Salisbury, MD – Lyme Disease Presentation

Salisbury, MD – Lyme Disease Presentation

We have funded research projects from coast to coast and have had our projects published in numerous peer-reviewed journals including JAMA, Psychiatric Quarterly, Infection, and Neurology. We were very excited with the publication of one of our projects in Sept 2004 in The Proceedings of the National Academy of Science, (Wei-Gang Qiu et al) on the rapid exchange of genetic material among different strains of Borrelia, a finding which can have a significant impact on the diagnosis, treatment, and prevention of Lyme disease.

Meanwhile, Columbia University Medical Center has announced the opening of a Lyme and Tick-Borne Disease Evaluation Service at Columbia, directed by Brian Fallon, MD, which focuses on patients who are still experiencing symptoms after being diagnosed and treated for Lyme disease and patients who have unexplained psychiatric symptoms that may be due to Lyme or other tick-borne diseases. The goal is to provide a comprehensive evaluation, seeking to also rule out other disorders that may cause the multi-systemic symptoms.

The second publication in another vein, Lorraine Johnson, JD, MBA, executive director of California Lyme Disease Association, an LDA affiliate, and Ray Stricker, MD, president elect of ILADS, published The Treatment of Lyme Disease: A Medicolegal Assessment in the peer reviewed journal Ex. Rev. Anti-Infect. Ther. 2(4),(2004). The authors discuss the medical basis for diagnostic and therapeutic uncertainty in Lyme disease, the issues regarding the legal standard of care that apply to treating physicians and insurers, the role of evidence-based medicine, patient autonomy, patient preference, and informed consent in Lyme disease. This is another article which can be used by patients and physicians to support treatment regimens.

Next I will discuss Poly ticks as Dr. Ed Masters always says.

LDA has worked with the Attorney General (AG) in Connecticut providing written testimony at the first Lyme disease hearings in 1999 (LDA was attending an NIH meeting at the time and could not have personal representation, but had met with the AG at a private meeting prior to the hearings and presented a notebook detailing activities in other states). Subsequently, LDA requested, through its CT affiliate, Time for Lyme, a meeting with the AG and the then health commissioner on Lyme issues. At that meeting, LDA was able to present some preliminary potential strategies to CT officials. At a later private meeting with the Health Commissioner, LDA suggested a regional coalition of states be formed to fight the disease. The Commissioner was open to the idea. LDA would then approach New Jersey (see NJ section).

Prior to the second Connecticut Lyme hearing in 2004, LDA was invited to become a member of the Coalition of CT groups supporting the hearings. LDA was the only non-CT group invited to participate in the coalition. Subsequent to the hearing, the Coalition, including the LDA, was invited to a meeting with the new CT Commissioner of Health to address pertinent issues, particularly the removal of the mandatory lab reporting in CT which produced on paper an ~80% drop in Lyme cases in CT. In 2004, the Health Commissioner invited up to 4 LDA people to participate for free in a state sponsored program for CT employees on how to write grants.

LDA was invited in 2003 by a newly formed CT group advocating for reform in the schools for students with Lyme to meet with the Connecticut Department of Education. Along with its CT affiliate, Time for Lyme, LDA met and discussed ways in which the DOE could help students. Many of our ABCs with Lyme disease pamphlets have been distributed in the schools in Connecticut and the CT DOE referred to this meeting with LDA at the 2004 hearings as evidence they were being proactive.

LDA was also invited in 2004 by the First Selectman in Ridgefield (mayor) to present at and moderate a forum to discuss the formation of a town wide forum on Lyme disease. Many health officials from across Connecticut attended.

LDA has been advising and providing material for an advocate there who has since met with the FL Medical Society and has arranged a meeting shortly with FL Health officials in which the LDA participated by conference call.

LDA has spoken at the last two fully accredited medical conferences in KS/MO in 04 and 03 and has provided its affiliate organization there, LAGKC, with help in preparing a written educational presentation which they made to their state assembly health committee. Additionally LDA provided them with materials and a small grant to prepare packets to distribute to Kansas school nurses.

New Hampshire
LDA was asked for input on a resolution supporting federal Lyme research and state physician education initiatives. The resolution passed both houses in 2005. Additionally, in May 2005, LDA was invited by Governor John Lynch of New Hampshire to speak at the capitol signing of the first NH resolution designating May as Lyme awareness month.

LDA met with the NJ State Board of Medical Examiners (NJSBOME) and presented the issues on doctor persecutions in NJ. In late 2004, the NJSBOME contacted LDA for suggestions for Lyme literate physicians for its review panel. In 2005, all LDA suggestions were accepted by the Board. This is a major policy shift by the Board.

LDA met with then acting Commission of Health Blumenstock in 2001with a team from surrounding states to try and foster a regional alliance which LDA had proposed to then CT Commissioner of Health Garcia who was open to the idea (see CT). NJ officials were lukewarm to the idea and unfortunately, 9/11 happened, precluding future discussions in this area.

LDA was twice invited to speak at press conferences in 2004 by US Senator Chuck Schumer (NY) supporting additional Lyme monies for heavily hit Hudson Valley regions of New York.

LDA has been invited to speak at several forums over the years on Lyme in PA hosted by the House Majority Caucus Administrator and by Congressman Pitts. Additionally, several years ago, LDA and its PA Chapter were invited to Harrisburg to present in the statehouse to the PA House Majority Caucus Committee. LDA and its PA Chapter also worked with Senator Santorum on the Lyme Disease Initiative bill in 1999 and participated in a press conference with Santorum and Congressman Pitts at the Chester County Courthouse in 1999.

In 2005, LDA was invited to Harrisburg by the Honorable Merle Phillips where we coordinated a presentation including several doctors and a lawyer. We presented before a dozen or so insurers and many PA State officials regarding the effects of LD on patients and treating physicians. I addressed the latter area including the impact of the CDC surveillance criteria being misused for diagnostic purposes.

On May 5, I was invited by The PA Majority Policy Committee to the Lyme Disease Summit in York PA. I was on the panel with State Reps and Health officials. Hundreds of people showed up.

The day before the event, Merle Phillips introduced the doctor protection/insurance bill again. LDA and ILADS submitted a joint letter for the passage through the House and the bill is now in the Senate Committee.

In 2002, LDA was an invited speaker at a congressional forum on Lyme disease co-hosted by Congressman Lange in (RI) and Congressman Simmons (CT). LDA received a recognition award from Congressman Lange in for its educational efforts. In 2003, LDA provided an in-service to most of the RI school nurses through the RI School Nurses Association.

Washington, DC/Federal
CHPPM─ LDA was invited to US Army Centers for Health Promotion and Preventative Medicine in Aberdeen Proving Grounds in 1999 to receive a tour of the tick research facility and receive a briefing on the work being performed by the military. LDA was shown a prototype of a handheld lab to be used in the field by soldiers to immediately test a tick that had bitten a soldier so the soldier could be treated if the tick tested positive. The military was also developing a helmet with a heads-up display which would receive data from the GPS system on tick populations and tick infectivity rates. Those populations and rates were then being collected by the military for such a purpose. The person in the helmet could then direct troops around heavily tick infested/infected areas.
CHPPM was also working on pyrethrum-impregnated uniforms at time of manufacture for troops. Those are now being used by troops worldwide that travel to heavily infested areas.

LDA suggested to Congressman Smith at this time that measures need to be put in place to ensure that the result of those technologies were made available to the general public for similar uses and that agencies needed a better coordinating process so that such technology was shared.

Haskin 2003, LDA was able to get a 3 hour meeting at HHS in DC. LDA took a team including more than a dozen major state officials, doctors and advocates nationwide who presented to HHS with supporting documentation. Many of the high ranking officials from CDC and NIH were video teleconferenced into the meeting to hear the presentation. At its conclusion, the government officials were silent despite the evidence LDA had amassed about the lack of focus on the disease, the problems caused by the misuse of the CDC surveillance criteria, and woeful lack of funding provided despite increasing case numbers. Both Congressman Smith and Congressman Pitts provided representatives to the meeting. A year later, LDA received the written answers to some of its suggestions to the CDC which have been posted on the LDA website.

The LDA team also presented the lack of Lyme disease funding commitment to HHS. Unfortunately, Lyme disease has not been taken seriously by the government, and has never received monies or recognition commensurate with its status as the most prevalent vector-borne disease in this country today and the most prevalent vector-borne bacterial disease in the world. Currently, the CDC spends only $5.6 million on Lyme disease and the NIH $28 million.

LDA wants that issue addressed. To that end in April 2005, we went to DC to meet with a number of key legislators.

Santorum/Dodd/Smith/Gilchrest/Kelly─LDA and TFL met with representatives of these offices to provide possible language for developing legislation which could provide balanced research funding and also a task force composed of public and government entities who would act in an advisory capacity to ensure that government agencies worked in a coordinated fashion and that the monies were appropriately addressed toward priority goals.

H.R. 2877 Introduced June 14, 2005 by Congressman Christopher Smith (NJ) ALERT Act for Education and Research and Tick-Borne Diseases