Dr. Orens-Update from Ellen

[Guest guest]

Last week, the OPMC moved ahead in its action against Dr. Orens. As you

may remember, the decision to revolke his license had been overturned by

the Supreme Court of NY Appellate division. Last week the Department

of Health filed a motion to appeal that action by the Supreme Court and

to try to again take Dr. Orens' license. I have updated teh Summary

below to reflect this. If you send the Summary on , please use this

latest version.

Thanks,

Ellen

PLEASE DISTRIBUTE;

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.

ph Burrascano, the best known of our LLLMD'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. 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 of the Lyme Disease Association (LDA),

of the Foundation for the Advancement of Innovative Medicine (FAIM), and

NYS Assembly members Nettie Mayersohn and .   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 with FAIM) organized

national letter writing campaigns to key New York State politicians

protesting the obvious bias of the OPMC. followed up with

lobbying visits to these politicians, some of whom contacted the OPMC on

our behalf.

The thousands of letters received by Assemblyman had the

impact we wanted.   Jill Auerbach, a Lyme activist from upstate New

York, had been in constant contact with Assemblyman about the

critical issues facing Lyme disease patients. The letters gave 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

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 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 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 of the LDA and

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 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 , 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 in getting

legislative hearings.

7) BEHIND THE SCENES NEGOTIATIONS:

On April 25th, Mayersohn and and other legislators supporting us,

and Lyme activists headed by Pat , 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@... 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