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By: Voices of Lyme
Last Edit: January, 2005

Despite the evidence of persistent infection beyond the 4 week treatment, insurance companies and medical disciplinary boards have adopted the belief that Lyme disease is easily cured. In New York State, the Office of Professional Medical Conduct (OPMC) has targeted for investigation two thirds of the physicians who treat chronic Lyme disease. To protect our access to effective medical care, chronic Lyme disease patients are now fighting for two laws that will stop an unbridled OPMC from inappropriately targeting the only physicians who will treat us.

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. 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 that shows that the Lyme bacterium can survive this 'standard' treatment. (See the first item, the persistence file, at:

DECEMBER 1999 - The medical disciplinary boards of many states had, for some time, been harassing physicians who treat chronic Lyme disease. However, in November 1999, it was announced that the NYS Office of Professional Medical Conduct, following a lengthy hearing, had revoked the license of Dr. Perry Orens, a Long Island physician who treated chronic Lyme disease. (Referred to as Lyme Literate Medical Doctor, or LLMD).

The revocation of Dr. Orens' license, after a more than a forty year record of unblemished practice, focussed the attention of the national Lyme community on New York State. In December 1999, a group of activists organized a protest outside the office of the OPMC in NYC. Lyme patients wrote numerous letters to the OPMC complaining of the unjust revocation of Dr. Orens' license.

JANUARY 2000 - In response to letters from Lyme disease patients, Ansel Marks, the executive secretary of the OPMC , wrote that in judging Lyme disease doctors the OPMC relied on guidelines that indicated that "rarely if ever" were more than 2-3 weeks of antibiotics were necessary to cure the illness.

This was clear evidence that the OPMC had taken sides in the ongoing scientific debate about the treatment of chronic Lyme disease symptoms. The fact that the majority of the LLMDs in NYS had been targeted for investigation by the OPMC, was certainly further evidence of OPMC bias.

With this evidence, NYS Lyme disease patients, supported by patients throughout the country, began to organize, asking elected representatives to prevent OPMC persecution of those doctors who treat chronic Lyme disease.

FALL OF 2000 - A grassroots group known as Voices of Lyme, - working with Pat Smith of the Lyme Disease Assocation, patient advocate Jill Auerbach of the Hudson Valley Lyme Disease Committee and Monica Miller, a lobbyist with the Foundation for the Advancement of Innovative Medicine, - began organizing protests, letter writing campaigns, behind the scenes meetings and in-person lobbying of legislators and other politicians.

Assembly Members Nettie Mayersohn and Joel Miller both became champions of our cause early on in this process and have been invaluable to our cause throughout.

However, it was still up to the community of Lyme disease patients to change the attitudes of other representatives, almost all of whom were ignorant of chronic Lyme disease (some even antagonistic to any mention that Lyme could be chronic).

Thus the period between the fall of 2000 and the fall of 2001 was an extemely difficult time, requiring constant work by the Lyme community.

ASSEMBLY HEARINGS - November 2001 and January 31, 2002. As a result of our lobbying, the Assembly held two public hearings: one on Lyme disease, and one on the workings of the OPMC,

APRIL 2002 - The Assembly unanimously passed a Resolution acknowledging that there is still legitimate scientific controversy about the treatment of Lyme disease and asking that the OPMC "cease and desist" from targeting physicians who treat Lyme

Also in April, the Gottfried/Miller/Mayersohn/Lentol bill to reform the OPMC was introduced into the Assembly, and a similar bill was later introduced by Senator Larkin into the Senate. The bill focussed on giving physicians due process in protecting themselves against OPMC harassment.

This was in response to the January 31st hearing which uncovered unfairness and lack of accountability in the way that physicians in general were treated by the OPMC.

JUNE 2002 - The OPMC Reform Bill passed the Assembly unanimously. However, the bill did not come to a vote in the Senate and, therefore, was not passed by the end of the legislative session in July.

The Lyme disease community has continued to lobby for protection of physicians against OPMC abuse. On May 6th, 2003 and May 18th 2004, New Yorkers traveled to Albany to lobby key legislators. Lobbying of local legislators also continued.

There are two bills in the NY legislature that we would like to see passed, however the primary focus is on the first bill.

1) S4148 (was S5221)/A4724a - This bill changes the way that the OPMC works by adding certain measure of due process so that ALL physicians can protect themselves against persecution by the OPMC.

2) S3000/A7365a - This bill gives two specific rights to physicians who treat chronic Lyme disease. It gives them the right to know their accuser it is not a patient and requires that the OPMC disclose the identity of any experts consulted in bringing charges against a doctor.

The Assembly continues to be supportive of the Lyme issue and has passed the OPMC Reform Bill every year. The Senate has also become supportive and passed the OPMC Reform bill in 2004. However, despite significant pressure to pass the bill, Governor Pataki vetoed the bill in December 2004. The effort to get this bill passed is ongoing.

Thanks to all,
Voices of Lyme