Urgent for Our LLMDs

ALSO!!!! Burrascano Legal defense Fund
c/o Monica Miller
PO Box 410
Kinderhook, NY 12106

Saving our Medical Care
From Ellen

I think we are all aware by now that the OPMC hearing of Dr. Burrascano
will end in early September.  Because we are convinced that the OPMC is
biased, New Yorkers have worked really hard to get  intervention by the
legislature before the OPMC is permitted to take away Dr. B's right to
treat us.   We are now down to the wire , since legislative hearings
would have to be held prior to the time that the decision on Dr. B is
handed down by the OPMC, probably in December.

I do not know if everyone is aware of the implications of this case to
every Lyme disease patient in the country.  Dr. Burrascano is the best
known Lyme disease physician in the world.  If he loses his license, it
is highly unlikely that other physicians would feel safe in continuing
to treat us.

We must find more New Yorkers to work with us.   We are lobbying the NYS
Senate, and need more people in order to do this.   The number of people
doing this has not in any way reflected the number of Lyme disease
patients in New York State.

WHAT YOU CAN DO RIGHT NOW:
For those of you who see physicians in the Northeast who are likely to
have patients in New York State, please contact them and ask them to
print out the flyer and send them to all their New York State patients.
We are in a true crisis, and I hope everyone will begin to work on this
immediately. 

http://www.aero-vision.com/~cheryl/flyer.html

THE ISSUE
Lyme disease patients are currently protesting the actions of the New
York State Office of Professional Medical Conduct (OPMC), the medical
licensing arm of the Department of Health, against doctors in NYS who
are willing to offer ongoing treatment to chronic Lyme disease patients
(Lyme Literate Medical Doctors or LLMD's).   OPMC harassment of LLMD's
over a period of years has left NYS, the state with the largest number
of Lyme disease cases in the country, with only eleven doctors who are
willing to treat chronic Lyme disease. Out of these eleven LLMDs , the
OPMC is currently involved in various stages of investigation of at least FIVE for alleged medical misconduct.

In addition, the OPMC investigations of NYS LLMD's coincided with charges against LLMD's by the medical licensing boards in several other states. These investigations could lead to loss of medical licenses or restrictions on the doctors' right to treat Lyme disease. The chilling effect on the medical community caused by the obvious targeting of Lyme disease physicians has made it increasingly difficult or impossible for Lyme patients to find adequate medical care.

In the instance of the NYS cases, Lyme disease patients feel that these
hearings are inherently unjust, since the OPMC has repeatedly stated in
letters to us that the guidelines it uses to judge Lyme disease physicians "rarely if ever" indicate that more than 2-3 weeks of antibiotic treatment is needed to cure Lyme disease. This is clear evidence of bias, since the OPMC is ignoring the considerable scientific evidence that Lyme disease can persist beyond such limited treatment.

CURRENT STATUS OF KNOWN OPMC ACTIONS AGAINST LLMDs:   As of 8/29/01, Dr. Joseph Burrascano, the best known of our LLMD's and the author of guidelines that have been followed by many physicians who treat chronic Lyme disease, has been charged with medical misconduct and has been in hearings before the OPMC since October of last year. His hearing will continue into September.

Dr. Perry Orens, whose license was revoked in 11/99 as a result of his
hearings before the OPMC, has had his license reinstated by the Appellate court of the Supreme Court of New York State. The Appellate court overturned the OPMC's decision based on the fact that the judging panel at the OPMC hearing was supposed to have consisted of two physicians and a lay person but that the supposed lay person was actually a Physician's Assistant. The OPMC now has the right to appeal this decision and/ or retry him. They have gone ahead and filed a motion to appeal the decision.

Three other LLMDs who do not now wish to become public are under
investigation by the OPMC.

THE BASIC SCIENTIFIC CONTROVERSY:
There has been a long-standing controversy in the medical community as
to whether or not Lyme disease is easily diagnosed, treated and cured.
One group states that diagnosis is easy and that Lyme is almost always
cured with 4 weeks of antibiotics. If the patient is still sick after those 4 weeks, this group claims that either the patient was incorrectly diagnosed, that the continuing symptoms are psychosomatic, or that the patient now suffers from an autoimmune problem which was caused by the original Lyme infection --- and that there is no treatment for this auto-immune problem.

The other side of the controversy is supported by chronic Lyme patients
and the physicians who treat us. We contend that the persistence of Lyme
disease symptoms beyond the 4 week treatment is due to the persistence
of the Lyme disease bacterial infection and/or to the presence of co-infection. We attest to the fact that we do much better when treated
beyond those 4 weeks of antibiotic treatment. Our subjective experience
is supported by a body of peer reviewed scientific research.

Since there is no definitive test to show when someone has Lyme disease
and/or is cured of it, since our symptoms persist past the standard four
week treatment, and since we have significant scientific literature
supporting that the Lyme bacterium can survive this standard treatment,
we protest any attempt by the OPMC to repress the right of physicians to
treat chronic Lyme disease patients according to their best clinical judgment which has been informed by the scientific literature.

HOW THE OPMC WORKS:
OPMC investigations are begun when a complaint is made against a doctor. The identity of the complainant is kept confidential. Anyone is
permitted to make a complaint, but complaints are generally made by
either a patient, a physician OR an insurance company. In addition, OPMC
may instigate a complaint on its own. If OPMC investigates the original
claim and determines it has some validity, it then has the right to go into all of the physician's records, not just the record pertaining to the complainant.

Investigations can and do go on for a number of years, involving a fine
tooth combing of the physician's records. The ultimate charges that bring a physician before an OPMC hearing committee are lodged by OPMC.
The charges may have nothing to do with the original complaint that was
made, but rather may arise from the OPMC's lengthy investigation of all
the doctor's medical records.

HISTORY OF ACTIVISM AGAINST OPMC HARASSMENT OF LLMD's: The political work recounted below has been the combined effort of Lyme disease patients, Pat Smith of the Lyme Disease Association (LDA), Monica Miller of the Foundation for the Advancement of Innovative Medicine (FAIM), and NYS Assembly members Nettie Mayersohn and Joel Miller.   The strength and courage that was shown by hundreds or thousands of extremely ill Lyme disease patients in fighting against OPMC oppression seems nothing short of miraculous and something we can all be very proud of.

1)INITIAL PROTEST:
In December 1999, alarmed that New York LLMD's were being investigated
by the OPMC and outraged by the revocation of Dr. Orens' license, a
group of Lyme disease patients organized the opening move in our activism. More than 100 people staged a protest was in front of OPMC
headquarters in NYC.

2) DR. MARKS LETTER REVEALS OPMC BIAS:
On 12-21-99, Dr. Ansel Marks, executive secretary of the OPMC wrote in a
letter to one of the Lyme patients that "the Centers for Disease Control, American Lyme Disease Foundation, Medical Letter, and a host of other sources have provided guidance for the standard care of Lyme disease. Rarely, if ever, have these published guidelines indicated that anything more than two-three weeks of antibiotics are required to cure Lyme disease."

This unexpected admission of bias by the OPMC, which was to be judge and jury in the investigations and hearings of our LLMDs, was shocking to
the Lyme community. This message was repeated in several letters by the
OPMC over a period of time.

3) LETTER WRITING CAMPAIGN/ LOBBYING OF NYS OFFICIALS: The Lyme community (including LymePac a coalition of New York State support group leaders, other NYS activists, and Monica Miller with FAIM) organized
national letter writing campaigns to key New York State politicians
protesting the obvious bias of the OPMC. Monica Miller followed up with
lobbying visits to these politicians, some of whom contacted the OPMC on
our behalf.
The thousands of letters received by Assemblyman Joel Miller had the
impact we wanted.   Jill Auerbach, a Lyme activist from upstate New York, had been in constant contact with Assemblyman Miller about the critical issues facing Lyme disease patients. The letters gave Miller a sense of the extent of the epidemic and helped motivate him to take an additional step in becoming an impassioned advocate for our cause.
Nettie Mayersohn, an Assemblywoman in Queens, New York , was also moved by the letters she received from the Lyme community.   After carefully
investigating the situation, she became convinced that the OPMC's
actions against the LLMD's constituted a serious injustice. She and
Miller ultimately teamed up to work on our behalf behind the scenes with
the NYS government.

4) WHAT WE HAVE BEEN ASKING THE LEGISLATURE TO DO: Because the NYS constitution does not permit the legislature to intervene directly in
OPMC investigations or hearings against doctors, our request has been
that the legislature hold public hearings into the bias of the OPMC
against Lyme disease physicians.

We have been asking for a moratorium on OPMC actions against LLMD's
until after these public legislative hearings could insure that the OPMC
would be unbiased in their dealings with them. (Technically, only the Governor can call for such a moratorium, so that this latter point is actually a request that the legislators petition the Governor for a moratorium).
The OPMC responded to legislators who approached them on our behalf by
claiming that they were not biased against LLMDs.

5) THE OPMC PRESENTS DR. BURRASCANO WITH OFFICIAL CHARGES OF MEDICAL MISCONDUCT- Summer of 2000: The OPMC used the opportunity of the legislature's recess to move to the next step in the process against Dr. B, They presented him with official charges of medical misconduct and scheduled his hearing for October 26th, 2000.

The Lyme community quickly responded to the hearing date against Dr. B
by planning a rally in NYC at the Plaza Hotel (see below), and renewing
the letter writing campaigns, visits to legislators and contact with the media.

On September 15th, Assemblyuman Miller arranged a meeting with representatives of Antonia Novello, the New York State Commissioner of
Health, together with some patients and physicians, to discuss issues of
Lyme and other Tick-borne disease problems facing the NYS health care
system.

The rally, held on November 9th in New York City, drew many hundreds of
Lyme disease patients from across the country.
Two LLMD's spoke out against OPMC repression of LLMD's and letters,
official statements and a petition all signed by physicians were read to
the crowd.   Both Pat Smith of the LDA and Tom Forschner of the LDF
also spoke out. The rally and much of the activism in New York State has
been organized by an ad hoc grassroots group adopting the name Voices of Lyme, which had been used in previous Lyme disease activism across the country. This group was greatly assisted by Pat Smith of the LDA and
Monica Miller of FAIM.

Inside the Plaza Hotel immediately before the rally FAIM held a press
conference wherein 5 of those patients whose patient charts had been
used to charge Dr.Burrascano made themselves publicly known and spoke in his defense.

6) INCREASE IN LOBBYING EFFORTS: Assemblymembers Miller and Mayersohn held another meeting with the representatives of Dr. Novello and Lyme activists on March 26th.

In an effort to muster more support in the legislature, FAIM and Voices
of Lyme, with support from Pat Smith, organized Lobby Day for March
27th. More than 200 New York State residents and patients of New York
State LLMD's went to Albany to lobby legislators to hold public hearings
into OPMC harassment of our physicians.
We were accompanied by Lyme disease representatives from across the
country in a silent vigil reminding the NYS legislators that the whole country is watching what happens in NYS!

In the months following Lobby Day, New Yorkers have lobbied NINETY State
legislators, most of whom have been sympathetic and have stated their
willingness to join with Assemblymembers Mayersohn and Miller in getting
legislative hearings.

7) BEHIND THE SCENES NEGOTIATIONS:
On April 25th, Mayersohn and Miller and other legislators supporting us,
and Lyme activists headed by Pat Smith, met with representatives of the
Governor's office to halt the actions of the OPMC. Since then, there have been other meetings and considerable behind the scenes negotiations
in attempts to insure justice for our doctors.

8) GRASSROOTS CALL ON GOVERNOR TO INTERVENE IN OPMC ACTIONS: On June 13th and 14th, 2001 , patients across the country conducted a two day call-in and write in campaign to Governor Pataki, asking him to intercede and halt the actions of the OPMC against Lyme disease physicians. Governor Pataki has not responded publicly and further
attempts to reach him will be organized in the future.

CURRENT PLANS FOR ACTIVISM:
We are now resuming our lobbying of all New York State legislators which
had been temporarily halted as the legislature was finishing up the current spring session and going on summer vacation.   We continue to press for legislative hearings into OPMC bias.

HOW YOU CAN HELP END OPMC HARASSMENT OF LLMD'S; We are asking all New York State residents to help us in this fight by signing up with Voices of Lyme by e-mailing Cheryl at nylyme@yahoo.com to assist in letter
writing and lobbying. Those without e-mail can call Eva at 631-878-6657.
We will then contact you with more information. This list is not only for Lyme disease patients, but rather for anyone who is willing to work with us.

We are also asking for Lyme patients, particularly those in the Northeast, to print out and distribute the flyer we have written to inform New York State Lyme patients of the OPMC issue and ask them to sign up with us.   This is extremely important!!!
http:/www.aero-vision.com/~cheryl/flyer.html

To see how the Lyme Controversy fits in the larger context of NYS medical politics go to http://www.faim.org/news.htm We would also like to ask Lyme disease activists in each state to organize those people who will be willing to take a stand on the OPMC harassment issue!!

Although much of the work at present has to be limited to New York State
Lyme disease patients, we do not know what the future will hold. Being
able to mobilize hundreds or thousands of people at a moment's notice
for protests, letter writing campaigns, etc., could mean a great deal in
stopping persecution of our doctors and insuring medical care for every
Lyme disease patient. Thank you, Voices of Lyme