The New York Lyme Disease
Controversy

Background: / The Burrascano case / The scientific controversy / History of protest

NYS Lyme Resolution Assembly Passed Resolution that OPMC desist!

Lyme In the News Including coverage of FAIM events by major US media

The Campaign Who, how, and what for protest letters

Latest News - 6/9/2003 Assembly bill A.4274a is passed by Assembly.

5/23/2003 Senate companion to Assembly bill is introduced S.5221 by James Seward. In Rules Committee due to the late introduction but still controlled by Health Chair.

May 29, 2002 Lyme patients protest outside the office of Senator Kemp Hannon, upset with his appearance of neglect as Health Committee chairman on the issue of OPMC misbehavior over Lyme disease. Covered by WNBC.

May 24, 2002 OPMC Reform Bill is introduced in the NY Senate as S.7466 by William Larkin (R) Lower Hudson Valley Region.

May 14, 2002 Assembly OPMC Reform bill A.11330 passes Health Committee Vote. Bill is now reported to Codes Committee.

April 22, 2002 NYS Assembly Resolution passes unanimous floor vote -- with over 103 sponsors from both sides of the isle -- a remarkable feat in this usually partisan legislature. See link above.

April 22, 2002 Dr. Burrascano receives the awaited decision by the Adminstrative Review Board. The ARB affirms the hearing panel's determination that OPMC was prosecuting a bias in a medical science dispute not misconduct. Both decisions are now available on the OPMC website. Facinating reading... See more details below. Activists note that unlike other cases, the administrative law judge in Dr. B's trial allowed him to present medical literature into evidence which justified his method. This evidence very much influenced the panel, which points to the need to reform OPMC process law so that medical literature evidence is allowed in all OPMC hearings. See OPMC reform button at left.

Burrascano Exonorated

In a decision received 11/08/01 and recently affirmed on appeal, Dr. Burrascano was exonerated in relation to most of the 39 charges that the NY OPMC brought against him. Isolated findings of guilt remain for which the BPMC would impose a minor sanction, however, neither the findings nor the penalty would prevent him from continuing to practice or to treat Lyme patients according to his best judgement. Unique to Dr. B's case, was the admission of a considerable amount of medical literature evidence, which is unusual in New York. This point reinforces the need for reform so that others, similarly charged, may use the literature they rely on in practice to defend their treatment decisions as they have not commonly been able to do.

Furthermore, both the hearing panel decision and that of the Adminitrative Review Board crticized the expert relied upon by OPMC as an expert investigator and as their expert witness at trial for reading the patient records selectively, being in error about their content, and failing to acknowlege his error on cross examination. This reinforces the need for reform of the early investigative stage so that such bias and incompetence could be ferreted out.

Excerpts
from the Burrascano decision:

"With respect to incompetence/ gross incompetence, the petitioner [OPMC] failed to meet its burden of proving by a preponderance of the evidence that Respondent [Dr.B] lacked the requisite skill or knowledge to practice medicine. The issues raised in this case pertained primarily to a medical debate in this field, rather than a demonstrated lack of competency by the Respondent."

..."The Hearing Committee recognizes the existence of the current debate within the medical community over issues concerning management of patients with recurrent or long term Lyme disease. This appears to be a highly polarized and politicized conflict, as was demonstrated to this committee by experts testimony from both sides, each supported by numerous medical journal articles, and each emphatic that the opposite position was clearly incorrect… What clearly did emerge however, was that the Respondent's approach, while certainly a minority viewpoint, is one that is shared by many other physicians. We recognize that the practice of medicine may not always be an exact science, "issued guidelines" are not regulatory, and patient care is frequently individualized.

" We are also acutely aware that it was not this Committee's role to resolve this medical debate, but rather to answer the questions raise in the statement of charges." Read decisions on the OPMC website.

While some would say that this proves the system works, we say this proves the system is broken because all this heartache and expense didnt have to happen. There are methods for catching runaway prosecutions, and all other courts of consequence have them. --See OPMC Reform button at left

Background

Current Cases As of 5/10/02
Dr. Joseph Burrascano, author of guidelines that have been followed by many physicians who treat chronic Lyme disease, was exonerated first in the decision of his hearing panel, and then again when the Administrative Review Board refused the appeal by OPMC and affirmed his exhonoration on all the charges relating to Lyme disease. See above.

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 based on the finding that the hearing panel was supposed to have consisted of two physicians and a lay person but that the lay person was not a "lay person" but a Physician's Assistant. OPMC filed for an appeal of the decision to the state's highest court, the Court of Appeals owing to the Appellate precedent which is causing mistrials and reversals of other cases where the lay-person on the panel is questionably lay.

Four other doctors who do not now wish to become public are under investigation by the OPMC in relation to the treatment of Chronic Lyme.

The 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 scienbtific 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.

History of the political campaign
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 FAIM, and NYS Assembly members Nettie Mayersohn and Joel Miller who is a dentist as well. The strength and courage that was shown by hundreds and 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.

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.

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.

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.

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.

INCREASE IN LOBBYING EFFORTS: Assemblymembers Miller and Mayerson held another meeting with the representatives of Dr. Novello and Lyme activists (on March 26th. 7) 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 Yorkershave 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.

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.

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.

The tide turns: On November 27, the New York Assembly Health Committee held a public hearing on the Lyme disease controversy on in Albany. A hearing room seating 400 was nearly packed with Lyme patients, and while the NY health department did now show up to testify or observe, the insurance lobby was likely very sorry it did. The members of the Health committee asked very pointed questions of the insurance representative, Alan Muney of Oxford Health Plans -- such as Assemblyman Joel Miller's "just how many patients will it take?" to satisfy Oxford that long term Lyme disease exists. While most of the testimony centered on the science of diagnosis and treatment, many presenters pointed to collusion between insurers and OPMC in suppressing the real truth about long-term illness and the appropriateness of long-term treatment. FAIM's Howard Hindin, and Pat Smith of the Lyme Disease Association, both honed in on this theme with great success. The hearing was covered by New York NewsDay, the Poughkeepsie Journal, the Legislative Gazzette, and the public television journal, Inside Albany. See hearing transcript, (oral testimony only).

Long-term Lyme disease figured heavily as well in the public hearing on OPMC reform, held on January 31, 2002 in NYC. See OPMC reform button at left.

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