NOTE: This Action Alert Has Expired
www.lymeinfo.net

EVERYONE will meet at 12 NOON SHARP in the third floor terrace of the legislative office building. The 3rd floor terrace is actually ground level. (the first and second floors are underground). HOWEVER, you must sign up to go. To Attend Contact:
Sue Shriber at (SSchr32899@aol.com)
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Updated March 8- towards bottom.
March 10, States needed
Driving Directions: http://assembly.state.ny.us/directions/
March 13 update (Link Expired)
"Access to Effective Care is in Jeopardy"
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LOBBY DAY UPDATE 3/18/01 - PLEASE DISTRIBUTE

On March 27th, The Foundation of Innovative Medicine (FAIM) and a group of New York State Lyme disease activists are arranging for NYS residents and patients of NYS Lyme disease physicians to go to Albany for Lobby Day. We will press the NYS legislators to take action that will protect the right of Lyme patients to receive effective medical care.

For information as to how to sign up for Lobby Day, please scan to Item VIII 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. Richard Horowitz and Dr. Joseph 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.

Since Nightline Has indicated that they will be covering Lobby Day, it is particularly important that as many people who are eligible to attend do attend. We need to make a strong showing.

I. WHOSE PRESENCE IS URGENTLY NEEDED:
1) RESIDENTS OF NEW YORK STATE.
This is esssential because legislators will be most influenced by voting constitutents. Friends and family are needed, as well. Sign up information for New Yorkers is in Item VIII below.

2) NON-NEW YORKERS WHO ARE TREATED BY NEW YORK STATE LLMD'S.
This is very important to give the legislature and the media a sense of how many patients are directly affected by the OPMC's actions. Friends and family also. Sign up information for non-New Yorkers treated by NYS LLLMD's is in item VIII below.

3) NON-NEW YORKERS WHO ARE NOT TREATED BY A NYS LLMD.
We need one or two patient representatives from each state for a Silent Vigil that will be held to impress the legislature that the entire nation is watching what happens in NYS. Since the number of people who can participate is limited to only a few from each state, we are asking those who are interested to call Mark Delmerico at 302-425-0949 to sign up for this Silent Vigil.

II. BACKGROUND AND OVERVIEW:
Please see www.angelfire.com/or2/burrally/war.html and www.faim.org/lyme.htm

III. 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 .

IV. ACTIVITIES ON LOBBY DAY:
1) PRESS CONFERENCE:
At 12 NOON SHARP, there will be a press conference. Monica Miller, the FAIM lobbyist who has worked closely with the Lyme community for more than a year, 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. All Lyme patients and family who show up at Lobby Day will attend the press conference.

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:
Monica Miller and FAIM have reserved a room in the legislative office building for a teach -in to be conducted by Pat Smith and an LLMD. This will be held after the press conference. 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

Monica has set up appointments with all important legislators. 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:
In addition, a small group of about 40 people 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. The members of this group would be those non-New Yorkers who do not see NYS LLMDs and thus will not be attending the lobbying meetings discussed in number 3 above. 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.

V. PREPARATIONS FOR LOBBY DAY:
Since speaking to legislators is daunting, and since we need for the actual spokespersons to have a tight presentation prepared, Monica Miller will be meeting with those people signed up for Lobby Day to help prepare us for our lobbying. THIS PREPARATION MEETING WILL BE HELD ON THURSDAY, MARCH 22ND AT 6:30 pm in Manhattan at Cabrini Hospital, 227 East 19th Street, in Grace Hall.

For those unable to attend the preparation meeting, we will put the plans and information on-line after the preparation meeting.

As a beginning primer on just the general techniques in making lobbying office visits, Monica sends the following. (Information about presenting our specific agenda will, as described above, be disseminated later).

-From Monica:
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. We need you to show up no matter what. You do not have to be a spokesperson.

VI. ATMOSPHERE AT THE LEGISLATIVE OFFICE BUILDING:
The legislative office building where all the activities will take place is wheelchair accessible. However, Monica 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.

VII. TRANSPORTATION:
We have reserved a bus that is modern and comfortable. It is a kneeling bus which has a lift and can accommodate two wheelchairs. It has a bathroom. The last details of pick up will be posted this week, but the plan is to pick up in Melville, Manhattan, Hawthorne and New Paltz before getting to Albany.

VIII. 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@aol.com or call her at 413-247-5884. After March 19th, you can also contact Joan Green at JGreen1471@aol.com 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.
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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

HI FOLKS,

At long last, here is the bus schedule for Lobby Day. Driving directions to the points of pickup are further down the page.

PLEASE BRING WITH YOU TO THE BUS YOUR CHECK FOR $23 MADE OUT TO "MONICA MILLER - GOVERNMENT RELATIONS." (If people cancel at the last minute or do not show up for the bus, we hope that they will contribute their $23 share by mailing it to Monica Miller at FAIM, PO Box 7016, Albany, NY 12225)

PLEASE ARRIVE AT THE PICK UP POINT ABOUT 10 MINUTES EARLY. WE NEED T0 PULL OUT AT THE TIMES INDICATED BELOW IN ORDER TO GET TO ALBANY ON TIME.

We are not going to be able to make a rest stop on the way up, unless by some miracle we move more quickly than expected. There is a bathroon on the bus, so nobody panic.

Since the bus is beginning to fill up, if you change your mind about using the bus, please contact Sue (413-247-5884) or Joan (212-932-0359)

Ellen

ITINERARY FOR BUS CHARTER TO ALBANY ON 3/27 BY VOICES OF LYME
1) 6:30 A.M. -- MELVILLE, LI. LEAVE WALDBAUM SHOPPING CENTER. Rte. 110 in Melville.
2) 7:30 A.M. -- MANHATTAN. LEAVE 40Th Street Between 3rd Ave. and Lexington Ave. in Front of Au Bon Pain.
3) 8:30AM -- LEAVE HAWTHORNE, NY IN FRONT OF ALL WESTCHESTER - SAW MILL MULTIPLEX CINEMA at 151 Saw Mill River Road (Rte. 9A).
4) 10 AM -- LEAVE NEW PALTZ, NY AMES SHOPPING CENTER, IN FRONT OF PLAZA DINER, RTE. 299 West.
5) 11:30 AM -- ARRIVE ALBANY EMPIRE STATE PLAZA IN DOWNTOWN ALBANY

RETURN FROM ALBANY           
1) 4:30 PM --   LEAVE ALBANY FROM EMPIRE STATE PLAZA
2) 5:45 PM -- ARRIVE NEW PALTZ
3) REST STOP - ABOUT HALF AN HOUR TO GET FOOD
4) 7:45 PM --ARRIVE HAWTHORNE
5) 8:45 -- ARRIVE MANHATTAN
6) 9:45 -- ARRIVE MELVILLE, LI
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1) DRIVING DIRECTIONS TO MELVILLE PICK UP: From Eastern Long Island: Long Island Expressway (495) West to exit #49 North (Rte. 110) Melville. Go for approximately 1 mile on Rte. 110 North to Waldbaum's which will be on your right (just north of Northern State Parkway).
2) TO HAWTHORNE PICK UP: 87North to 287 East to Exit Rte. 9A North. Continue on Rte. 9A North for 3 miles to All Westchester - Saw Mill Multiplex Cinema in Hawthorne. It will be on your left.
3) TO NEW PALTZ PICK UP: 87 North to New Paltz exit. Turn left and get onto Rte. 299 West. At second light make a right into Ames Shopping Center and go to the Plaza Diner located at front left of shopping center.

Feb 16, 2001 Posting (Link Expired)

Art's "Lyme Disease in New York"

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