Lobby Day Reminder! (from Ellen)

[Guest guest]

LOBBY DAY UPDATE 3/12/01

This Lobby Day post has been updated to include the

name of the person who is currently the contact with

whom to sign up for Lobby Day. As stated in Item VII

below, if you wish to sign up for Lobby Day, please

contact Sue Schriber at SSchr32899@... or call her

at 413-247-5884.

----------

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) PRESS CONFERENCE: At 12 NOON SHARP, 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 is expected to be there to get film for a show that they are

doing on doctor harassment.!!! It is, therefore, very important that

we show up at Lobby Day to be counted.

2) 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. This will be held after the press conference. 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.

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

with 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.

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.

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 or New Paltz 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. If you are a NYS resident, or if

you see an LLMD in NYS:

PLEASE CONTACT;Sue Schriber at SSchr32899@... or

call

her at 413-247-5884. After March 19th, you can also

contact Joan Green at JGreen1471@... or call her

at 212-932-0359. 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]

-Here are the details for Lobby Day. cws

-- In @y..., " C. Orlowski " <cheryl@a...> wrote:

>

>

> LOBBY DAY UPDATE 3/12/01

> This Lobby Day post has been updated to include the

> name of the person who is currently the contact with

> whom to sign up for Lobby Day. As stated in Item VII

> below, if you wish to sign up for Lobby Day, please

> contact Sue Schriber at SSchr32899@a... or call her

> at 413-247-5884.

> ----------

> 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) PRESS CONFERENCE: At 12 NOON SHARP, 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 is expected to be there to get film for a show that they

are

> doing on doctor harassment.!!! It is, therefore, very important

that

> we show up at Lobby Day to be counted.

>

> 2) 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. This will be held after the press conference. 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.

>

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

> with 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.

>

>

> 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.

>

> 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 or New Paltz 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. If you are a NYS resident, or if

> you see an LLMD in NYS:

> PLEASE CONTACT;Sue Schriber at SSchr32899@a... or

> call

> her at 413-247-5884. After March 19th, you can also

> contact Joan Green at JGreen1471@a... or call her

> at 212-932-0359. 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