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Rehoboth Beach, DE – Remarks of Pat Smith at Atlantic Sands Conference Center

June 5, 2003

Rehoboth Beach, DE – Remarks of Pat Smith at Atlantic Sands Conference Center

REMARKS OF PAT SMITH AT ATLANTIC SANDS CONFERENCE CENTER, REHOBOTH BEACH, DE JUNE 4, 2003

I am Pat Smith President of the Lyme Disease Association, a national all-volunteer non-profit dedicated to Lyme disease prevention, education and fundraising for research.

A positive outcome of my job is the opportunity to meet wonderful people across the country. The person responsible for bringing this event together today is Tammi Abbott, from Rehoboth Delaware, one of those wonderful people. She is compassionate, knowledgeable, and has a drive to do something about the spread of this disease. I thank her for the opportunity today to educate you all about the most prevalent vector-borne disease in this country and the most prevalent vector-borne bacterial disease in the world, Lyme disease. Tammi called our toll free information line for a doctor referral and was soon communicating with one of our NJ County reps, Marie Moore, and that is how Tammi learned about the LDA. On Tammi’s behalf and behalf of the LDA, I thank all of you for coming today. I especially thank Mrs. Sarah Brady for finding time in her busy schedule to come and hear the presentations today. She is an inspiration to all of us.

A Q&A session will follow after all three presentations have been completed.

ABOUT LDA & RESEARCH PROJECTS
LDA has 5 affiliates across the country, other non-profits working for the same goal (NJ, PA, KS/MO, CA, and CT) and three LDA chapters in PA, RI, and MA and a support program and a coalition partner in NY. All recognize that cooperation is the key to solving this tick-borne disease problem. To that end, LDA and its affiliates have raised millions of dollars to try to eradicate Lyme disease.

Some of the projects LDA has funded coast-to-coast have been published in peer reviewed scientific journals including JAMA. Several past projects LDA has funded include work on problems with Lyme disease testing, neurocognitive deficits in children, Lyme bacteria in the gastrointestinal system. It is also funding studies to determine if semen are present in sperm and/or in cervical tissue, the genome (genetic map) of the bacteria in the lonestar tick causing Lyme, where the bacteria hides in the CNS (monies from joint fundraiser with our CT affiliate), and effectiveness of natural tick controls. LDA also has an exciting genetic research project underway at University of Medicine & Dentistry New Jersey, UMDNJ. That material will be presented preliminarily at the LDAs medical conference co-sponsored with Columbia University to be held November 14, 2003 in Philadelphia with CMEs awarded to physicians and other health care providers. The public is also invited to register. The International Lyme & Associated Diseases Society, ILADS, conference will follow November 15 & 16 and that conference is only open for ILADS members and non-member physicians.

LDA and one of its affiliates, Time For Lyme (TFL), formerly the Greenwich Lyme Disease Task Force, are now in partnership with Columbia University to open an endowed chronic Lyme disease research center to be housed at Columbia. We have about $1.8 million remaining to reach the $3 million necessary to open the center. We are beginning a national campaign to raise the remainder. Oscar-nominated actress Mary McDonnell, the LDA’s national spokesperson, is supporting our efforts and will be part of the national fundraising campaign. Interested donors can send contributions earmarked for the center to the LDA. This will be the first center anywhere in the world devoted to chronic Lyme disease. It will use state-of-the-art brain imaging and bring an interdisciplinary approach to the study of the disease. Researchers from across the country will be able to apply for funds from the center. Dr. Brian Fallon who is a world noted researcher on neurologic and psychiatric disease will be its director.

While awaiting the remaining funds to get a dedicated researcher at Columbia, LDA and TFL have funded several projects already underway at Columbia University including one which will examine whether SPECT scans can be used to differentiate patients with LD with neurocognitive complaints from patients with anxiety/depressive disorders and from controls. Another study will determine whether neuronal degeneration is present in LD patients indicated by a decrease in levels of certain metabolites, and another will look at the full spectrum of proteins found on the Lyme disease bacteria.

FEDERAL INITIATIVES
Unlike other diseases, a discussion of Lyme is often not medical but political. The political climate dictates what the disease is, who can treat it, how it can be treated, and who gets treatment. Lyme is the most prevalent vector-borne disease in the U.S, yet is rarely given the weight it deserves. Patients frequently cannot obtain diagnosis, treatment, insurance reimbursement, disability, education or even understanding from their families and peers because treating physicians throughout the country have faced a variety of licensure sanctions including being supervised, fined, not allowed to treat Lyme patients, and license suspension and revocation.

This pattern of patient and physician problems appears to be an anomaly when considered in light of activates at the federal level. Visiting the US Army Centers for Health Promotion and Preventive Medicine (CHPPM) at Aberdeen Proving Grounds, the LDA was surprised at its aggressive program, which includes impregnating army uniforms at the time of manufacture with permethrin for troops going into tick infested areas. CHPPM developed a pocket-sized lab to test ticks in the field so that soldiers may receive immediate treatment if bitten by ticks that test Lyme positive. Babesiosis and Ehrlichiosis are also being studied. Tick populations are mapped with resultant data stored in GPS satellites. This data will soon be beamed to soldiers in the field wearing special prototype helmets containing heads-up displays, which will show the soldiers where the heaviest tick concentrations and highest tick infectivity rates are, allowing armies to maneuver around them.

NASA and the National Institutes of Health, NIH, have a joint 3-dimensional culturing project for Lyme disease bacteria using microgravity chambers, which mimic conditions in space and in the human body. They are studying how bacteria communicate in a 3-dimensional situation. The NASA official in charge of the project spoke at the last LDA conference.

An issue with TBDs that has come to the forefront nationally is how they affect the blood supply. New Red Cross blood donor guidelines accept persons with Lyme disease if they were treated, the disease resolved and at least one year has passed. Those with chronic Lyme disease are not eligible to donate blood. Individuals who had babesiosis are also prohibited from giving blood. The American Society of Clinical Pathologists (ASCP) blood donor guidelines stateunder “serious illness,” defer indefinitely babesiosis and Lyme disease. In their April 1999 report to Congress entitled Activities Regarding Lyme Disease and Other Tick-borne Diseases, US Army CHPPM expressed its concern about the blood supply and tick-borne illness, mentioning Ehrlichiosis and possibly Rocky Mountain spotted fever as having been transferred through blood transfusions. Several studies in peer review discuss the actual transmission of babesiosis through the blood supply.

As early as 1993, in Washington, DC, US Senator Edward Kennedy held hearings focusing on the problems with the disease and the resultant political problems created for treating physicians. In 2002, the US Senate passed legislation (S 969) that would provide $50M over five years for research for a diagnostic test, and for prevention, and education. The LDA and TFL were heavily involved with this process with Congressman Christopher Smith on the House side and Senator Christopher Dodd on the Senate side. At a Greenwich Connecticut fundraiser a few weeks ago, LDA and Time for Lyme presented Connecticut Senator Christopher Dodd an award for his work with LD. The Senator graciously spoke some kind words about the work of the LDA and committed to Lyme disease efforts in DC this year. Since it is a new Congress this year, the bill will have to go through the Senate again and the House.

In September 2002, Congressman Smith, Chair of the House Veterans Committee, hosted a meeting for the LDA in Washington, DC with the military. I personally have worked with Congressman Smith for about 13 years on various issues, especially Lyme disease. LDA took Drs. Burrascano, Liegner, and Fallon who presented data supporting the persistence of Lyme disease to about a dozen military officials and Congressman Chris Smith. The reason for the meeting was the LDA has received reports from the military and their families about not being able to receive appropriate treatment for the disease. The officials in DC did admit they had similar treating problems inside the military as we were having outside. Subsequently, we have had communications with some of the officials, and I have provided a wealth of material on Lyme to them.

The Centers for Disease Control & Prevention, CDC, keeps statistics on the cases of Lyme disease nationwide. There is a problem with these statistics. They are meant to be for surveillance purposes only, comparing numbers, e.g., NJ to PA to DE etc. Cases that are reported from each state to the Centers for Disease Control & Prevention, CDC, must meet the CDC surveillance criteria which follow: one must have either an EM rash or positive serology plus major system involvement. Studies have shown that the EM rash appears less than 50% of the time, and that other types of rashes may appear, or there may be no rash at all. Lyme disease tests are inaccurateantibody response tests such as ELISA and Western Blot can be negative when the victim has Lyme disease for many reasons.

So now you have a reporting system that only accepts minimally 10% of actual cases, 90% are missed. In the year 2000, nationally reported case numbers rose 8% with 17,730 cases reported, which equals 177,300 actual new cases for the year 2000. Delaware reported over 212 cases in 2002, translating into 2,120+ cases for the year 2002 to date. (MD reported 802 thus 8,020; DC 28, thus 280; NJ 2,094 thus 20,940 cases; PA 3,327 thus 33,270)

Another problem with the LD reporting system occurs despite the warning the CDC places on its website which states “This surveillance case definition was developed for national reporting of Lyme disease; it is not appropriate for clinical diagnosis.” Many physicians still mistakenly diagnose based on the CDC case definition. Insurance companies often use the CDC surveillance criteria for reimbursement determination. They may also limit treatment reimbursement to four weeks and substitute orals for IV. Therefore, treating physicians have a dilemma: treating sick patients who do not meet the criteria. Privately, several doctors have revealed that their insurance carriers strongly suggested they either leave the plan or stop treating Lyme patients long term. A few continue to treat, some refer their patients to long-term treating physicians, while others, fearing reprisals or facing economic hardship, stop seeing Lyme patients.

STATE ISSUES
At issue in many states to patients and doctors is the volume of complaints by medical boards against these treating physicians who already constitute a very small number overall. To address the Lyme disease situation in New Jersey, in 1993, Congressman Christopher Smith, held a public Congressional Lyme forum in New Jersey. At LDAs request two years ago, Congressman Smith’s office met with the NJ State Board of Medical Examiners, followed by an LDA meeting with the Examiners to discuss harassment by the medical licensing board.

State hearings on Lyme disease are increasing. Attorney General Richard Blumenthal held Connecticut hearings where he concluded that Lyme is a scientific controversy and doctors should be permitted to treat accordingly. The Texas state senate held hearings on Lyme and directed the Texas Board of Medical Examiners to develop review guidelines for doctors who provide medical care related to tick-borne illnesses. New York Assembly Health Care Committee held two hearings on Lyme disease due to concerns about OPMC harassment of treating physicians. I was asked to testify at both.

A resolution, which the LDA helped draft, resulted from those hearings and passed the NY State Assembly last year requesting that insurance companies and the Office of Professional Medical Conduct cease and desist from targeting physicians who fall on one side or the other of this controversy. A bill reforming the Office of Professional Medical Conduct, OPMC, also passed the Assembly last year and has been reintroduced this year. A new bill (A07365) just introduced in the Assembly protects physicians from being charged by the medical board for treating Lyme disease long-term.

The LDA was invited to testify before the Rhode Island Lyme Disease Commission last year. Because of the hearing, Rhode Island successfully passed a law that protects physicians from harassment merely for treating Lyme disease patients. Additionally, the state was able to negotiate an agreement with Blue Cross that helps patients with the disease receive long-term treatment for Lyme disease. I am also excited to announce that the newly formed Lyme Disease Association, Rhode Island Chapter, LDARIC, was instrumental in the unanimous passage of a bill through the Rhode Island House of Representatives a month ago. The bill requires insurers in RI to pay for long-term treatment for Lyme disease. Next stop is the RI Senate.

The Connecticut treatment law enacted in 2000 appears to be causing problems for patients with Lyme disease. The original bill was crafted to enable patients to receive long-term treatment, unfortunately unacceptable language changes were inserted before passage. Obtaining treatment reimbursement from the insurance company after a mandatory second opinion from a specialist delineated in the bill has become difficult. States need to be wary when treatment issues are legislated, since changes can turn a patient friendly bill into an insurance friendly bill. AG Blumenthal is examining that legislation.

California, Massachusetts, Minnesota, Connecticut, New Jersey, and New York, have enacted or introduced legislation addressing issues ranging from Lyme Advisory Councils to treatment and tick control. LDANJ, our former name, was successful in passing a non-mandatory statewide Lyme disease curriculum for the schools jointly developed by the department of health and the department of education through the NJ Governor’s Lyme Disease Advisory Council while I was Chair. LDANJ was also successful in passing mandatory annual teacher in-service for educators in New Jersey who have students with Lyme disease. We have children around the country who are out of school for months and even for years. LDA provides programs in the schools to address this issue and is a professional service provider for the State of NJ. As such, LDA is able to conduct Lyme disease education programs for educators and award them professional development hours. LDA has also helped parents of children who have been unable to receive an appropriate education due to disabilities caused by Lyme disease and we developed the ABCs of Lyme disease specifically for parents and educators.

LDA Passaic County rep, Cynde Levans, is very familiar with the education problem as is her son, Harrison. They are here today to briefly tell you about the problems Harrison experienced in the schools despite the above-mentioned legislation.

LDA has launched an educational campaign with state officials and to date has met with
• Connecticut State Attorney General Richard Blumenthal and Commissioner of Health Joxel Garcia
• New Jersey Senior Assistant Health Commissioner Blumenstock and the NJ State Board of Medical Examiners
• Rhode Island State Health Director Pat Nolan and the Governor’s office. I spoke at the bill signing in RI last year at the invitation of then Governor Almond.
• New York State Department of Health, the Office of Professional Medical Conduct, and Governor Patakai’s office.
• Pennsylvania House of Representatives majority caucus and several forums including one this year in Sunbury sponsored by the Pennsylvania House of Representatives Majority Leader, Merle Phillips.
• LDA has helped organize and spoken at several congressional forums and forums hosted by state officials in RI, CT, MA.

Last year I traveled throughout California speaking to officials, doctors, advocates and patients and the newly formed California Lyme Advisory Council. I told them that the problems I heard in California mimicked those of the east coast 5-6 years ago: a blindness to the fact that Lyme and other TBD’s exist and are mentally and physically crippling thousands of people. I suggested that they could learn from what had happened in the east. What I did not say was that many in the east need to open their eyes and their minds to the devastation Lyme produces for patients and families alike. Two weeks ago, I was again in California where I spoke at a medical conference on Lyme disease and I spoke at a medical conference in Missouri and at public forums in Kansas. If you thought Lyme did not occur in Kansas, I will refer to a report I have in my hand which shows Lyme surveys being done by the Army on Ft. Riley, Kansas, which is a place dear to me since my first daughter was born there. The significance of the survey was it was performed in 1989 due to cases already on Ft Riley.

Lyme disease is here, there, everywhere, and we had better begin to take responsibility for the implications of that fact. We have been in contact with Australian doctors looking at the disease, South American researchers looking for help, and a neurologist studying the neurological manifestations of the disease in China. The United Kingdom Lyme group is having its second conference, which LDA is sponsoring, in Britain. Germany is having another conference. We have heard from Siberian researchers seriously studying the disease there. I just received a communication from researchers in Russia about Lyme disease tests they are developing. I have heard of people getting the disease from infected ticks in the desert. A guidebook for Death Valley warns people to beware of the ticks. This should send alarm bells to the thinking individual that Lyme disease is a vastly underrated threat to all who inhabit this ever-shrinking planet. By the time we decide whose backyard this disease is really in and freely allow doctors to practice medicine without interference, we will have maimed, crippled, and killed tens of thousands more, many of them our children. Thank you.

I am pleased to now introduce Daniel Cameron, MD. Dr. Cameron is an internist and an epidemiologist who treats Lyme disease patients and also has an ongoing clinical trial for Lyme disease in Mt. Kisco, New York. He is a member of the Board of Directors of International Lyme & Associated Diseases Society, ILADS, a professional medical society. I am honored to be sitting on the ILADS Board along side someone of Dr. Cameron’s caliber. Dr. Cameron is someone we in the Lyme community describe as an LLMD, Lyme literate physician. I thank Dr. Cameron for agreeing to be with us today to provide an overview of Lyme disease.

BREAK

I have the honor to now introduce Brian Fallon, MD. Dr Fallon is a psychiatrist who is Associate Professor, Clinical Psychiatry, Columbia University and the Director of the Lyme Disease Program at the New York State Psychiatric Institute, and soon to be director of the Chronic Lyme Disease Research Center at Columbia University. Doctor Fallon is known worldwide for his work on Lyme disease and has published a number of papers in peer review describing cognitive effects of Lyme on children, the underdiagnosis and undertreatment of the disease, and the neuropsychiatric aspects of the disease which he will discuss here today.

Q&A

Thank you all for coming.