LOBBY DAY DETAILS - PLEASE DISTRIBUTE

[Guest guest]

On March 27th FAIM and a group of New York state activists are arranging

for NYS residents and patients of NYS physicians to go to Albany to

press the NYS legislators to take action that will protect the rights of

Lyme patients to receive effective medical care.

For information as to how to sign up for Lobby Day, please scan to Item

VII below.

Lobby Day has been prompted by the charges of medical misconduct lodged

by the New York State Office of Professional Medical Conduct (OPMC)

against Dr. Horowitz and Dr. ph Burrascano currently

involving these physicians in trials which can result in loss of their

licenses to practice medicine.

Lyme patients believe that these charges and trials are unjust and

result from the bias of the New York State OPMC against physicians who

are willing to treat chronic, persistent Lyme disease (LLMD's) . The

charges against LLMD's have been made despite the fact that there is

significant scientific information validating the persistence of Lyme

disease infection.

Lyme patients further believe that our failure to stop the unjust

prosecution of these physicians will endanger the rights of physicians

throughout the country to treat persistent Lyme disease infection, thus

ending the patients' rights to such treatment .

IMPORTANT NOTE: The original concept of Lobby Day has been broadened to

include non-New Yorkers who are treated by New York State physicians.

Because legislators have made it clear that NYS residents are of primary

importance, residents will be the spokespeople at the office visits with

the legislators. By attending these office visits along with the NYS

residents, those non-New York patients who see NYS LLMD " s will give

powerful, silent support to the contention that the OPMC's actions

effect large numbers of patients.

I. BACKGROUND AND OVERVIEW: Please see

www.angelfire.com/or2/burrally/war.html and www.faim.org/lyme.htm

II. DEMANDS WE WILL MAKE ON LOBBY DAY:

1) We will be requesting that the New York State legislature call a

public investigation/ hearing into the bias of the OPMC in regard to

Lyme disease. We will further request a moratorium on all OPMC

investigations or hearings against LLMD's until such time as our

assertions of OPMC bias have been investigated.

2) We will be asking for changes in the laws governing the workings of

the OPMC which would insure due process for all physicians charged in

the future. We do not want to have to be fighting the same fight for

other LLMD's a year from now. For information about the hoped for OPMC

reforms, please go to www.faim.org/OPMC.htm.

III. ACTIVITIES ON LOBBY DAY:

1) TEACH-IN: and FAIM have reserved a room in the

legislative office building for a teach -in to be conducted by Pat

and an LLMD.   ALL legislative aides will be invited to attend this

teach-in.   A small group of Lyme disease patients will also be in the

audience for the teach in, in order to show support and to put a human

face on the problem.

The teach-in will cover the basic medical information about Lyme

disease, the extent of the epidemic and the science that supports our

contention that Lyme can be a persistent infection.

2) PRESS CONFERENCE: Immediately following the teach-in , there will be

a press conference. has invited the press corp that covers the

news of the capitol. This corp includes wire services such as Associated

Press, so that the story can be disseminated throughout the country.

Nightline has been invited to attend.

3) THE ACTUAL LOBBYING ---OFFICE VISITS TO LEGISLATORS: Simultaneous to

the teach-in, the majority of Lyme patients and friends and family will

meet with members of the health committees of both houses of the

legislature to press for our agenda (See section titled DEMANDS above).

We will go in groups of about 5 people to the offices of each of these

committee members for the traditional 15 minutes alloted for public

lobbying.

The lobbying appointments will be held at the same time as the teach in.

Both must start at 1pm sharp, so that arrival at the legislative office

building should be timed for 12:30.

has already set up a significant portion of the appointments

needed. Going with 4 other people should make it less stressful to walk

into a legislator's office.   (Please see section below, Preparation

for Lobby Day for additional stress relieving measures)

4) THE SMALL NON-NEW YORKER COMPONENT TO LOBBY DAY: Those legislators

who have been helpful to us have been very clear that to be effective

Lobby Day must be an action of New York State residents, thus the plan

for non-New York patients of New York State docs to attend the lobbying

meetings as silent supporters..

In addition, a small group representing

Lyme disease patients in numerous states across the country is being

organized for a SILENT VIGIL which will emphasize that the entire nation

is watching the OPMC's action on Lyme disease. This would consist of

about 40 people who are not patients of New York State LLMD's and thus

will not be directly attending the lobbying meetings. They will carry

signs to show how many states they are representing.   This silent

vigil for non-New Yorkers is being handled by Mark Delmerico

302-425-0949.

IV. PREPARATIONS FOR LOBBY DAY:

Since speaking to legislators is daunting and since we need for the

actual spokespersons to have a tight presentation prepared,

will be available for a meeting to be set up prior to Lobby day

to help us prepare. At that point an information packet will also be

ready for us to bring to legislators.

The logistics of this preparation meeting will be difficult to set up.

For that reason it is particularly important for people to sign up for

Lobby Day early so that the plans can be made. For those unable to

attend the preparation meeting, we will put the plans and information on

line as we approach Lobby Day.

As a beginning primer on just the general techniques in making lobbying

office visits, sends the following. (Information about presenting

our specific agenda will, as described above, be disseminated later).

From :

The key is to tell your personal story briefly and to ask for what you

want.

Some simple office visit protocol, based on generalizations from lots of

visits:

1) Introduce everyone in your party with a one line tie-in for each

person.

2) Quickly introduce the subject of your visit then move one to the

background information. (it will make more sense being placed in context

this way)

3) Acknowledge and address your remarks to any staff present as well,

for they will be doing the actual follow-up.

4) Avoid getting drawn into discussing details with which you are not

familiar It's O.K. to say " I don't know about that, but what's important

to me is... "

5) If the lawmaker starts to accept phone calls, your visit is probably

over and you should politely leave.

6) Prepare for only a 15 minute meeting and only go longer at the

prompting of the lawmaker. Better to have been short and sweet than be

causing inconvenience.

7) Find the positive note on which to end your meeting and be sure to

shake hands.

8) Send a letter to thank the lawmaker for taking the time etc. MM

WE HOPE ALL NEW YORKERS AND PATIENTS OF NEW YORK STATE PHYSICIANS

ATTEND!!!!:

Having mentioned the importance of preparation for those who will speak,

I want to add that NUMBERS are extremely important. So if you feel

unable to speak to the issues, please sign up for Lobby Day anyway.

There will be enough people going to see any given legislator that you

will not have to speak. We need you to show up no matter what.

V. ATMOSPHERE AT THE LEGISLATIVE OFFICE BUILDING: The legislative office

building where all the activities will take place is wheelchair

accessible. However, has asked me to be sure that attendees are

prepared for an extremely crowded, pushy and noisy atmosphere in the

building. As I write this I am torn, because I don't want to scare

people away, but on the other hand people need to know the conditions in

advance in order to make their choices. On the positive side, we are

hoping to be done with our activities at about 3:30, so that the time

spent in the building might be manageable for most.

VI. TRANSPORTATION:

We will try to arrange for transportation but need a head count first.

The very, very tentative idea is to charter a bus to leave from Melville

on Long Island, pick up in Manhattan, then in Westchester, (probably in

Tarrytown,) with the next stop probably in Kingston and then on to

Albany. Again, all of this depends on numbers and at this point is only

a very vague idea, but I just want you to know there is the possibility

of a bus charter.

VII .PLEASE SIGN UP FOR LOBBY DAY AS SOON AS POSSIBLE: Because issues of

preparation and transportation have to be dealt with , please sign up

for Lobby Day ASAP.

PLEASE CONTACT; Joan at JGreen1471@... or telephone at 212-932-0359

or Lynne at lynnesteve@... at 212-982-6602.

Let them know your phone number, where you live, particularly your zip

code and whether you think you might need help with transportation.

ALSO, please let them know whether you can be a spokesperson or if you

want to be on the list of people who will not be expected to speak.

-------------------

Thanks so much to everyone in the Lyme community for their support and

help. For those who cannot be involved in this project, either because

you are not directly connected with NYS or because you are physically

unable to come --- we know you are all there with us in spirit. We are

a community of very sick people, but we are keeping our promise that we

will not go away.

www.angelfire.com/or2/burrally/song.html.

Thanks,

Ellen

[Guest guest]

Thank you, New Yorkers, for all you are doing.