Skip to main content.

PAST LYME DISEASE ADVOCACY EVENTS

The following links provide a thorough history of advocacy events. These events include rallies, legislative hearings, and action alerts.

2010:

Pennsylvania Lyme Hearing: On June 22, 2010, the Pennsylvania Senate Banking and Insurance Committee held a hearing on Lyme Disease. Speakers included Drs. Maloney, Cameron, Ostroff, and Kimball, as well as patients and advocates.

Hearing Testimony
A Debate Over Lyme Disease Treatment
Docs Oppose SB 1199 On Lyme Disease
Woman with Lyme Supports Bill
IDSA Review Panel Issues Report: In April of 2010, the Infectious Diseases Society of America review panel determined that no changes need to be made to their guidelines. Many patient advocates, along with the Connecticut Attorney General and the International Lyme and Associated Diseases Society, feel these guidelines are flawed. Therefore, the IDSA's adherance to these guidelines has created much controversy.

Lyme advocates look for action from CT AG
IDSA Press Release
IDSA's Final Report
Review Panel Says Lyme Guidelines Don't Need to Change
IDSA Voting Procedures Under Review by CT AG
ILADS Reaction to Decision
Jordan Fisher Smith Letter to IDSA
AG Blumenthal Press Release April 2010
LEAP Arizona Press Release
Blog: IDSA Reports No Change in Guidelines
Flawed Guidelines
AG Chides Lyme Panel
ILADS' President's Letter to IDSA
A disagreement of Lyme disease legislation
A Cautionary Tale
Minnesota Bill and Hearings: On February 8, 2010, supporters and opponents of bill SF-1631 testified in front of the MN Senate. The bill protects doctors who prescribe long-term antibiotic treatment to treat chronic Lyme disease. A MN House hearing is scheduled for HF-2597 on February 17.

MN Lyme Action Group
Chronic Lyme Patients Win Reprieve
Minnesota Lyme Patients have Reason for Hope
Legislators hear testimony about treatment of Lyme disease
Lyme Disease Season
New Hampshire Lyme Hearing: On January 28, 2010, the Health, Human Services and Elderly Affairs Committee of the NH House held a public hearing on Lyme Disease Bill HB 1326. There were over two hundred Lyme patients in attendance.

May Update- Lyme Committee Suggested
Lyme Bill Debated April 2010
Track Treatment of Lyme Victims
Bill Lets Doctors Use Long-Term Antibiotics for Lyme
Audio of Hearing Testimony
Bill Text
Action Alert
Hearing Announcement
Hearing Announcement 2
Virginia Bill: Bill HB 512 has been introduced in the Virginia House of Delegates. The Bill relates to long-term antibiotic treatment for Lyme disease. The single most important aspect of this legislation is that a physician can treat with antibiotics for more than 4 weeks without the fear of disciplinary action.

Bill Announcement
Action Item

2009:

IDSA Review Panel and Hearing: On July 30, 2009, the Infectious Diseases Society of America (IDSA) held a hearing in Washington DC to review its controversial 2006 Lyme disease treatment guidelines. The hearing was streamed live over the internet.

Archived Webcast
Hearing Highlights Broken System
An Account of Pertinent Points
CALDA Blog
Blumenthal Pleased with Hearing
CALDA Pre-Event Press Release
Baltimore Sun article
Newsweek Blog
Greenwich Time article
New IDSA Guidelines Panel, Unbalanced & Biased
Controversy infects Lyme Disease treatment, diagnosis
CT AG Investigation Reveals Flawed LD Guideline Process
CT AG and IDSA Agreement (pdf)
Settlement in Antitrust Case
Action Alerts: The Lyme Disease Association has periodically sent out calls to action for everyone to participate in support of Federal Bill HR-1179 and other items. As with any political action, the participant should first decide if the call to action is consistent with his/her own political and medical views.

LDA's 2009 Action Item #1
LDA's 2009 Action Item #2
LDA's 2009 Action Item #3
LDA's 2009 Action Item #4
LDA's 2009 Action Item #5
LDA's 2009 Action Item #6
LDA's 2009 Action Item #7
LDA's 2009 Action Item #8
LDA's 2009 Action Item #9
LDA's 2009 Action Item #10
Connecticut Lyme Legislation: On February 6, 2009, the Connecticut legislature held a public hearing in Hartford regarding bill HB-6200. The stated purpose of the bill is "to allow physicians to prescribe, administer or dispense long-term antibiotics for therapeutic purposes to patients clinically diagnosed with Lyme disease." Lyme advocates attended and testified in support of this bill. The bill was passed unanimously by the House on April 30 and unanimously by the Senate on May 29. The bill was then signed by Governor Rell on June 21, 2009.

CT Public Act No. 09-128
PR: CT Doctor Protection Bill Signed by Gov. Rell
Rell signs Lyme disease bill in Brookfield
Editorial: Targeting Wrong Offender In Abuse Of Antibiotics
Hearing Videos Feb. 6, May 29, Apr. 30
Proposed Bill HB-6200
Hearing Testimony
Massachusetts Lyme Legislation On September 22, 2009, lawmakers heard testimony about bill H-1148, which was created to protect doctors who prescribe prolonged antibiotic treatment for Lyme disease.

Lawmakers Urged to Intervene
Lyme disease treatment debated

2008:

Congress Looking at Lyme: On September 24, 2008 there was a Congressional Lyme Briefing on Capitol Hill. On September 28, there was a three Congressman debate on the plight of Lyme patients, chronic Lyme disease, and the failure of Mr. Pallone's health sub committee to bring up the Lyme bill, HR 741 (Smith NJ).

Congressional Briefing
Congressional Briefing Report (pdf)
C-Span Video of Lyme Debate
Action Alerts: The Lyme Disease Association has periodically sent out calls to action for everyone to participate in support of Federal Bills S1708/HR741.

LDA's 2008 Action Item #1-2 (Feb - Mar)
LDA's 2008 Action Item #3 (May)
LDA's 2008 Action Item #4 (June)
LDA's 2008 Action Item #5 (Aug)
LDA's 2008 Action Item #6 (Sep)
LDA's 2008 Action Item #7 (Sep)
LDA's 2008 Action Item #8 (Sep)
Sample Letter
Sample Phone Comments
ILADS letter supporting House bill (pdf)
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 Video
Protest Website
Call-in Campaign
Press Release by Lyme Rights (pdf)
LDA commentary on Pallone's position
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
Action Alerts: The Lyme Disease Association has periodically sent out calls to action for everyone to participate.

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

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.

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)
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
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).
Media Coverage Links
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
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.

Frustration of finding treatment adds to pain for sufferers
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