Topic: The MILLION Dollar IDSA Campaign- STOP THEM
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
As soon as possible!
1. Call and email YOUR Maryland State Senator and tell them to vote NO to HB 836. Feel free to share your story and give them the what-for (nicely). Just write "NO to HB 836" on your email and send it.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The LONGER version....
KILL THE BILL- NOT THE PATIENTS!!!!
We DON'T Support the MILLION DOLLAR IDSA CAMPAIGN!
A Maryland legislator recently tried to address Lyme disease without first contacting support groups, patients or their doctors in advance to determine if the offer to help actually was HELP, rather than an instant nightmare or an IDSA and Health Department plan to utilize a lot of tax payer's money.
And once again, in spite of promises made by certain legislators to support our patients, they flip flopped, making the situation for us MUCH worse.
The Lyme Disease Public Awareness Bill (HB 836) introduced by Delegate Montgomery from Montgomery County was introduced with wording that makes the bill dangerous to residents exposed to ticks and Lyme disease.
By passing this bill, the legislators (LAW) are directing the Department of Health and Mental Hygiene to send out the "latest consensus guidelines" to all health care professionals- i.e., the IDSA guidelines, along with anything else they want to include.
The IDSA Guidelines are EXACTLY what we have been fighting for years!!!
The bill's `fiscal and policy note' allocates just over 1.3 MILLION dollars for the DHMH to send out the IDSA guidelines to health care professionals and to distribute educational brochures.
This bill looks basically like a million dollar publicity campaign for the IDSA (whose editor and one author are in Maryland).
To note- Lyme patients sent out ILADS guidelines to Maryland doctors across the state and it was accomplished for well under $1,000.00. Educational brochures and literature are already distributed free by the CDC and support groups across the state. So WHY is over a million dollars needed?
Due to the bad wording in the bill (``latest consensus guidelines''= IDSA) we originally wouldn't support it, of course, without an amendment to fix it.
After consulting with legal folks, doctors, politicians, leaders of support groups in several states, and patients, we wrote up an amendment for the original bill, had it approved and nearly EVERY support group in the state, as well as the national Lyme Disease Association, sent in strong written testimony supporting the exact same amendment in order to "fix" the bill.
We were told the amendment WOULD be supported and they had it in the bill! I still have the recorded phone message where Delegate Montgomery said, "This bill will have included in it, National Guidelines Clearing House peer-reviewed."
We just learned that there was a sub-committee meeting over the weekend, and Delegate Montgomery did NOT support the amendment and it was not added to the bill.
In addition, ALL of the Delegates who told us they would support Lyme patients, didn't. The vote on the floor was unanimous to pass the bill without our amendment, with no one standing up for us as they had promised.
So, now we are stuck having to fight ONCE again to save ourselves, our doctors and those who will contract Lyme in the future. Keep in mind, as of last week, Maryland was number ONE in the country with the most reported new cases of Lyme disease so far this year!
So boys and girls, put your helmets on, we are going to war. NO MERCY!
We have to do our best to kill the bill and we have VERY LITTLE time to do it as the session ends soon.
The bill is already in the Senate's Education, Health and Environmental Affairs Committee, the same place our last bill was royally chewed up and spit out two years ago, to the disappointment and disgust of all.
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To help- PLEASE do the following TWO things, and of course, as soon as possible! ~smile~
1. Call and email YOUR Maryland State Senator and tell them to vote NO to HB 836. Feel free to share your story and give them the what-for (nicely).
2. Contact everyone in your email address book (you can forward this to make it easier) and phone book and ask them to do the same. EVERYONE in the state should be concerned, if they have Lyme or not.
Below is a sample letter. Please just send an email saying, "NO to HB 83", if that is all you can do right now. That is wonderful!
Thank you for taking a few minutes of your time for Lyme. We appreciate it and we need your help!
Please vote NO to the Lyme Disease Awareness Campaign Bill, HB 836.
The Lyme Disease Awareness Bill instructs the Maryland Department of Health to disseminate the ``latest consensus guidelines'' to the medical community. These treatment guidelines, written by the Infectious Disease Society of America (IDSA), are totally unacceptable for reasons which include, but are not limited to:
1. The IDSA Lyme Disease Guideline development process is currently under investigation by the government for anti-trust violations, monopolization, and exclusionary conduct.
2. The guidelines do not recommend any antibiotic treatment for chronic Lyme disease.
3. The guidelines recommend against a physician's clinical judgment in diagnosing and treating Lyme disease, thus, many who get Lyme will not be diagnosed or treated properly and will develop chronic Lyme disease.
4. The guidelines recommend against using whole classes of antibiotics, alternative treatments and even nutritional supplements for people with Lyme disease.
5. The guidelines have a history of failing to adequately address the various stages of Lyme disease and tick borne co-infections in humans.
Please don't allow the passage of this bill. It is dangerous to the health and welfare of those with Lyme disease and those who will contract it in the future. Your support in opposing the bill is appreciated.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I KNEW you were going to ask...
If you are from out of state.. I don't care. The more the merrier. If they can't stand by their word... I have NO mercy on them. We need to let them know the whole country is at stake here.. not just one spot on the map.
When they jerk us around, they aren't messing with a new stop sign or an increased property tax. They are messing with people's lives!
Pick a Senator... or two... or ten from our list. Be my guest. We are all so totally worn out and need all the help we can get!
posted
Can I just quick ask for some clarification: the bill you site is HB (House Bill), and Ms. Montgomery is a Delegate (and in the House chamber of the state government), but you request that we contact our State Senators. Can you clarify where the bill is, and whom we should contact? If it is a House Bill, and we contact the Senate, that will do us no good.
Thanks for keeping your eye on this!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
DocJen-
i'm sure Tincup doesn't mind my answering that one, since i'm here-
yes, HR 836 by Del Montgomery et al passed in the the House already. It sits now in the Senate's "sister" Health Ed committee, where it has already had its first reading.
The bill will get 3 readings, getting amended or not along the way. It is then voted on, first in committee then if sent out, to the Senate as a whole.
Hope that helps- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
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Member # 9982
posted
in case this helps someone else-
sent this Email to my state senator:
----------------------
Dear Senator ---:
The House has passed what on the surface is a worthy and innocuous lyme education bill, HB 836.
In actuality, what the bill will do is to codify newly released lyme medical treatment guidelines that are highly controversial, both medically and politically. The guidelines-writing process as undertaken was suspect enough, for example, that Connecticut's Attorney General is currently investigating possible anti-trust violations by the guidelines' writers.
Maryland residents deserve to be aware that another set of nationally recognized and accepted lyme treatment guidelines exist, and in fact are followed by most physicians who actively treat lyme patients.
Please do not allow a bill to pass that will serve to deprive Marylanders of accurate information about and effective treatment of this disabling, even fatal disease, now epidemic in Maryland.
Thank you for your time and attention.
(me)
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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I would think that legislating this sort of government support for treatment guidelines, then putting a sizable allocation of funds behind it would be a precedent for Maryland lawmakers to make (and they should be reminded that this will open the door for every health interest group to request the same...with cash). Just my 2 cents.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
What I really want to know is a list of lobbyists.
Usually I can find this, but I can't turn anything up.
Looked in opensecrets.com to no avail.
I'm betting insurance companies are all over this bill, loving it.
We should be able to IMMEDIATELY and easily access that information, since it is so telling.
However, after an hour of trying, I'm at a loss.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Tincup, what a disappointment and travesty to be betrayed like this re legislation everyone worked on.
How come we never hear anything about who the insurance people are who may be behind all this? Are they totally anonymous?
Posts: 13117 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Announcing a wonderful time saver for all!!!
Our wonderful Harford County Lyme Disease Support Group president was up at 5 AM typing up this list of Senators in the committee where our bill is right now, so we wouldn't all be scrambling around all searching for them.
You can click on the emails she provided and phone numbers are all there too. 800 numbers will not work out of state.. but if you are in Maryland they should.
These are the targets right now... so please feel free to shoot!
Let's get a definate BULLS-EYE!
`````````````````````````````````````````````` EDIT- And good morning California! Our lovely member Melanie took the time to fix the emails so they can be copied and pasted in your email address bar! Here they are! Thanks Melanie!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
MM...
I think we may be ok on that level. So calls and letters would be good now if you are able. Thanks so much!!
Robin...
They aren't out there waving flags.. you are right... but I met some in the committee meetings who were bold enough to come there to "observe" ONLY.
Not to share or help or contribute.. just sit there like a bump on a log soaking in the sun. And pretty rude bumps on a log from what I remember!
But before we totally dump on the insurance industry.. which I always try to run to the front of THAT line to do.. we need to remember our states health department is the BIG road block here. You know.. the ones we pay from our tax money to HELP the residents of the state.
However.. gotta give them a LITTLE break. They don't treat people or even diagnose them.. they only think they should tell others how to do that. Here in Merryland we still fall under the animal division... cause after all, PEOPLE don't get Lyme disease! Uggg!!!
So our lives are depending an animal doctor (the one quit a while back.. so not even sure we have that any more) and the clerical staff.
But hey.. at least our pets aren't complaining. I haven't heard one word out of them about their Lyme problems!
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I did it!!!! I emailed!
I know it's not much but thanks for making it easy enough for me.
(and I sent instructions and copies of what to do to people in my address book that don't come here often or at all)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Thanks, Tinny & Melanie!
I still say:
Follow the money.
Michelle
(Who in polite and respectful tones just emailed the following:) ____________________________________________________
Dear Senators:
Before you is what appears at first blush to be a good lyme disease education bill, HB 836.
However, it will actually cause great harm to lyme disease victims.
It serves, however inadventently, to ratify the recently released IDSA Guidelines for the treatment of lyme disease. Those Guidelines, as most of you know, deny that chronic lyme disease even exists, in spite of dozens of peer reviewed studies documenting the persistence of the disease in the face of prolonged or repeated antibiotic treatment. By passing this bill, the current state of ignorance in the medical profession is guaranteed to flourish -- the exact opposite of the Bill's stated intention.
Almost everyone I have met who suffers from chronic lyme was first misdiagnosed repeatedly by doctors who simply do not know any better. My own diagnosis was MS, though I assuredly do not have MS. My doctor refused to accept that lyme could even be possible in Northern California, and had never heard of the most common of co-infections. This is not an isolated experience but is typical in Maryland and across the entire nation.
The Guidelines which HB 836 craftily attempts to bless are devastating. Their authors, who have been found by the Connecticut Attorney General to have questionable financial incentives, pointedly ignored an entire body of scientific evidence in arriving at their conclusions -- conclusions which, if allowed to stand, will damn generations of lyme victims to continued suffering. Please remember that over half of lyme patients are little children.
Please do not let this bill pass in its present form. I can only imagine how this apparently well-meaning bill aimed at education came to be laden with language guaranteed to perpetuate the suffering already stemming from doctors' misguided reliance on IDSA Guidelines.
Thank you very much for your help.
Sincerely,
Michelle L. Mahood
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You know.. reading your letter.. I can't believe ANYONE would still be standing on that lame IDSA bandwagon.
WAY to go MM! I love it!!!
This part.. "The Guidelines which HB 836 craftily attempts to bless are devastating. Their authors, who have been found by the Connecticut Attorney General to have questionable financial incentives, pointedly ignored an entire body of scientific evidence in arriving at their conclusions -- conclusions which, if allowed to stand, will damn generations of lyme victims to continued suffering."
I think that is my favorite part.. and how sad to know it is so true. Very well written and appreciated.. especially by me.. who needs a pick-me-up this evening.
THANK YOU!!!
Now.. if you want to graduate to Lyme 102...
Yes, TC is pushing her luck here...
You could twix that letter up and send it to the newspaper!
I wrote 6 or so letters yesterday... but am running out of different ways to say the IDSA guidelines suck. Well NICE ways anyhow...
ONLY if you are up to it. My most concern is with being sure you and others are ok. I know how stressful this can be... so do pace yourself. OK?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well darn Dilly..
I was going to ask if you'd share your letter.. and just realized it was here! I am getting lost between emails and posts. So I'm glad you already did it and answered questions for me. Thanks again!
And thanks for all the good work behind the scenes!! Way to go!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Much obliged TC!
But what newspaper?
A Maryland newspaper, p'raps?
Out here where I live in northern California (you know, where there is no lyme), it will be mighty out of the blue, and no one will have any idea what it's on about. They usually only print a letter if the topic has been in a recent article.
Any Maryland residents want to help me out and I'll be GLAD to oblige!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trueblue
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Member # 7348
posted
quote:Originally posted by Tincup: True blue..
You snuck in there probably when I was showering!
In the post I mean.. NOT my shower! Better make that clear. HA!
Ha! Good thing I got my shower in earlier!
Truth be told I don't much enjoy sharing showers; someone is always cold and soapy. Or maybe I'd just been doing something wrong.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
If you are thinking, like many, that a Maryland Bill, this little piece of paper, will have very little, if any effect on YOU...
you may want to rethink that reasoning.
Naively, I use to think this way. When I was first diagnosed in Colorado, one of my physicians told me point blank that they do not report LD cases in Colorado, and that this actually was a good thing for me and others in that state.
WHY? Because by underreporting this disease, it allowed physicians, such as him, more wiggle room to treat as necessary.
Hmmm, that made sense at the time, but now I know better.
Now, I know that by NOT reporting LD cases in CO, other physicians, insurers and the powers that be, have been able to say that it does not exist in CO, and therefore give little if no credence to the many articles, citations, actual statistics and suffering patients that prove otherwise.
WHY? Because they are getting their stats from the CDC, who was not reported to in the first place.
While receiving treatment in North Carolina, I also thought that my physician would always be able to treat as he deemed necessary.
Now, I know better.
I sat there and watched as a board of professionals decided to take that right away from the treating physician and all rights away of choice from many very ill patients. That too, was a little piece of paper that is now severely affecting lives, and not for the better.
WHY? Because they too were using information provided by the CDC that directly reflects the IDSA guidelines.
I also use to think that I could sit snuggly warm in California knowing that our docs here are protected from prosecution for the manner in which they choose to treat. What is protecting them? A little piece of paper that says IF a patient is informed of the two standards of care and opts for either one of them, it is the patient's right to choose.
Now, I know better.
After four continuous years of treatment, and not ever being denied any medicine that my doctors deemed necessary to my protocol, I am now facing denial of a prescription that is medically necessary. This denial is coming from my insurance company, who is citing another little piece of paper that just happens to be a carbon copy of the IDSA guidelines.
So, my friends, we are all connected; by these laws, physicians, insurance companies, and pieces of paper that may help or harm us.
This bill, like others, has the power to set precedence in healthcare education procedures. Once adopted in Maryland, it is only a short jump to being adopted in other states.
If you have been denied proper healthcare, if you have been denied the right to be reported as a CDC stat in your state, or if you have been denied any other sort of understanding of the seriousness of this disease and other tickborne illnesses...
This Maryland piece of paper should be important to you as well.
Below is my letter to the MD Senate.
3-28-07
To Whom It May Concern,
As the Executive Director of The National Lyme Disease Memorial Park Project, I am faced with the heartbreaking role of keeping track of those who have succumbed to the most final devastating effects of chronic Lyme disease and other tickborne illnesses.
In Maryland alone, I am aware of 14 tickborne associated fatalities.
These deaths were not caused only by the lack of treatment, but by the lack of knowledge and the refusal to look beyond one standard of care, the sorely inadequate IDSA ``guidelines'', which forced this standard of non-treatment and arbitrary protocols upon these patients.
Simply put, it is a national disgrace.
Specifically, it has become a disgrace in Maryland with the attempted passing of The Lyme Disease Public Awareness Bill (HB 836) introduced by Delegate Montgomery from Montgomery County.
With the passing of this bill, which implements and sanctions the usage of the IDSA ``guidelines'', all healthcare practitioners in the State of Maryland will now be forced to follow, knowingly or not, what will surely add more names to the already growing list of tickborne associated fatalities.
Re: Please don't be fooled by HB 836 (Lyme), Purported Lyme Disease Bill
Dear Editor:
Pending in the Senate is a wolf in sheep's clothing, a lyme disease education bill, HB 836. While pretending to address lyme education, a small clause was added which rendered it worse than useless -- a political tactic reminincent of Propositions in California, which through insertion of an artful phrase become incomprehensible to voters.
The bill directs dissemination of the "latest consensus Guidelines" for lyme disease treatment. However, these are none other than the notorious and ill-conceived IDSA Guidelines (Infectious Diseases Society of America), which proclaim chronic lyme doesn't even exist, in spite of realms of scientific evidence to the contrary. Indeed, the drafting of these Guidelines is currently under investigation by the Connecticut Attorney General for allegations of violations of antitrust laws and financial conflicts of interest by the authors.
Maryland has epidemic numbers of lyme disease victims who will suffer from the passage of this Bill. It is no service to lyme victims but rather, a campaign of disinformation. Real Guidelines already exist which fairly address treatment and were drafted by the doctors who actually treat Lyme.
Readers tempted to think this Bill is innocuous need to pay close attention, or not unlike the tiny ticks that carry Lyme disease, HB 836 is going to come back and bite us.
Sincerely,
Michelle L. Mahood
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
daum daum da daum daum da daum da daum da daum... daum
That is the graduation song MM! You passed Lyme 101 and now.. Lyme 102! Congratulations!!!!
Another excellent job! A +
And just so you know.. I am even getting emails about your letters and how good they are!!!
Someone even said you were a "masterful letter writer". I must agree!
And you do look awful pretty today too.
Thank you!!! Now if you will.. can you watch the Baltimore Sun to see if any Lyme letters are in there? I don't want to miss that... but am so scattered with bill stuff I don't have the chance to keep up with all the wonderful extras. Like your letter!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Got to thinking...
Emails don't make enough noise. Not in my computer anyhow. They sit there rather quietly most of the time.
I contacted one of the Senators offices and learned today that they had "some" calls about the bill.
I think they need more calls. Especially the Democrats. So... here is a list of Senators... pick one you like.. or two or ten. Girls, boys, favorite hair color, biggest moustache.. whatever.
Just call.
Let them know taxpayers money isn't to be used to promote ONE side of the story... especially when it will destroy lives. Vote NO to HB 836.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Tincup: daum daum da daum daum da daum da daum da daum... daum
That is the graduation song MM! You passed Lyme 101 and now.. Lyme 102! Congratulations!!!!
Another excellent job! A +
And just so you know.. I am even getting emails about your letters and how good they are!!!
Someone even said you were a "masterful letter writer". I must agree!
And you do look awful pretty today too.
Thank you!!! Now if you will.. can you watch the Baltimore Sun to see if any Lyme letters are in there? I don't want to miss that... but am so scattered with bill stuff I don't have the chance to keep up with all the wonderful extras. Like your letter!
Again.. thank you!
Thank you, Ms. TC! I will watch the Baltimore Sun rise!
I used to write for a living. Due to the unreliability of my brain, now I take pictures.
You know what they say: write about what you know.
And boy, do we know.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A side note... different topic.. but all good news welcome...
On the FEDERAL BILL.. we just got another Congressman to sign up to co-sponsor it! That makes 7 out of 8 so far.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
MM.. well so sorry! Missed seeing your response till just now. You'd think I've never used Lyme Net before as lame as I seem here now!
And it is so good to know you writed for a living. See, I can't even speak real well... ha!
Because if you didn't wrote for a living.. I'd be shamed beyond words at my goof off stuff.
YES! Please do watch for the sun to rise. I have a feeling it will.
And do know.. I wish I'd never met you under these circumstances.. but since we've been tossed in the same picnic basket together.. I am glad you are on our side.
posted
The above link from the LDA makes it really easy to call or email. There are even toll-free telephone numbers listed for members of the health committee.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
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Member # 5829
posted
Hey Fight Fire! Good to see you!
I heard you moved to Texas to work on a oil rig as a chef. Hope you are happy there!
posted
Do we really want all of those national policy makers working and living in Maryland to have bugs in their brains from un/undertreated Lyme Disease. Things are bad enough these days!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry to hear that osp. Wish she had all the help she needed.
Ok.. today is the day.
If you haven't contacted the Senators.. you have till noon!!!
Please do!!!
And tell them NO to HB 836.. with or without amendments!!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
IMMEDIATE ACTION NEEDED TO SEE THIS THROUGH:
If you have already called.. we STILL need another call from you.. so hold on!!!
Word is that this is the critical time. We need everyone, everywhere, to call all the Senators in the EHE committee today and tomorrow (Wed & Thurs) to tell them to:
VOTE NO to HB 836- the Lyme Disease Bill
Please call these Senators first, as they are in the EHE committee.
posted
I have been asked to post my two letters (one before Wed's committee meeting, the other one after) here:
I am writing to you as a concerned citizen of another state monitoring the progress of HB 836 in the Maryland legislature, known as the Lyme Disease Awareness Campaign Bill.
I applaud Maryland's initiative in trying to address the growing national Lyme disease epidemic within its own borders. However, the language of the bill instructs the Maryland Department of Health to disseminate the ``latest consensus guidelines'' on Lyme to the state's medical community. This will NOT improve access to health care for Maryland's Lyme patients but will in fact limit patient choice and impede physician education about the intricacies of this complex disease. For that reason, HB 836 should be opposed strenuously.
The fact is, there is a lack of ``consensus'' as to the proper diagnosis and treatment of Lyme disease in America today. Instead, two distinct treatment philosophies exist, one held forth by the Infectious Disease Society of America (IDSA) and the other by the International Lyme and Associated Diseases Society (ILADS). Both the ILADS and IDSA treatment guidelines for Lyme have been published in the National Guidelines Clearinghouse, and both cite reputable scientific studies to support their recommendations. So we find ourselves in the same position as patients with other diseases - the medical community has two published treatment philosophies for Lyme. In the case of prostate cancer, patients are allowed to decide between traditional cancer treatments, surgery, or ``watchful waiting''. The legal principle of medical autonomy states that patients MUST be informed of the risks and benefits of ALL treatment options, so men with a prostate cancer diagnosis are advised about all three choices.
By analogy, Maryland Lyme disease patients should be provided the same opportunity for ``informed consent'' given to prostate cancer patients. Their doctors should inform Lyme patients of BOTH available published treatments for their disease - that of ILADS as well as that of the IDSA. Unfortunately, HB 836 will only recommend the IDSA point-of-view to Maryland's doctors, which will leave both the doctors and the patients in the dark about ALL their treatment options.
Worse yet, the IDSA guidelines are currently the subject of an investigation by Connecticut's attorney-general Richard Blumenthal, who is exploring whether the IDSA committed anti-trust violations, monopolization, and exclusionary conduct in the formulation of these medical guidelines. An article in the Hartford Courant of March 21, 2007 quotes AG Blumenthal as saying that he has uncovered ``conflicts of interest that are credible and powerful'' in his investigation of the IDSA Lyme disease guidelines. Thus they do not deserve an endorsement by the Maryland legislature when such a cloud of suspicion currently hangs over them.
Past history has shown that the IDSA treatment approach to Lyme is quite likely to produce disabling cases of chronic illness that are a burden on society. They recommend against using whole classes of antibiotics, alternative treatments, and even nutritional supplements for people suffering terribly after exposure to Lyme disease. This bizarre state of affairs should NOT become the official policy of any state!
To serve their patients best, Maryland doctors need to be informed of ALL available treatment paradigms for Lyme disease, an infection spreading so rapidly that it will occupy an increasing amount of their time as physicians. Please enable your doctors to exercise their best, most-informed clinical discretion by providing them with ALL the facts about Lyme disease. To that end, please oppose HB 836 - and work with Lyme patients and their experienced treating physicians in drafting better legislation next time!
Thank you for your time and efforts.
And Letter #2:
Dear Senators,
I am writing to you again in opposition to HB 836, the Lyme Disease Awareness Campaign Bill. I encourage you to consider carefully the testimony of Pat Smith of the Lyme Disease Association and Ron Hamlen, Ph.D. in opposition to this dangerous new bill.
Steve Nery of the Star-Democrat just published a wonderfully balanced and accurate description of your current situation with HB 836 in a March 31, 2007 article. In the second paragraph, he notes that Maryland is leading the nation in Lyme disease incidence so far this year (and we have not even reached the summer tick season). You have a serious problem with Lyme disease - as does the rest of the country. Please set a good example for other states by writing new legislation that informs your doctors of ALL the available Lyme treatment protocols published in medical journals, so they can provide MAXIMUM relief to both Maryland residents and out-of-staters seeking Lyme treatment in Maryland, as they are already doing!
As I mentioned before, considerable controversy exists concerning the proper diagnosis and treatment of Lyme and related tick-borne infections, especially when they seem to cause chronic illness (such as I suffer). The Bethesda, MD-based International Lyme and Associated Diseases Society (ILADS) has demanded a retraction of the Infectious Disease Society of America's (IDSA) latest treatment guidelines for Lyme and its associated tick-borne infections for two main reasons: 1) The new IDSA guidelines quote only 405 of the 18,537 medical journal articles available on tick-borne infections, and 2) Some of IDSA's harshest and most restrictive recommendations for Lyme and related diseases are based merely on the authors' ``opinions'' and no medical studies at all! The ILADS feels that the latest Lyme guidelines from the IDSA, like all previous editions, strain the educated reader's credulity as the IDSA authors ignore 98% of the available medical literature on Lyme and related infections and promulgate short-term treatment guidelines that belie the complex and persistent nature of the Lyme bacterium. This misleads and misinforms physicians who are counting on America's infectious disease specialists to equip them to tackle the increasing numbers of tick-borne infections they see in their offices.
Given the obviously unsettled nature of the science of Lyme and the ethical questions raised by Connecticut Attorney-General Richard Blumenthal's investigation of the IDSA's conflicts of interest in keeping the status quo about Lyme nationwide, it does not seem wise for any state to adopt and promulgate the IDSA view of Lyme at this time.
Like the IDSA, the ILADS has published treatment guidelines available in the prestigious National Guideline Clearinghouse. A true public awareness campaign would disseminate information about the controversies surrounding Lyme disease (including the ethical questions surrounding the IDSA) and the treatment philosophies of both medical societies (the ILADS and the IDSA).
Although adherence to the IDSA guidelines is supposed to be voluntary, and another set of published treatment guidelines (ILADS) are available for doctors to follow, dozens of doctors who have chosen ILADS in other states have faced endless investigations and medical board license hearings, in which their livelihood is threatened because they did not conform to the IDSA way of thinking. This, in turn, scares other doctors away from treating complex cases of Lyme - who wants to lose their medical license simply because of an on-going controversy in medical research? Therefore, one of the greatest dangers in Maryland adopting the IDSA viewpoint in HB 836 is that ALL Maryland doctors will be under tremendous legal and peer pressure to ignore their own best clinical judgment and undertreat Lyme, to the detriment of their patients, or else face reprimands from the Maryland state medical licensing committee, which is busy enforcing the controversial IDSA viewpoint!
As Maryland leads the nation in disease incidence, it should also lead by example in providing a true physician education and liberation campaign - educating doctors of this growing threat and liberating them to pick the scientifically-recognized treatment philosophy that works best for their patients.
If you want more information about Lyme in Maryland and nationwide, please contact Lucy Barnes (quoted in the Star-Democrat article), the National Capital Lyme Disease Association (which has a number of Maryland members), or Pat Smith and the Lyme Disease Association (contact information below).
Thank you for your time. I hope that you can understand why Maryland's current situation is of supreme interest and importance to the rest of the nation.
-------------------- I am not a doctor nor a trained scientist. Do not rely upon what I write to diagnose or treat any medical condition.
"Rejoice in the Lord always; again I will say, rejoice!" -- Philippians 4:4
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You guys are great!!! TANKS Berry Mush!!!
Rather than try to write out an entire summary or full update.. I will post bits and pieces of a letter I just sent to the committee tonight. Sorry. I will try to explain more later.. just too tired now. Hope you understand.
Thanks to ALL who have pitched in to help. We ARE making progress!
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Today there was a hearing of the EHE Committee and we send our thanks to Pat Smith, the President of the national Lyme Disease Association based out of New Jersey... and Ronald Hamlen, PhD, a Lyme disease educator from Maryland.
(MY thanks to them- they were wonderful! I've already heard from some of the legislators.. and they were VERY impressed by the talks!)
They were granted special permission to address the committee about a number of serious concerns surrounding HB 836, the Montgomery Lyme disease bill.
I was told that during the testimony provided by the bill's sponsor, it was stated that only ONE Lyme support group had problems with Delegate Montgomery's bill.
I work with local, state, national and international patient and doctor based Lyme disease groups and organizations. Not ONE of these organizations or groups that I have heard from since this bill was presented, support this bill in the current form. Not one.
As a matter of fact, the testimony from all of the patients and groups presented throughout this legislative session were unanimous, as no one approved the bill as written.
There are at least 13 different Lyme disease support groups in Maryland that I am aware of, whose members consist of doctors, nurses, patients, scientists, medical executives, a variety of health care professionals, families, and parents of children with Lyme disease, etc.
There are also a large number of individual contact people across the state who are assisting Lyme disease patients and educating the public and health care professionals, as their health allows.
Not one of these groups or individuals has indicated in any way they support this bill and most have stated verbally and/or in writing that they are adamantly opposed.
The bill has been deemed so harmful it has caught the eye of national Lyme Disease organizations across the country as well, hence the communication from a national representative who has traveled on multiple occasions to try and protect patients in our state and oppose this bill.
My second concern relates to the fact the committee was told that the reason for the one group's opposition was "fear". No where in any of the official written testimony or verbal testimony was the word "fear" used as a basis, especially the only basis, for why we did not want the bill to be passed.
There are many solid science-based, legal, monetary and moral reasons to oppose the bill and they were shared by a number of people repeatedly throughout this process, including today in the committee hearing and throughout written testimony.
I recently sent you a letter with a list of a number of the reasons this bill must NOT be passed.
I sincerely hope you take time to review these reasons, as MANY people and MANY groups have come to the same conclusions and have realized this bill will hurt the patients and residents of Maryland and nation wide and must be stopped.
As one person summed it up at the committee meeting... if Lyme patients and groups are against the bill, there must be something wrong with it.
BINGO!
This bill is dangerous, no two ways about it.
I ask you to trust ALL of us when we ask you to say NO to HB 836.
Thank you for your consideration and what I hope will be a closer look at the situation on the part of the committee members. Please oppose the Montgomery bill, HB 836.
Our Lyme disease support group, SEWILL.org (SE WI & IL Lyme Leagues) is adamantly opposed to HB 836, the Montgomery Lyme disease bill.
Every support group in the country with whom I have spoken is opposed to the IDSA guidelines being adopted for use, AND NOT OUT OF FEAR, BUT OUT OF DISGUST FOR HOW THEY WERE WRITTEN!
Please allow me to educate you briefly, from the patient's perspective.
The reason Lyme patients and groups are not in support of legislation upholding the IDSA guidelines are numerous, but I will set forth a few here.
The IDSA current guidelines are based upon "research" that, when you actually read it, DOES NOT SUPPORT THE GUIDELINE RECOMMENDATIONS.
While citing a number of references may indicate that research was performed, when you actually read those references, the studies do not support the claims of the IDSA in the guidelines, and wrong conclusions were clearly made from those studies, in opposition to clear, accurate research that indicates these recommendations are false and/or misleading.
Further, Lyme patients are not being diagnosed, tested or treated by physicians who have been blindly following the CDC/IDSA guidelines from the past ever since the 1994 Dearborn CDC sponsored meeting where some of the IDSA members were present and provided faulty "research" to support ideas that would be vaccine-friendly to the pharmaceutical companies who were about to implement LYMErix.
Those guidelines were argued against very strongly at the meeting back then, yet due to the vaccine being developed at the time, the agenda appeared to be that of adopting guidelines that would be vaccine-friendly and those who opposed the use of them were blatantly ignored.
Many came away from that meeting feeling that it was "rigged" to arrive at a foregone conclusion--one that would allow the Lyme vaccine to forge ahead, despite studies still needing to be performed to prove safety and efficacy.
Again, despite opposing argument, the guidelines were adopted, including "definitions" of "ill" Lyme patients which were extremely narrow, and a push for 2-tier testing using products that were not reliable or specific, (ELISA/Western blot), but wrongly argued as reliable, were recommended.
Over time those tests have proven unreliable for various reasons, and ill Lyme patients were not, and are not, having their Lyme disease detected through these 2-tier tests.
Other labs have created more sensitive and specific tests, but the IDSA repeatedly discounts those tests as "unproven" or "inaccurate", including in the new guidelines, which is FALSE.
It then followed that hundreds of thousands of people became infected with Lyme disease that was UNDIAGNOSED, UNDETECTED AND UNTREATED, in part due to these guidelines.
These people tragically became "chronic" Lyme patients, myself and my 2 children and all of my support group members.
We all tell the same story. We were infected with Lyme, our doctors would not or could not define Lyme due to guidelines that were in existence, we did not get treatment of any kind, or only along the guidelines set at the time (which are similar to the 2006 guidelines), and we went on to disability with chronic Lyme disease.
We have lost homes, jobs, family, friends, health, finances and reputation due to Lyme disease.
Over time, the numbers have increased exponentially and there are many disabled who cannot get physicians to treat them because of guidelines like these, which attempts to define chronic Lyme disease out of existence, make recommendations that in and of themself are dangerous, and exclude most Lyme patients from diagnostic criteria for no other purpose than for what seems to be to continue to push vaccine-friendly guidelines.
There is more to this than I can type here, but these are very real issues with the current guidelines.
The vaccine Lymerix went on to abysmal failure and lawsuits against the doctors (IDSA members) and pharmaceutical companies for causing horrendous disability and Lyme disease, and some of the current IDSA are involved in those suits.
In 2006 certain IDSA individuals, who are paid advisors to pharmaceutical companies, continue to research vaccines for a future Lyme vaccine. The new guidelines (we feel) are an attempt to keep ill people sick with Lyme, by further narrowing the "criteria" for who can be called sick with Lyme disease.
For one thing, we can be studied like so many lab rats, and then eventually "offered" a curative Lyme vaccine which will generate billions in revenue for the pharma company who develops it and for those holding the patents to the technology, like IDSA members and/or their universities.
The guidelines also contraindicate the use of current treatment therapies and medications that research clearly shows are working for many patients, without the research to back up the IDSA claims contraindicating them.
Adopting legislation that is friendly to these guidelines will spell out billions of dollars in lost wages, lost tax revenues, federal disability payments, insurance company benefits and lawsuits for those who are denied benefits and will tragically sentence hundreds of thousands of people to chronic illness and disability.
There are many more issues that need to be addressed, one of which is how these guidelines were drafted, which is under investigation with the CT Attorney General's office.
Do not be so hasty as to adopt this legislation. Lyme disease is a complex illness with more than a general, "one size fits all" treatment therapy for all patients, such as these guidelines recommend.
It is so very important that you listen to your consituents who are loudly proclaiming that the IDSA GUIDELINES ARE HARMFUL to them.
The IDSA group who drafted the guidelines also did so without any outside participation from the important Lyme-aware group of ILADS physicians who have treated thousands of Lyme patients all over the country and the world, nor did they deal with whom they call "anecdotal" evidence--patients who have been forced to scramble for treatment and physicians where there are none available.
They also did not include input from the hundreds of thousands of doctors in America, many of whom are treating Lyme patients, unlike the 14 individuals who drafted the guidelines, some of whom are not even treating physicians or who only treat a narrow group of patients, with particular symptoms.
The purpose of setting guidelines is to include CURRENT RESEARCH that is accurate, not selected "research" that upon further examination, doesn't even support the claims made by the IDSA members who drafted them, guidelines which, other IDSA members do not even wholly support.
It is imperative and general practice to include top experts from different organizations with valuable input, not excluding everyone else to design guidelines that uphold self-interested parties like big pharma.
Further, these guidelines are being cited by insurance companies and social security disability, to deny benefits to patients whose only "crime" is one of having Lyme disease, and that has proven disastrous already, just since the new guidelines have been published.
It is with the utmost respect that we ask you to reconsider this legislation in its entirety, and allow outside participation by ILADS and Lyme-treating physicians and their patients, to redraft guidelines that make sense, and protect the patients and their doctors' freedom of choice and for open-ended treatment for this complex disease that cannot be treated within 21, 28 or 30 days.
If legislation must be adopted, that it be done so with the patient's best interests in mind, not those of the Washington lobbying pharmaceutical companies whose only interests are increasing their profit margins.
THE ONLY THING WE ARE FEARFUL OF are the IDSA GUIDELINES, and the pharmaceutical companies and the power that they are weilding and NOT rightfully so.
The guidelines are an inaccurate representation of the medical community's opinion, and to be adopted as such, will be disastrous for America and other countries like Canada and Britain who look to the U.S. for leadership in defining and treating infectious diseases.
posted
Splendid letter, PJ. Lymenetters, please see above on this thread for link to the latest on efforts to stop this bill.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just got some good news to share on another project...
The Harford County Lyme Disease Support Group and I have been working on this for several months and we are pleased to announce...
The Governor of Maryland, the Honorable Martin O'Malley, has officially declared:
"May is Lyme Disease Awareness Month"
His office just sent a note confirming the fact they, "won't let us down".
They also sent a beautiful Proclamation to be displayed, complete with the gold seal. VERY nice!
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
UP!!!!
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For everyone, everywhere, if you have Lyme disease or not. If this can happen here in Maryland, it can happen in YOUR area. Please forward this sincere plea to everyone in your email address book, any clubs you belong to and anyone who goes outdoors!
We need help, please!
Many of you have made calls, sent faxes and emails to the Maryland Senate EHE committee telling them you OPPOSE the Lyme disease bill (HB 836). We thank you for your support, it is very much appreciated and it was making a difference... but... after an update... sorry to say we need more help!
We have just learned the bills sponsor, Delegate Montgomery, and the Department of Health have stepped up the pressure to get the bill passed at the last minute in spite of unanimous support from Lyme patients, doctors and Support Groups nation wide. The current legislative session continues until midnight Monday, April 9, 2007, so please keep up the pressure until that time!!
I KNOW it is a holiday weekend and I know you have better things to do, but if you could find it in your heart to take a minute of your time to help those who have Lyme disease from being cut off from treatment and those who will get Lyme from being denied early treatment and having the chance of becoming chronically ill... well... it would literally save lives.
We need calls, faxes and/or emails to go to the following places ASAP telling them:
I OPPOSE the Lyme Disease Bill, HB 836.
(be sure to give your name, address, and a phone number)
THANK YOU for taking a minute of your time for Lyme and this grass roots effort. We are all volunteers and we do this because we KNOW Lyme disease and its consequences.. and we care!
We need your help because we are chronically ill and basically running out of steam after 2 solid months of fighting this bill that looks good on the surface but has serious consequences hidden in the wording. We are ALMOST there! Please lend us a hand.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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