Report OPMC Bias
As many of you know, the New York State group of Lyme
disease advocates has just met to outline a plan of action
to protect our right to treatment. We have been getting good
response to our e-mail campaigns, but the following is our
urgent recommendation for action at this point.
We are urging that the state legislature investigate the
bias of the Office of Professional Medical Conduct (OPMC)
which has revealed their bias in favor of short term
antibiotic treatment in Dr. Marks' letter of 12/21/99.
Monica Miller is lobbying for us in Albany.
ESSENTIAL THINGS FOR YOU TO DO NOW:
We are asking all of you, NO MATTER WHAT STATE YOU LIVE IN
to write as many letters as possible to the designated
officials (below) and letters to the editors of newspapers.
Only a flood of letters will enable us to be heard.
We are also asking NYS residents to visit their state
legislatures to get our story out. (more information below).
CONTENTS OF LETTERS:
In both the letters to the officials and the letters to the
editors, please focus on the fact that the OPMC of NYS
Department of Health would limit our treatment to 3 weeks of
antibiotics, despite considerable medical evidence that this
can be inadequate. Add that we urge the legislature to hold
public hearings to determine the impartiality of the OPMC on
Lyme disease. Also, include your individual story e.g., how
long to get diagnosed , what happens when treatment is
stopped, what shape you are in, etc. For instance, I myself
was treated with the three week "cure" 10 years ago and
spent the last several years mostly bedridden as a result.
It is ok to use the names of the physicians under attack
when communicating with officials. (In dealing with the
PRESS, however, only Dr. Burrascano has given permission to
use his name).
OFFICIALS TO WRITE TO:
Hon. Joseph Bruno
Senate Majority Leader
Room 909 LOB
Albany, NY 12247
BRUNO@SENATE.STATE.NY.US
Hon. Michael A.L. Balboni
New York Senate
( Part of Nassau District)
Room 803 LOB
Albany, NY 12247
BALBONI@SENATE.STATE.NY.US
Hon. James J. Lack
New York Senate
(Part of Suffolk District)
Room 413 State Capitol
Albany, NY 12247
LACK@SENATE.STATE.NY.US
Hon. Roy M. Goodman
New York State Senate
(Part of New York District)
Room 913 LOB
Albany, NY 12247
GOODMAN@SENATE.STATE.NY.US
Hon. Kemp Hannon
Chairman Senate Health Committee
Room 609 LOB
Albany, NY 12247
HANNON@SENATE.STATE.NY.US
Hon. Richard Gottfried
Chairman Assembly Health Committee
Room 822 LOB
Albany, NY 12248
gottfrr@assembly.state.ny.us
Hon. Sam Colman
New York Assembly
(He authored the 1994 NYS alt med law)
Room 939 LOB
Albany, NY 12248
colmans@assembly.state.ny.us
Hon. Joel Miller D.D.S.
New York Assembly
Room 531 LOB
Albany, NY 12248
millerj@assembly.state.ny.us
LETTERS TO THE EDITOR:
I am including the addresses of only the NYC newspapers, but
please write to the letters to the editor of any paper you
know of. Unfortunately, you will need to compose a slightly
different letter for each, because some newspapers demand
exclusivity. Make it 2-3 paragraphs and emphasize how the
potential of loss of treatment affects you personally. Let
your emotion about this issue show. Be sure to include name,
address and daytime phone number. Dr. Burrascano has given
permission for his name to go to the newspapers, but NO
OTHER MD BEING INVESTIGATED HAS GIVEN PERMISSION FOR HIS
NAME TO GO TO THE MEDIA.
1) The New York Times
229 West 43rd St
NewYork, NY 10036
2) New York Newsday
235 Pinelawn Road
Melville, NY 11747-4250
3) New York Daily News
450 West 33rd Street
New Yrk, NY 10001
4) The New York Post
1211 Avenue of the Americas
New York, NY 10036
5) The Village Voice
36 Cooper Square
New York, NY 10003
Att: Ron Plotkin
MEETING WITH NEW YORK STATE LEGISLATORS:
To find the name and phone number of your assemblyman's and
state senator's local office, just call the League of Women
Voters (phone book) . Call to make an appointment, but since
the legislators themselves might not be available, ask to
see whichever aide is interested in health care issues.
At the appointment let them know you are there to ask for
legislative oversight of the DOH which thinks your treatment
should be limited to two-three weeks. We will soon have an
information packet available, but until then give them a
print out of Art Doherty's annotated bibliography on
persistence of infection.
http://www.geocities.com/HotSprings/Oasis/6455/persistence-special.html.
TELL THEM YOUR LYME STORY AND TELL THEM WHAT LOSING YOUR
LLMD WOULD MEAN TO YOU.
If you are unsure what to say, e-mail me for a practice
session. (I don't know what to say either, but Monica gave
us some ideas. She also
said that the legislative aides are usually thrilled that
someone wants to speak to them at all, which made the whole
experience seem less scary to me.)
Thanks all. Go get 'em.
Ellen
============
For updates:
http://www.faim.org/lyme.htm
For NY State representatives:
http://www.senate.state.ny.us/
http://assembly.state.ny.us/
To find other states representatives, check out:
http://www.ncsl.org/public/sitesleg.htm
For NY newspapers:
http://www.naa.org/hotlinks/searchResult.asp?param=NY-New+York&City=1
In order to get the attention of government officials it takes a lot of
letters, calls, etc. Sen Moynihan got so many from the Doc harassment
protest, he contacted the OPMC. Of course, he was told that the ALDF and
other conservatives were the ones who called the shots on Lyme.
Well, the pressure should not let up esp. in the light of such continued
arrogance.
Since many folks have trouble composing letters or the time is short(me
too), Ellen has agreed to have her letter used as a petition. You just have
to copy her letter and at the top write that you agree to the contents of
the letter; include your contact info. You may also copy any others you
feel need to know this information. I think Sen Moynihan could use more
encouragement, too.
Certainly, write your own letters. But if you feel you cannot but want to
make your feelings known, please use this peitition idea. We did this last
spring with the CDC and their position statement.
Thanks and keep up the pressure,
Rita
The following is Ellen's letter and contact info.
-----------
To: gov.pataki@chamber.state.ny.us
Subject:
Att: SINCE THIS LETTER INVOLVES A COMPLAINT ABOUT THE DEPARTMENT OF
HEALTH, I REQUEST THAT IT BE HANDLED BY THE GOVERNOR. A RECENT CONTACT
WITH YOUR OFFICE HAS REVEALED THAT PREVIOUS LETTERS HAVE BEEN
INAPPROPRIATELY REFERRED ON TO THE DEPARTMENT OF HEALTH .
Dear Governor Pataki:
I request your immediate attention to an emergent problem involving the
Office of Professional Medical Conduct of the New York State Department
of Health (OPMC) This issue threatens the future of thousands of people
in New York State who suffer from Lyme disease and its frequently
disabling effects.
As you may know, there is a clear cut controversy within the medical
community as to whether Lyme disease is always curable with short term
antibiotics or whether infection frequently persists and, therefore,
requires longer term antibiotic treatment. Recently, a number of
physicians in New York State who sometimes recommend longer term
treatment for their Lyme Disease patients have been reported for medical
misconduct. along with many like-minded physicians throughout the
country.
While the members of Lyme Disease support groups have seen this as
politically motivated harassment causing considerable expenditure of
time and money by the physicians most involved in treating long term
infection, many have had confidence that an OPMC investigation would be
impartial.
However, a letter to a Lyme disease patient from Dr Marks, executive
secretary of the OPMC, dated Dec 21, 1999 has revealed otherwise. In
explaining how the OPMC determines what is a reasonable standard of
care, Dr. Marks writes, "Rarely, if ever, have the published guidelines
indicated that anything more that (sic) tow(sic)-three weeks of
antibiotics are required to cure Lyme Disease."
This not only contradicts the experience of thousands of Lyme disease
patients, but also ignores a large body of medical literature in peer
reviewed journals validating the existence of persistent infection and
recommending longer term antibiotic treatment. See: Persistence or
Relapse of Lyme Disease - An Annotated Bibliography
http://www.geocities.com/HotSprings/Oasis/6455/persistence-special.html
Long-Term or Repeated Antibiotic Therapy for Lyme Disease - An Annotated
Bibliography
http://www.geocities.com/HotSprings/Oasis/6455/therapy-special.html
Moreover, the statement completely ignores the guidelines published in a
reputable reference, Conn's Current Therapies - 1997, which include
recommendation of longer term antibiotic treatment. These guidelines
were written by Dr. Joseph Burrascano, Jr. , who, ironically, and , I
believe not coincidentally, is one of the physicians currently under
OPMC investigation.
See:
Lyme Disease - Conn's Current Therapy - 1997
http://www.geocities.com/HotSprings/Spa/6772/conns.txt
Since the OPMC begins with an orientation that is biased against long term antibiotic treatment for Lyme disease, we, therefore,
cannot expect fair trials for the physicians under investigation. We
urge your immediate intercession to ensure justice for these doctors.
Sincerely yours,
