NOTE: This Action Alert Has Expired

September 15, 2000

With Dr. B's administrative hearing coming up at the end of October, I know that everyone is eager to know how to help. I think we need to focus on the most effective ways of ensuring that when Dr. B and other LLMD's come up for their hearings , the OPMC knows that the legislature and the public are watching to guarantee fair trials.

My own goal is that by the time Dr. B. comes to trial no one will believe that Lyme disease is an easily treated illness and everyone will be aware of the kind of politics that has led to persecution of Dr. B and other LLMD's.

In short, we gotta make NOISE. Since Dr. B has asked that we not hold a NYC protest against the OPMC, we need to be creative in finding ways to make, uhmm, dignified noise.

Please pass this list on to everyone who might be interested. Please do the things on this list, NO MATTER WHAT STATE YOU LIVE IN.

A) THE DENISE CHAPMAN PRESS CONFERENCE ON WEDNESDAY SEPTEMBER 20th AT NOON.
This is an opportunity for us to not only support a fellow Lyme patient, but also an unusual opportunity to heighten public awareness of the seriousness of chronic Lyme disease. Denise is a NYC emergency medical technician who was bitten by a tick in the course of her work and has been in a much publicized battle with the City to get it to live up to its responsibility to her in this work related illness.   

PLEASE show up at her press conference on Wednesday September 20th at noon at City Hall in Manhattan, directly across from 250 Broadway.   A huge crowd of chronic Lyme patients will help Denise and will let the public see how many of us there are.

B) SENATOR SPECTER WRITING CAMPAIGN.
With the OPMC's decision to proceed with a trial against Dr. B, it is now ABSOLUTELY VITAL that you write a letter to Senator Arlen Specter telling him about difficulties you have faced in getting diagnosed, treated and reimbursed for Lyme disease. If Senator Specter gets enough of our personal stories, he might call for a Senate hearing addressing physician harassment among other critical issues.

Please write your own PERSONAL story AND call everyone you know with Lyme to ask them to do the same - and help them if necessary. PLEASE KEEP A COPY OF THESE LETTERS for future reference as they WILL be needed again.

SEND TO:
Senator Arlen Specter
711 Senate Hart Building
Washington, DC 20510
Att: Erin Quay

OR E-MAIL:
erin_quay@specter.senate.gov

ALSO, if you can, please send a copy of this letter to:
Rep. Chris Smith
2370 Rayburn House Office Building
Washington, DC 20515

C) THE NEW YORK STATE LEGISLATURE:
Those of you who were around earlier in the year are aware of the letter writing campaign to the New York State legislators. The campaign centered around our questions about bias in the OPMC. We requested that the legislature investigate.   Although this campaign was effective in slowing down the onslaught by the OPMC, when the legislature recessed the OPMC went ahead and charged Dr. Burrascano with medical misconduct. So we need to show them that "We will not go away."

Below is a sample letter that can be sent to the NYS legislators. You can either write you own or copy mine, but please do write. The list of people to send this to is below the letter.

Dear ....

I am writing to alert you to an urgent situation in New York State which affects the health of thousands of Lyme disease patients in New York and throughout the country, and to enlist your support and intervention in the situation. Dr. Joseph Burrascano, one of the most highly regarded physicians in the treatment of Lyme disease, has recently been brought up on official charges of medical misconduct by the New York State Office of Professional Medical Conduct (OPMC). The OPMC has claimed that the current investigations of Dr. Burrascano and several other Lyme specialists who follow similar protocols are not at all related to their treatment methods for Lyme disease. Yet at the same time, OPMC has publicly revealed their bias against Dr. Burrascano and his colleagues' longer term approach to the treatment of chronic Lyme disease. In a letter written to Lyme disease patients dated 12/21/99, Ansel Marks, Exceutive Secretary of the OPMC, stated, "Rarely, if ever, have ... published guidelines indicated that anything more than two-three weeks of antibiotics are required to cure Lyme disease." This statement contradicts a significant pool of peer reviewed scientific literature demonstrating the persistence of Lyme disease infection in spite of treatment with three weeks or more of antibiotics.

   Earlier this year, we forwarded to the legislature some of the above mentioned scientific information. Our concern at that time was that a high percentage of Lyme specialists throughout the country had been reported, almost simultaneously, to their state licensing boards, suggesting a pattern of harassment and bias by those who believe that Lyme disease is always easily cured.

At that time we felt that the OPMC's documented bias should preclude it from sitting as judge and jury over those physicians with legitimate scientific differences of opinion. We had asked for legislative intervention to look into this issue. Unfortunately, the legislature recessed before the issue of formal hearings was addressed, and the OPMC launched formal charges against Dr. Burrascano during a time when no intervention was possible.

In short, there is a major controversy within the medical community about the treatment for Lyme disease, and the OPMC has displayed a bias in favor of one side of that controversy. I urge that the legislature launch an investigation of the OPMC to determine whether it is acting impartially in its investigations of Lyme disease physicians. I urge that there be a moratorium on the administrative hearings of these physicians until such time as the impartiality of the process can be assured. I further urge you to create a forum in which the voices of Lyme disease patients can be heard.

Like many other Lyme disease patients, I feel that the action of the OPMC against Dr. Burrascano and other physicians who have been willing to treat chronic Lyme disease constitutes a great threat to my health, if not to my life. Please do not turn your back on the continued harassment of those doctors who have helped seriously ill people during a major medical epidemic. Please do not turn your back on me and thousands of other chronic Lyme disease patients.

Thank you,
(Sign name AND address).

TARGETS:

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. Patricia Acampora
NYS Assembly
Room 725 LOB
Albany, NY 12248
ACAMPOP@ASSEMBLY.STATE.NY.US

Hon. Maureen O'Connell
NYS Assembly
Room 326 LOB
Albany, NY 12248
OCONNEM@ASSEMBLY.STATE.NY.US

Hon. Joseph Bruno
NYS Senate Majority Leader
Room 909 LOB
Albany, NY 12247
BRUNO@SENATE.STATE.NY.US

Hon. Joel Miller
NYS Assembly
Room 531 LOB
Albany, NY 12248
MILLERJ@ASSEMBLY.STATE.NY.US

Hon. Vincent Leibell
NYS Senate
Room 802 LOB
Albany, NY 12247
LEIBELL@SENATE.STATE.NY.US

Hon. Michael A.L. Balboni
NYS Senate
Room 803 LOB
Albany, NY 12247
BALBONI@SENATE.STATE.NY.US

Hon. Stephen Saland
NYS Senate
Room 946 LOB
Albany, NY 12247
SALAND@SENATE.STATE.NY.US

Hon. Fred W. Thiele, Jr.
NYS Assembly
Room 530 LOB
Albany, NY 12248
THIELEF@ASSEMBLY.STATE.NY.US

Hon. Congressman Michael Forbes
3680 Route 112
Coram, NY 11727
JACK.AMES@MAIL.HOUSE.GOV

Governor George Pataki
State Capital
Albany, NY 12224
ATTENTION: Mary Gifford
GOV.PATAKI@CHAMBER.STATE.NY.US
(IF you e-mail Gov. Pataki, please write
Attention: Mary Gifford on the subject line).

Thanks all. There will probably be more things coming up. Mainly we need to remember that (although we may need to go to bed for long periods of time) "We will not go away!"

Ellen
ellenlu@webtv.net

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