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 Hon. Sam Colman New York Assembly (He authored the 1994 NYS alt med law) Room 939 LOB Albany, NY 12248 Hon. Joel Miller D.D.S. New York Assembly Room 531 LOB Albany, NY 12248 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. 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: For NY State representatives: To find other states representatives, check out: For NY newspapers: 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: 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 Long-Term or Repeated Antibiotic Therapy for Lyme Disease - An Annotated Bibliography 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 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,
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