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Author Topic: Divisions in the community
pmerv
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I would have put this in activism but can't access that part of the site.

I am writing this to provide some background for people who may not be familiar with the long history of contention within the Lyme disease community over federal Lyme legislation, pitting Connecticut's Lyme Disease Foundation (LDF) against New Jersey's Lyme Disease Association (LDA). Patients often feel confused; many are angry over the division. Few know all the details.

LDA first worked with NJ Congressman Chris Smith to introduce Lyme legislation in 1998. This first bill was introduced too close to the end of the congressional session to pass, and did not go anywhere. It was reintroduced the following year. Many Lyme groups across the country supported the bill, with the notable exception of LDF. The current legislation is very similar to Lyme legislation introduced by Congressman Smith in 2001. This was the year the LDF introduced a completely different bill two months later, dividing the community and confusing Congress. No bill passed that year.

In 2005, LDF supported Congresswoman Sue Kelly's (NY) introduction of a Lyme bill just days after LDF director Karen Forschner, in a meeting with LDA's Pat Smith and legislators, had agreed to work on compromise language with LDA. The Kelly bill was a barebones bill which established an advisory committee and nothing else. Although compromise language was eventually worked out, the legislators were very annoyed, and no Lyme bill passed that year either.

Now LDF - again in complete opposition to LDA and many national Lyme groups - is congratulating Health Subcommittee Pallone for not allowing the LDA-sponsored Lyme bill out of his committee for a hearing, claiming that it is "dangerous."

Here we go again.

LDF apparently felt comfortable supporting Kelly's bill with an advisory committee with no requirement for balanced membership, and which placed total reliance on that committee to determine goals and funding. CALDA and other LDA affiliates thought this bill was dangerous. At the time, Forschner's rationale for supporting the Kelly bill was not that the Smith bill was "dangerous," but that the Smith bill "could not pass."

The current LDA-sponsored bills have many specific directives and safeguards to prevent the doomsday predictions made in a recent Forschner email. The legislation reqires balance on the advisory committee. The IDSA strongly opposes the bills because they understand that this legislation threatens their supremacy and allows their rival, ILADS, a seat at the table.

The real danger to patients is that the bill won't pass and we will be subjected to months or years of continuing IDSA tyranny with no new federal funding for research. The bill does not "suggest" or "mandate" any treatment protocol, contrary to statements made by Pallone. The IDSA visited Washington and made sure their views would prevail. They are no doubt delighted to have Forschner's support.

History Repeats Itself

LDF often adopts positions contrary to positions held by the LDA and affiliates. For example, while LDA was in Washington trying to get the FDA to withdraw the LYMErix vaccine, LDF accepted funding from vaccine manufacturer SmithKline Beecham and supported the vaccine until it was about to be withdrawn, then jumped on the bandwagon calling for withdrawal.

Another example was when the Connecticut legislature was considering legislation mandating insurance coverage for treatment of Lyme disease. LDF supported it while some Connecticut activists begged them to "kill the bill." It passed with amendments imposed by the strong insurance lobby that, according to LLMDs, make it more difficult for chronic patients to obtain treatment. Rhode Island advocates, confronted with a similar situation with insurance company opposition, agreed to a sunset provision (the law would die automatically in one year) for their legislation rather than agreeing to a damaging treatment ceiling such as was passed in CT.

More recently, LDF supported the revision of the CDC surveillance criteria proposed by the Council of State and Territorial Epidemiologists (CSTE) which created a new category for "suspected" cases. LDA, CALDA and other LDA affiliates and the International Lyme and Associated Diseases Society (ILADS) opposed the change, fearing that the new category was a "black hole" where thousands of cases would disappear without a trace, with no accountability. CSTE also restricted the definition of an endemic area, making it more difficult for people to be diagnosed in areas of emerging infection. The LDF wrote to CDC director Julie Gerberding, praising the proposed changes.

In conclusion, Forschner's position on the federal legislation puts LDF right in line with IDSA. Both want to kill the bills. CALDA supports the federal bills and will continue to focus on moving our agenda forward to benefit patients. We encourage you to join LDA, CALDA, Time for Lyme, ILADS, and many other Lyme groups in supporting the federal legislation. Please read the text of the legislation by going to http://thomas.loc.gov/cgi-bin/thomas [or below] and if you have questions, feel free to ask. Discussion and debate are healthy. Sabotage is not.

If you are interested in reading in more detail about the conflict over the 2001 bills, go to
http://www.lymedisease.org/lyme_times/issues/lyme_times_archives.html and click on Download Issue under Fall Issue, 2001.

Phyllis Mervine
CALDA


BILL TEXT

Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007 (Introduced in House)

HR 741 IH
110th CONGRESS
1st Session

H. R. 741

To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

IN THE HOUSE OF REPRESENTATIVES
January 31, 2007

Mr. SMITH of New Jersey (for himself, Mr. STUPAK, Mr. HOLDEN, Mr. GILCHREST, Mr. SHAYS, Mrs. LOWEY, Ms. DELAURO, Ms. BEAN, Mr. LANGEVIN, Mr. BAIRD, Mr. KIRK, Mr. ACKERMAN, Mr. GRIJALVA, and Mr. MCHUGH) introduced the following bill; which was referred to the Committee on Energy and Commerce

A BILL

To provide for the expansion of Federal efforts concerning the prevention, education, treatment, and research activities related to Lyme and other tick-borne diseases, including the establishment of a Tick-Borne Diseases Advisory Committee.

Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the `Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007'.

SEC. 2. FINDINGS.

Congress makes the following findings:

(1) Lyme disease is a common but frequently misunderstood illness that, if not caught early and treated properly, can cause serious health problems.

(2) Lyme disease is a bacterial infection that is transmitted by a tick bite. Early signs of infection may include a rash and flu-like symptoms such as fever, muscle aches, headaches, and fatigue.

(3) Although Lyme disease can be treated with antibiotics if caught early, the disease often goes undetected because it mimics other illnesses or may be misdiagnosed. Untreated, Lyme disease can lead to severe heart, neurological, eye, and joint problems because the bacteria can affect many different organs and organ systems.

(4) If an individual with Lyme disease does not receive treatment, such individual can develop severe heart, neurological, eye, and joint problems.

(5) Although Lyme disease accounts for 90 percent of all vector-borne infections in the United States, the ticks that spread Lyme disease also spread other diseases, such as ehrlichiosis, babesiosis, and other strains of Borrelia. All of these diseases in 1 patient makes diagnosis and treatment more difficult.

(6) Studies indicate that the actual number of tick-borne disease cases are approximately 10 times the amount reported.

(7) Persistence of symptomatology in many patients without reliable testing makes treatment of patients more difficult.

SEC. 3. ESTABLISHMENT OF A TICK-BORNE DISEASES ADVISORY COMMITTEE.

(a) Establishment- Not later than 180 days after the date of the enactment of this Act, the Secretary of Health and Human Services (referred to in this Act as the `Secretary') shall establish within the Office of the Secretary an advisory committee to be known as the Tick-Borne Diseases Advisory Committee (referred to in this section as the `Committee').

(b) Duties- The Committee shall advise the Secretary and the Assistant Secretary for Health regarding the manner in which such officials can--

(1) ensure interagency coordination and communication and minimize overlap regarding efforts to address tick-borne diseases;

(2) identify opportunities to coordinate efforts with other Federal agencies and private organizations addressing such diseases;

(3) ensure interagency coordination and communication with constituency groups;

(4) ensure that a broad spectrum of scientific viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced; and

(5) advise relevant Federal agencies on priorities related to the Lyme and tick-borne diseases.

(c) Membership-

(1) APPOINTED MEMBERS-

(A) IN GENERAL- From among individuals who are not officers or employees of the Federal Government, the Secretary shall appoint to the Committee, as voting members, an equal number of individuals from each of the groups described in clauses (i) through (v) of subparagraph (B).

(B) GROUPS- The groups described in this subparagraph include the following:

(i) Scientific community members representing the broad spectrum of viewpoints held within the scientific community related to Lyme and other tick-borne diseases.

(ii) Representatives of tick-borne disease voluntary organizations.

(iii) Health care providers, including at least 1 full-time practicing physician, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases.

(iv) Patient representatives who are individuals who have been diagnosed with a tick-borne disease or who have had an immediate family member diagnosed with such a disease.

(v) Representatives of State and local health departments and national organizations that represent State and local health professionals.

(C) DIVERSITY- In appointing members under this paragraph, the Secretary shall ensure that such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee.

(2) EX OFFICIO MEMBERS- The Secretary shall designate, as nonvoting, ex officio members of the Committee, representatives overseeing tick-borne disease activities from each of the following Federal agencies:

(A) The Centers for Disease Control and Prevention.

(B) The National Institutes of Health.

(C) The Agency for Healthcare Research and Quality.

(D) The Food and Drug Administration.

(E) The Office of the Assistant Secretary for Health.

(F) Such additional Federal agencies as the Secretary determines to be appropriate.

(3) CO-CHAIRPERSONS- The Secretary shall designate the Assistant Secretary of Health as the co-chairperson of the Committee. The appointed members of the Committee shall also elect a public co-chairperson. The public co-chairperson shall serve a 2-year term.

(4) TERM OF APPOINTMENT- The term of service for each member of the Committee appointed under paragraph (1) shall be 4 years.

(5) VACANCY- A vacancy in the membership of the Committee shall be filled in the same manner as the original appointment. Any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of that term. Members may serve after the expiration of their terms until their successors have taken office.

(d) Meetings- The Committee shall hold public meetings, except as otherwise determined by the Secretary, after providing notice to the public of such meetings, and shall meet at least twice a year with additional meetings subject to the call of the co-chairpersons. Agenda items with respect to such meetings may be added at the request of the members of the Committee, including the co-chairpersons. Meetings shall be conducted, and records of the proceedings shall be maintained, as required by applicable law and by regulations of the Secretary.

(e) Authorization of Appropriations- For the purpose of carrying out this section, there is authorized to be appropriated $250,000 for each of the fiscal years 2008 through 2011. Amounts appropriated under the preceding sentence shall be used for the expenses and per diem costs incurred by the Committee under this section in accordance with the Federal Advisory Committee Act, except that no voting member of the Committee shall be a permanent salaried employee.

SEC. 4. FEDERAL ACTIVITIES RELATED TO THE DIAGNOSIS, SURVEILLANCE, PREVENTION, AND RESEARCH OF LYME AND OTHER TICK-BORNE DISEASES.

(a) In General- The Secretary, acting as appropriate through the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Commissioner of Food and Drugs, and the Director of the Agency for Healthcare Research and Quality, as well as additional Federal agencies as the Secretary determines to be appropriate, and in consultation with the Tick-Borne Diseases Advisory Committee, shall provide for the coordination of all Federal programs and activities related to Lyme and other tick-borne diseases, including the activities described in paragraphs (1) through (4) of subsection (b).

(b) Activities- The activities described in this subsection are the following:

(1) DEVELOPMENT OF DIAGNOSTIC TESTS- Such activities include--

(A) the development of sensitive and more accurate diagnostic tools and tests, including a direct detection test for Lyme disease capable of distinguishing active infection from past infection;

(B) improving the efficient utilization of diagnostic testing currently available to account for the multiple clinical manifestations of both acute and chronic Lyme disease; and

(C) providing for the timely evaluation of promising emerging diagnostic methods.

(2) SURVEILLANCE AND REPORTING- Such activities include surveillance and reporting of Lyme and other tick-borne diseases--

(A) to accurately determine the prevalence of Lyme and other tick-borne disease;

(B) to evaluate the feasibility of developing a reporting system for the collection of data on physician-diagnosed cases of Lyme disease that do not meet the surveillance criteria of the Centers for Disease Control and Prevention in order to more accurately gauge disease incidence; and

(C) to evaluate the feasibility of creating a national uniform reporting system including required reporting by laboratories in each State.

(3) PREVENTION- Such activities include--

(A) the provision and promotion of access to a comprehensive, up-to-date clearinghouse of peer-reviewed information on Lyme and other tick-borne disease;

(B) increased public education related to Lyme and other tick-borne diseases through the expansion of the Community Based Education Programs of the Centers for Disease Control and Prevention to include expansion of information access points to the public;

(C) the creation of a physician education program that includes the full spectrum of scientific research related to Lyme and other tick-borne diseases; and

(D) the sponsoring of scientific conferences on Lyme and other tick-borne diseases, including reporting and consideration of the full spectrum of clinically-based knowledge, with the first of such conferences to be held not later than 24 months after the date of enactment of this Act.

(4) CLINICAL OUTCOMES RESEARCH- Such activities include--

(A) the establishment of epidemiological research objectives to determine the long term course of illness for Lyme disease; and

(B) determination of the effectiveness of different treatment modalities by establishing treatment outcome objectives.

(c) Authorization of Appropriations- For the purposes of carrying out this section, and for the purposes of providing for additional research, prevention, and educational activities for Lyme and other tick-borne diseases, there is authorized to be appropriated $20,000,000 for each of the fiscal years 2008 through 2012. Such authorization is in addition to any other authorization of appropriations available for such purpose.

SEC. 5. REPORTS ON LYME AND OTHER TICK-BORNE DISEASES.

(a) In General- Not later than 18 months after the date of enactment of this Act, and annually thereafter, the Secretary shall submit to Congress a report on the activities carried out under this Act.

(b) Content- Reports under subsection (a) shall contain--

(1) significant activities or developments related to the surveillance, diagnosis, treatment, education, or prevention of Lyme or other tick-borne diseases, including suggestions for further research and education;

(2) a scientifically qualified assessment of Lyme and other tick-borne diseases, including both acute and chronic instances, related to the broad spectrum of empirical evidence of treating physicians, as well as published peer reviewed data, that shall include recommendations for addressing research gaps in diagnosis and treatment of Lyme and other tick-borne diseases and an evaluation of treatment guidelines and their utilization;

(3) progress in the development of accurate diagnostic tools that are more useful in the clinical setting for both acute and chronic disease; and

(4) the promotion of public awareness and physician education initiatives to improve the knowledge of health care providers and the public regarding clinical and surveillance practices for Lyme disease and other tick-borne diseases.

[ 02. October 2008, 03:32 AM: Message edited by: pmerv ]

--------------------
Phyllis Mervine
LymeDisease.org

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shazdancer
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Thanks, Phyllis. Having read through the bill, particularly the wording about the makeup of the committee, I feel there are enough checks and balances to ensure that many points of view are represented.

quote:
(C) DIVERSITY- In appointing members {of the Lyme committee} under this paragraph, the Secretary shall ensure that such members, as a group, represent a diversity of scientific perspectives relevant to the duties of the Committee.
So although it is possible that IDSA-affiliated groups might try to dominate the committee, there is a congressional gatekeeper who is answerable to all of us.

I also liked this, under the duties of the committee:

quote:
(4) ensure that a broad spectrum of scientific viewpoints are represented in public health policy decisions and that information disseminated to the public and physicians is balanced
I would encourage everyone to read the bill, not someone's opinion about the bill (including mine!).

Peace,

Sharon

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lou
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I am sick and tired of the divisions and think it hurts our cause for sure. Since lives depend on breaking the logjam, it behooves all the lyme leaders to find a way to cooperate.

Patients do not want to have to figure out who is right and do all the research themselves. And they find it disheartening and discouraging to see these divisions.

Why doesn't someone hire a professional facilitator and get these parties in the same room to hash out their differences and improve the relationship? There is no room for giant egos and competition which impede progress.

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liesandmorelies
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Thank you for posting this. I have read it and am going to read it again.

I think everyone should read this.

Elizabeth

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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bettyg
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phyllis,

thank you for posting the entire bill; [group hug] good reminder since it had been a year or more since i last read it all!


thanks also for the background of lda vs. ldf. i didn't know of any of this.

betty

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Tincup
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Like Phyllis and many others, I am tired of this garbage.

Thank you Phyllis for taking time to set the record straight.

My response is too long to add here.

Since I was addressed personally in the original post, I've replied.

I put my response on another site in Activism since that board is now up and running again.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=8&t=001399

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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pmerv
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Lou, you're not the only one who is sick and tired. How do you feel after months and months of hundreds of people doing all sorts of things to try to get the bills passed, including sick people dragging themselves out to protest on the sidewalk outside of Pallone's office, only to have LDF's Karen Forschner congratulate the man for killing the bill!

If nothing else, the sheer gall and lack of respect for other peoples' good-hearted effort is shattering.

I have a whole list of similar stories I hesitate to post, but if you think the leaders can work together, you are delusional. I have been doing this work for almost 20 years now and the story has remained the same! You have to be able to trust people to work with them.

It's time to call a spade a spade and call a halt to these intolerable and destructive activities.

--------------------
Phyllis Mervine
LymeDisease.org

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pmerv
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I am going to jump over to Activism where more discussion of this topic is ongoing.

--------------------
Phyllis Mervine
LymeDisease.org

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hurtingramma
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But what can WE do to get LDF to lay off? I want to help, but am not as articulate as Tincup.

--------------------
"Few of us can do great things, but all of us can do small things with great love". Mother Theresa

http://www.facebook.com/profile.php?id=1629665573&ref=name

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Tincup
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Hey hurting...

Thank you.

Your understanding of the situation is more than I could ask for. Really, it is.

A kind word these days goes far.

This problem has been dragging all our efforts down. Much more goes on than we can imagine that is totally negative... and which is a shame.. and is so senseless.

I can't believe some folks make it their goal to get up each day and see who they can burn... and they don't even KNOW them!

I don't know what we can all do to stop the attacks and bad information out there. Sure wish I did.

I can say what I am going to do.

Since working around the boulders shoved in our road isn't working....

And trying to ignore their trash doesn't work either because it is a run-a-muck situation that is totally out of control now...

I am going to confront it head on.

As things pop up as they have been doing for months now, actually years...

I will just get it out in the open.

If there is a legitimate problem we need to DISCUSS it and NOT play games with people's lives. If someone hates me for whatever reason or doesn't get every detail they feel they should have about what folks are doing here and there... fine. They can certainly be unhappy about it.

But that is NO reason to hurt innocent people by trashing the work we are doing to help THEM and many others.

I've thought sincerely about all this garbage... and...

I am not sure why some people and groups feel they aren't being heard... although I also know using the approach they are using is one good reason for folks NOT wanting to listen...

But maybe we should just bring the topic out of the closet and deal with it directly as it occurs.

I had to resort to posting responses and finally address what was going on with the LymeNet Europe situation... after months of trying to ignore the problems they were causing.

I hoped they would grow up, come to their senses, or get a life... but it didn't work. Even LouB booting them off the board didn't help.

They blamed LouB for following through with what needs to be done when folks don't be nice and act up in a hurtful fashion.... and slammed him rather than consider it MIGHT be them that is the problem.

I know some folks were upset when I finally posted replies to their trashing... but they weren't the ones on the hot seat who were being libeled, harassed and trashed for doing nothing more than trying to help others.

When our best people are being bashed (Jones, Burrascano, LLMD's, patient advocates, groups and organizations, etc)...

And any alternative treatments suggested by caring individuals were being slammed by those never bothering to try them...

And our educational efforts were being trashed (books)... and NOTHING was sacred, etc...

What do we do?

As hard as we all work and as much as we need help... it isn't fair to have those doing the work being blasted and smeared with lies and hateful accusations all day and all night.

About 1/3 of my DAILY volunteer hours lately have been spent trying to comfort people getting hurt by these people... trying to explain why they are doing it... which I don't know...

And trying to undo the damage they have done.

Enough is enough.

I have two choices. Either give it all up and let others spend their lives doing all this work for free... or TRY to make our volunteer jobs be more pleasant for all to do.

So rather than letting it brew.. and NEVER being the one to START the problems....

I am going to come back with honest, reasonable responses to the rumors and gossip and negative actions.

Will I sound angry in some of the posts? Yes... probably. Because I am human too.. and no one can take what is being dished out without coming back feeling ugly all the time.

When patients contact me in tears... and doctors are being dissected and eaten alive for all their efforts... I can't help but be VERY angry watching that going on.

And coming from those pretending to be helpful and wanting to "save" the world from bad people... my goodness.

It has to stop.

If patients and groups will also stand up to this stuff, it might help.

I've told folks for a LONG time to just ignore it, for lack of a better solution. In NORMAL circumstances that would be the right thing to do and it would have worked. But after years of trying.. that didn't work.

So if anyone wants to post their feelings... please do. I am pleased at any showing of support for all of the people working hard to make positive changes.

May I suggest... no matter how bad it gets...

Please try to respond by addressing the topic... not the person.

I KNOW that is hard to do when those who have no substance don't give us much in the way of facts and reasons... and it is all slyming attacks just for the fun of it...

But we can try.

We must do something.

How many more years of donating their time can we expect from folks doing this work? How many more years.. heck, days... can those being blasted take it before they throw in the towel, walk away from this mess and just go fishing?

Thanks hurting... your kind words Do help.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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phyllis and tincup,


well said for all the info you 2 have brought her for us all to read for 1st time or as a reminder.


i agree with tincup; address the attacks as they occur.

i've sure missed the board being down so much; i missed the latest on this...

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Tincup
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Up, because...

TEN YEARS LATER we are STILL having problems with Karen Forscher and others who are listening to her.

They are definately hurting you and our efforts to help you.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Ann-Ohio
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Trying to sort this out. Phyllis's original post here on this topic was in 2008.

Karen Forscher was on the Tick-borne Diseases Working Group, but resigned:

https://www.lymedisease.org/tbd-working-group-changes/?fbclid=IwAR16MmJegYMoCK3FNiL2aJ_KtPNcmArQQ52PPgIxT00fTBB1EnCGDAtE7Zg

I didn't find the LDF on the internet. Where is Karen speaking out against these bills, now?

Thanks,

--------------------
Ann-OH

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Ann-Ohio
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Found the LDF on Facebook. Looks like it became active again just this year.

--------------------
Ann-OH

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Tincup
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Ann-OH

She is speaking out mostly behind the scenes (as usual), with some posts on facebook, maybe twitter (social media I am not on) or whatever.

She has joined with and/or has worked with at least one person related to the Lyme Army Facebook page and Mayday Project that also just has a Facebook page, some with Kathleen Dickson (?) and a few more hum dingers here and there.

As for LDF being active again- I saw one post asking for funding and I believe office equipment (?) to get started up again. But, I've seen nothing that is being done as a result, other than the same old, same old trashing and putting out wrong info, etc.

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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And yes, Ann-OH, she quit the TBDWG (or maybe was told to go?).

I've heard many excuses as to why she quit- none that held any water with me or made sense and all excuses blamed others for her quitting.

My opinion is, since she and Susan Green from NatCap Lyme both quit after being appointed- using up valuable space when we could have had others chosen, and both are attorneys...

It is because they found out they couldn't earn money off of Lyme patients & doctors while they were on the committee and for a short while afterwards.

(Federal Rules & Regs won't allow any participants to profit off Lyme related "things"- conflict of interest.)

I am disgusted that they had a chance to represent us and help us, then just quit and walked away. I also heard complaints from that direction that there was "too much work" to do. Well, boo hoo.

BUT, I didn't see others quit because of the amount of work there was, and there was a lot.

Lyme Disease Association and their affiliates had several volunteer TBDWG members (full committee and subcommittees), as did LymeDisease.org and they didn't quit.

I am very proud of the work they did, especially in holding off the wolves.

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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TX Lyme Mom
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Does anyone know if there is any truth to the very old "rumor" that the Forschners were sponsored (paid) by the insurance industry?

My recollection is that the Forschners were the very first persons to call attention to the devastation caused by Lyme disease when they lost a child who had been infected in the womb with Lyme disease -- back in the mid-1990s, long before Lyme disease had become widely recognized -- and that they sponsored annual Lyme disease conferences for a number of years, until ILADS was finally formed ca 2002. Does anyone know if my vague memory about the early history of the LDF is accurate?

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Ann-Ohio
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You have the basics right. I don't think the rumor about their backing from the insurance industry was ever proven. They did a lot of work on the costs of Lyme disease to patients and families.

On the facebook page, one post talks about a presentation to be made on costs at the ILADS conference in Spain in the fall.

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Ann-OH

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Tincup
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Here are some articles that may assist with the history.

BTW- LDF wasn't the first group on the scene. There were a number of them across the country, but from what I remember they were all volunteers.

LDF did do some conferences, as did LDA and ILADS who are still doing them.

Here are some quotes from the first article (1997) linked below...

"Although the foundation gets some money from intravenous drug companies, he said, it also gets support from companies that make tick repellents, Lyme disease tests and vaccines."

"For all its detractors, the Lyme Disease Foundation continues to have support from the national Centers for Disease Control. The foundation has a $75,000 CDC grant to produce a handbook for physicians on how to diagnose and treat Lyme disease."

"In its heyday, the foundation had a staff including a medical director to edit its journal and provide other clinical advice. Although its budget hovers around $470,000, the organization has started to shrink back to the mom-and-pop shop that started it."

"They keep a suite of offices on the 18th floor of the Gold Building in Hartford. Tom is paid $80,000 as executive director."

"Their quest led to another birth: the Lyme Disease Foundation, born in 1988 in the Forschner's Tolland basement."

1997 article...

https://sites.google.com/site/lymelegislation/dr-jaller/karen-forschner-conflicts-shadow-lyme-crusade

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2000 article... Lyme Disease Foundation Accepts Large Grant From Makers of the Lyme Vaccine

https://sites.google.com/site/lymelegislation/natcap-actions/ldf-accepts-grant-from-vaccine-makers

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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