PAST LYME DISEASE ADVOCACY EVENTS

The following links provide a thorough history of advocacy events. These events were mostly grassroots efforts, organized and attended by patients and their loved ones.

2008:

Lyme Rights Rally: On May 7, 2008, Lyme patients protested at NJ Congressman Pallone's office to urge him to get the Lyme disease bill (HR-741) out of the House Health subcommittee for a vote.

Protest Website
Call-in Campaign
Protest Photos
Press Release by Lyme Rights (pdf)
LDA commentary on Pallone's position
Lyme disease patients say Pallone stalling bill's progress
Protest calls attention to Lyme disease bill
Protesters ask Pallone to support Lyme bill
Press Release by Congressman Pallone

Dr. Jones' Case: Lyme patients and professional colleagues believe leading Lyme pediatrician Dr. Charles Ray Jones was wrongly charged by the Connecticut state medical board. Many patients and advocates attended his hearings throughout 2006 and 2007 to show their support for Dr. Jones. The Board made its decision in December 2007. In January 2008, Dr. Jones filed a Motion for Reconsideration and to Vacate the decision. In February, a judge put the reprimand on hold. It didn't end there. A new set of charges were brought against him, and hearings for these charges began in May 2008.

Info about 2008 charges
May 2 Hearing notice
January 2008 update
CT Licensing Board Decision
Learn about Dr. Jones
Sandy's summaries of each hearing day
November 16, 2006 Hearing
June 22, 2006 Hearing & Background Info
Letters from Dr. Jones

2007:

Connecticut Meeting: On December 18, 2007, legislators and notable leaders in the Lyme disease community gathered at the Connecticut Legislative Office Building to discuss issues related to access to care for Connecticut residents suffering from chronic Lyme disease.

Press Release: Connecticut Residents at Significant Risk

San Diego Lyme Walk: On October 6, 2007 there was a walk in San Diego CA coinciding with the IDSA's Annual Convention. Both the CALDA and IGeneX applications for a booth were denied; despite claims from the IDSA president that "we are always prepared to consider new evidence or new perspectives" and "resist any efforts to prevent the dissemination of objective, science-based recommendations."

Notice about the Walk
IDSA Action

Atlantic City Protest: On June 27, 2007 patients gathered to protest proposed amendments to the current surveillance case definition for Lyme disease.

Protest Website
Atlantic City Lyme conference draws pickets

Action Alerts: The Lyme Disease Association has periodically sent out calls to action for everyone to participate in.

LDA's 2007 Action Item #1 (Feb.)
LDA's 2007 Action Item #2 (Feb.)
LDA's 2007 Action Item #3 (Mar.)
LDA's 2007 Action Item #4 (Sep.)

UK Lobby for Lyme: On behalf of all people affected by Lyme disease in the United Kingdom, Lyme Disease Action has been undertaking a parliamentary lobby 'Lobby for Lyme' to raise awareness of Lyme disease and the issues surrounding it with their democratic representatives.

UK Lobby Website
Press Release

Connecticut Legislative Hearing: The legislature's Public Health Committee will held a hearing in Hartford on Monday, Feb. 26 to consider Bill 5747 to reinstate mandatory lab reporting for Lyme disease.

No current links

2006:

Lyme Rights Rally: Approximately 300 patients protested the IDSA Guidelines at Westchester Medical Center

Rally Website
Pat Smith's Speech
'Lyme Wars' patients rally in Westchester
Protest Photos
Highlights of IDSA Guidelines with Commentary (pdf)
Lyme Disease Patients Denied Treatment Following New Guidelines

Controversial Guidelines Released and Challenged: The IDSA released Lyme guidelines that many opponents feel pose a risk to the health of massive numbers of patients. Efforts are underway in response the release of these guidelines.

Crime Against Lyme Action Alert 1
Crime Against Lyme Action Alert 2
Crime Against Lyme Action Alert 3
Crime Against Lyme Action Alert 4
Crime Against Lyme Action Alert 5
Petition for those concerned about guidelines
ILADS Demands Retraction of New IDSA Guidelines (pdf file)

Lyme Rights Rally: On June 2, 2006 patients held a Lyme Rights Rally to gain recognition for this national health crisis.

Photos
Pat Smith's Speech (pdf file)

2006 Action Alerts: Several efforts are underway to protect LLMDs' right to practice.

Texas Mobilizing to Protect LLMDs
Dr. Jemsek Remarks to NC Medical Board
Jemsek Petition

2005:

Massachusetts Public Hearing on Lyme: The Joint Massachusetts Legislative Committee on Public Health held a Public Hearing on Lyme Disease on Wednesday, October 12th in Boston, MA. The MA House of Representatives Committee on Public Health held a forum on Friday, July 8, 2005.

Pre-Event Info
Pat Smith's Testimony
Pervasive Infection, Elusive Diagnosis (free registration)

Maryland Lyme Hearings: On March 10 & 11, 2005 the Maryland legislature held hearings on 2 separate bills for Lyme disease.

Info About Hearing & News Coverage
Pre-Event Info

2004:

NY Lobby Day 2004: On May 18, 2004, Lyme patients from all over New York state travelled to Albany to urge legislators to pass 2 important bills.

Pre-event info

California Hearing: On February 25, 2004, the California Senate Health and Human Services Committee held a hearing on Lyme disease issues in diagnosis and reporting.

Transcript
Survey (pdf file)

Connecticut Hearing: On January 29, 2004, the CT Department of Public Health and the CT Attorney General's Office held a hearing regarding Lyme Disease.

Transcript
Lyme Coalition Plans Action
Local Activists Attend Hearing on Lyme

2003:

NY Lobby Day:On May 6, 2003, New Yorkers with Lyme disease travelled to Albany, NY, to lobby state senators in support of two bills currently in the Assembly.

Feedback from the day

Letter Writing:The following letter writing campaigns took place in 2003.

NY Times: Letters to Editor
Rhode Island Group Requests Letters
Dr. Fallon Requests Letters
LDA Requests Letters from CT Residents

2002:

Legislative Action: The following Resolutions and Bills were passed in 2002.

NYS Assembly Resolution Passed Unanimously
Rhode Island Diagnosis and Treatment Act (.doc)
Resolution of New England Governors

Fundraisers: Several events were held in the Fall of 2002 to raise funds for Lyme disease research, prevention awareness, etc.

At the Net, Sept. 21, 2002
Lyme Jam, Oct. 12, 2002
Time for Lyme, Oct. 18, 2002
Defense Funds Fundraiser

Protest of Conference: On August 20th, 2002, more than a hundred people protested the bias of The Ninth International Conference On Lyme Borreliosis and other Tick-Borne Diseases. The conference, held at the Grand Hyatt in New York City from August 18-22nd, failed to allow presentations regarding the clinical side of Lyme disease.

Feedback
Pre-Event Press Release

Protest of NYS Senator Kemp Hannon: On May 29th, 2002, more than a hundred people demonstrated outside the Long Island office of Senate Health Committee Leader Kemp Hannon, protesting what they see as Hannon's total passivity and disinterest in protecting patient care against insurance company misuse of state agencies.

MSNBC: "Lyme Disease Sufferers Protest"
Hannon Holds Health Bill Hostage
pre-event info

Rhode Island Hearing: On April 8, 2002 and April 17, 2002 patients, advocates and medical professionals testified in Rhode Island before the Governor's Commission on Lyme Disease and Other Tick-Borne Disorders. It was a riveting evening with lively discussion and testimony.

Commission Report
Forum August 7, 2002
The RI Bill (pdf file)
Pat Smith's Testimony
ProJo News: Input Sought for Hearing

New York State OPMC Reform Hearing: On January 31, 2002, Lyme patients from across the nation traveled to NYC to attend a NY State Assembly Committee hearing to investigate the disciplinary process of Physicians. This hearing was important to Lyme patients because the licensing board has been targeting and attempting to revoke the licenses of doctors who are diagnosing and treating chronic Lyme disease patients.

Post-hearing info
Pre-hearing info
Transcript (Verbal Testimony)
NY DOH/OPMC Testimony
Monica Miller's Testimony
Pat Smith's Testimony

2001:

New York State Lyme Hearing: On November 27, 2001, hundreds of Lyme disease patients traveled to Albany to attend a New York State Assembly Health Committee hearing focusing on the issues surrounding chronic Lyme disease.

Complete Verbal Testimony
Hearing website
"Insurers criticized for denial of Lyme treatment coverage"
"Group cites targeting of doctors who treat chronic Lyme disease"
"Lyme Disease Hearing to Draw Activists"
"State panel to focus on Lyme disease"
Press Release

"TOFU" National Convention: On August 12, 2001, "Ticked Off and Fed Up" organized a national convention for Lyme advocates. The event took place in Gettysburg, PA. On August 11, TOFU also organized "Lyme-Aid 2001", a benefit concert featuring country music singers.

TOFU website

MOW 2001: (March on Washington) May 23, 2001

LIFT Bill
See Lyme Society news

NY Lobby Day: On March 27, 2001, a group of NY State Lyme residents traveled to Albany to request that the NYS legislators take action to protect the right of Lyme patients to receive effective medical care. In addition, there was a visually-loud silent vigil, with representatives from all over the country, to proclaim that the nation is watching the NY OPMC. They are outraged that NY's policy is having a chilling effect on their own doctors and therefore their own treatment.

Announcements
From FAIM site

Lyme FDA Vaccine Hearings: On January 31, 2001 Lyme vaccine recipients who have had an adverse reaction told their stories to an FDA panel.

Transcript from Hearing
WebMD: "Is the Lyme Disease Vaccine a Lemon?"
Pre-event posting (Link Expired)

2000:

Burrascano Rally: On November 9, 2000, patients and doctors gathered in Manhatten to show support for Lyme doctors and to call for an investigation of the OPMC (Office of Professional Medical Conduct, medical licensing arm of the NY Department of Health).

Justice for Dr. Joe Website
Media Coverage Links
Bill's Rally Pictures
Additional Info
NY Times: "Lyme Doctors Rally

Philadelphia "Teachout": On November 1, 2000, members of the Lyme community gathered outside a scientific meeting to question biased teaching by Allen Steere, MD.

Pre-Event Announcement
News coverage of Nov 1 Teach-out
Press Release

Manhatten Steere Protest: "Steer Clear of Steere!" On June 1, 2000, Lyme patients and advocates gathered outside the Hotel Pierre in NY to protest the ALDF honoring of Allen Steere, MD. Protesters publicly expressed their indignation at the honoring of a physician who has caused suffering to so many lives.

Press Release

March on Washington: "Wake Up Washington!" On May 3, 2000, Lyme community representatives gathered outside the capitol building to increase awareness about this political disease, and voice their concerns. Following the March, these lyme advocates met with their representatives concerning various Lyme Disease issues of immediate concern.

Press Release
Katahoula's Photos

Gettysburg Rally: "Ticked Off and Fed Up". On April 8, 2000, members of the Lyme community gathered in Gettysburg to voice their objections to harassment of their physicians, and to fight for their rights to have their physicians treat their tick-borne diseases.

Support Group Photos
Some Feedback

Texas Lyme Hearing #'s 1 and 2 and 3: March 16 and May 9 and November 15 (?), 2000. The Texas Senate Committee on Administration held hearings to investigate Lyme disease prevalence in Texas, as well as the often inadequate medical care received by patients in Texas suffering with this debilitating disease.

Real Audio hearings
Minutes of March 16 hearing

Ventura California: Wherever "they" go, we will be there! On Janurary 19, 2000, patients gathered to demonstrate against speaker Allen Steere, who wrongfully, and to the harm of many, promotes that Lyme is "overdiagnosed and overtreated".

Press Release
Questions to ask Steere

1999 & Prior:

OPMC protest : On December 8, 1999 members of the Lyme community gathered outside the Office of Professional Medical Conduct in Manhatten to Protest the Harassment of Lyme Doctors, following the license revocation of a lyme-treating physician.

Press Release
Report from MisTick
Response from the OPMC
Website on Protest

The NIH Protest: On November 3, 1999 members of the Lyme community gathered at the NIH in Washington, DC to protest the NIH's inappropriate recognition of Allen Steere as an "astute clinician".

Guestbook responses to the above article
Website with Pictures

Public Hearing: On February 24, 1999 CT Attorney General Blumenthal cosponsored a hearing on Lyme.

Hearing Transcript

Ticked Off Rally: On May 21, 1997, Lyme patients protested Yale's annual Lyme conference.

Rally Pictures