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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Perry Orens, whose license was revoked in 11/99 as a result of his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
judgement 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, Assemblyman 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.lymeinfo.net/advocacy.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
This ribbon symbolizes:
- Progress in Medicine
Without Fear of Reprisal
- Support for scientists
developing new medical treatments
- Support for physicians
working with these scientists' discoveries
- Support for physicians
who have thus become casualties of the
medical wars or Prisoners of Conscience in America
- http://www.treatmentchoice.com/yellowribbon.html#ribbon
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