Rheumatology stating to Congressmen the above statements.
Change comes very slow. But I am very glad to see that paragraph.
Posted by Robin123 (Member # 9197) on :
Maybe they can see the handwriting on the wall, with Congress getting interested, and certainly many Congressional and state reps well aware of what's happening?
Let's get noisier! Go, team!
Posted by A.G. (Member # 44713) on :
quote:Originally posted by Robin123: Maybe they can see the handwriting on the wall, with Congress getting interested, and certainly many Congressional and state reps well aware of what's happening?
Let's get noisier! Go, team!
Agreed! They surely must feel Congress breathing down their backs.
Posted by A.G. (Member # 44713) on :
I wonder if they didn't realize that their letter would be released?
Posted by KarlaL (Member # 29631) on :
Patients and advocacy groups should use this weak response from the IDSA to request a Congressional hearing. How else can we use this statement to keep the heat on the IDSA?
I have a few concerns that jumped out at me.
Why no representation from advocacy groups?
IOM recommendations:
"Patient and public involvement should be facilitated by including (at least at the time of clinical question formulation and draft CPG review) a current or former patient and a patient advocate or patient/consumer organization representative in the GDG."
In terms of the number of members with "conflicts of interest" the IDSA is claiming that since less than half of the panel members have conflicts of interest that this is in keeping with the IOM recommendations. This assertion could be easily challenged. Is less than half the same as a "minority"?
IOM recommendations:
"Members with COIs should represent not more than a minority of the GDG."
They are also claiming that members have significant experience treating patients at all stages of Lyme disease. This could also be challenged, thou it is more difficult to prove.
Concerning the statement that the IDSA is claiming that their guidelines do not constitute a "standard of care". I agree that this statement shows that they feel that they are being backed into a corner.
No matter what the IDSA says, their guidelines do meet the federal definition of "medically accepted standard of care" that Lorraine Johnson has been promoting, just as the ILADS guidelines do.
Does this statement really mean that insurance companies can't use them to deny treatment or that medical boards can't use them to discipline doctors?
KarlaL
Posted by Robin123 (Member # 9197) on :
If they are going to stand by this letter, then it seems to me that it might open up the possibility of lawsuits against insurance companies and medical boards, which I think would be great, and high time, at this point, re all the damage they've been doing to the public.
Posted by Tincup (Member # 5829) on :
IDSA has always claimed their guidelines are voluntary, but no one believes it because they are used, even last time before they were published, as support for insurance denials. And used to nail our doctors and threaten other doctors into following them. This letter does nothing to change that.
It is stated in the actual 2006 IDSA guidelines, on the first page.
"The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances."
Here are some of the other look-a-like letters IDSA has written to Congress, state legislators, etc. with one even sent to Obama and McCain before one of them became President.
They were getting a head start in sliming us. How sweet those little monsters are.
And no, they are not standing by this letter, not worried, scared, etc. In fact they read these posts and laugh at them.
Posted by Robin123 (Member # 9197) on :
Thanks, Tincup, for your input here - I was wondering. Still, we have every right to stand up to them in their offices. After I do that, I go on to talk to their staff, who can't walk out! Enough of this criminal standing down on recognizing and treating people's illnesses.
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