LDA President Pat Smith
Mt. Equinox Bike Climb Manchester VT August 7, 2004
Pat Smith, President, Lyme Disease Association, Inc.
I want to thank the Holzmans and the Rotary for organizing this wonderful event here today. For many of you, today is a way to contribute to a worthy cause, enjoy yourselves, and also to maintain your health.
Different types of ticks are carrying the disease, and with one bite you may contract not only Lyme disease but also diseases with ominous sounding names like babesiosis, Ehrlichiosis, bartonella, tick paralysis, and tularemia. Each has its own symptoms, each has its own treatment, and unfortunately, each may complicate an already difficult diagnosis and treatment regimen.
Ranging in size from a poppyseed to a large sesame seed, deer ticks, the main vector for Lyme disease, can wreak untold havoc on the infected individual and his/her family. Dozens of doctors, years of treatment, piles of unpaid medical bills are only part of the scenario. The other part can be equally devastating, the lack of emphasis placed on Lyme disease.
One of my friends was a biker like you, a brilliant environmental scientist. He traveled across the northeast and participated in a vast amount of biking activities. Today, at 43, he is barely able to drag himself to work, he is gradually losing the use of his arms and legs, and he has had white matter lesions on the brain, no, not from MS, but from Lyme disease. When I spoke to him about this event, he was very sad, despite the monies that will be generated here for the creation of the center for chronic Lyme disease at Columbia University. Now, he has no life, only an existence.
The answer to this disease lies in research. The technology is available to pull this bug apart, LDA is funding a project right now that is mapping the genome of different Lyme disease strains and funding others with Dr Fallon looking at the brain affected by Lyme disease with state of the art imaging to unlock the secrets of this complex organism. Research requires a monetary commitment. Your being here today helps, and I should add that over 98% of Lyme Disease Association funds go directly to programs, we are all volunteer.
I want to welcome you here this evening on behalf of the Lyme Disease Association and the Literati with Lyme who have come together publicly to discuss how the disease has impacted them professionally and personally. They have recognized that we can no longer allow this disease and its sufferers to be ridiculed, shunned, embarrassed, and belittled. The way to change those behaviors is through science and through forums such as this where known professionals who stand to lose their careers from the ravages of this disease boldly and publicly speak out about their experiences.
In fact, Lyme is the most prevalent vector-borne disease in this country today and the most prevalent vector-borne bacterial disease in the world. Its range has spread. Its numbers march upward, and its casualties mount. Government spending is not commensurate with the magnitude of the disease. Its vast suffering is unchecked worldwide. Many of the victims are our children.
The Lyme Disease Association and all its affiliates and chapters nationwide are working together to stop the spread of Lyme and all other tick-borne diseases, many of which can be acquired by the bite of the same tick. Anaplasmosis, babesiosis, bartonellosis, Ehrlichiosis, Rocky Mountain spotted fever, STARI, tularemia, tick paralysis─ the legion of tick-borne microbes grows larger every day. To that end, LDA and its Connecticut affiliate Time for Lyme are partnering with Columbia University to open an endowed research center there for chronic Lyme disease. LDA and its affiliates together have raised about $5 million for research and education on tick-borne diseases. Together, we have become a cohesive force which will finally batter down the resistance we have faced for so many years, a resistance not primarily based on science but on attitudes, vested interests, and perhaps other agendas not yet known.
Patients are providing the resources for education, the resources for science, and now they are providing the voices which will bring down that wall of resistance. Writers have always played a pivotal role in the history of world events─they have printed and shouted their messages at great peril to themselves and enabled many great truths to come to the forefront all over the world. The writers tonight are following in the footsteps of those who have come before, they are revealing the truth about Lyme disease so that hundreds of thousands of people world-wide will soon be able to take back control of their lives not only from the disease organism but from the entrenched entities who have fought to define this disease into something they can manipulate for their own purposes.
Philosopher Arthur Schopenauer said
All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.
We are ready for that acceptance.
These letters represent a small fraction of the outpouring of support for Dr Jones that I hear about in my national travels. He is a legend from coast to coast. We are lucky to have him, our children even luckier.
TRUCKSVILLE, PENNSYLVANIA FORUM FEBRUARY 7, 2004
BY: Pat Smith, President, Lyme Disease Association
VP for Political Affairs, ILADS
Lyme Disease Association, LDA, is an all volunteer national non-profit dedicated to prevention education, research and assisting patients. LDA has five affiliates and 4 chapters nationwide, including LDASEPA and PA Chapter in Pennsylvania. Along with Time For Lyme (TFL), our Connecticut affiliate, we are in partnership with Columbia University to open an endowed chronic Lyme disease research center to be housed at Columbia. We have raised about 1.2M toward the $3 million necessary to open the center.
Only 1/10th of actual cases of Lyme disease that meet the CDC guidelines are reported. In 2002, about 24,000 new cases of Lyme disease were reported nationally to the CDC, which equals about 240,000 actual new cases meeting the CDC criteria, a 40% increase.
There is currently a bill in the US Senate Health Committee which will establish a tick-borne advisory committee and provide 50M for Lyme disease issues.
Childhood is a time in which children should be giving reign to their natural curiosity and exploring the world, learning how to develop relationships with their peers, and enjoying life before they are burdened with adult responsibilities. Unfortunately, children with Lyme are often not able to do that and indeed, are even penalized for being sick Lack of understanding of the disease is the main culprit behind this behavior.
Because of efforts by the LDANJ, now LDA, a NJ law was passed which requires school districts to annually educate any teaching staff member who works with children who have Lyme disease, and it encourages, but does not mandate, the implementation by school districts of a NJ Department of Education-adopted Lyme disease curriculum.
LDA is working with advocates in other states to try and get a similar measure passed. LDA produced a brochure entitled The ABCs of Lyme Disease written specifically for parents and educators and our Time for Lyme affiliate has a video tape for educators.
When children develop chronic Lyme, they are not only fighting disease, but they and their parents must also fight to get a proper education. Numerous school districts are unaware of the myriad of problems relating to LD, particularly those interfering with the learning process. Therefore, instead of receiving appropriate educational support programs and services, children are often ignored, punished, or ostracized. Lyme is often not considered a serious disease.
Students with Lyme may be classified as other health impaired under an IEP or placed under a 504 plan, although educational accommodations can sometimes be made without either one.
Children may be identified with ADD, attention deficit disorder, medicated for those symptoms, and no cause is ever sought. According to Dr Brian Fallon, Columbia University Associate Professor of Psychiatry and Director of the Lyme Disease Program of the NY Psychiatric Institute, a child who manifests primarily with inattention and fatigue as opposed to hyperactivity should probably be evaluated for Lyme disease. Districts need to carefully evaluate any child who has a history of Lyme and is experiencing neurologic, psychiatric, and attention deficit problems to ensure that the problems are not organically produced by Lyme disease, since the bacteria causing Lyme disease can enter the central nervous system less than days after a tick bite.
Suicide attempts can and do occur in children with Lyme. I heard of one case where a teen left a note indicating that no one including her school understood her problems with Lyme. Another involved a teen who was being treated for Lyme until a psychiatrist told him it was all in his head. He stopped the meds, and due to intense pain from the disease, he killed himself.
Fluctuations in symptoms present another problem for schools. Lyme symptoms can vary from day to day and even hour to hour. Serious sleep disturbances may cause them to oversleep in the morning, necessitating an afternoon schedule. Executive functioning may be impaired and the child may have difficulty organizing his/her day or life.
Below are a few of many cases of students with Lyme disease in which I have been directly involved.
Student X had been on home instruction all during high school. The district forced him to take Spanish I three times. He completed the course the first two times but was too sick to take the final exam each time. He balked at retaking the course the third time. He was never able to fully complete his other courses for the same reason. He was never told his course work could carry over until he was well enough to finish each course. At the end of senior year, he had only 11 credits toward graduation. His IEP was never fully implemented. He had however, passed a state mandated graduation test. The district was refusing to allow him to graduate. The parents called me in a few months before graduation.
I pointed out to the district and its attorney the improper handling of his educational program. Since he was classified, he should have been permitted to continue each course until he finished it, not retake it because he was sick and missed an exam or test. He was not only permitted to graduate but also the district agreed to pay for 2 years at a community college in lieu of the parents taking costly legal action against the district, a case which the district stood a good chance of losing because of their improper handling of his education. He has subsequently graduated from community college, has a good job, and celebrated the birth of his first child last month.
I pointed out to the district they had no legal basis to make those decisions. Z took honors courses at home, including honors biology on a picnic table in her back yard, took three AP courses, and attending school a few hours a day her last two years of high school, she doubled her math courses senior year. She graduated on time with an A average, attended Johns Hopkins University, withdrew for a semester because of seizures, completed junior year with an IV in her arm, and graduated on time, Phi Beta Kappa, and with honors. She now heads production for a major peer review medical journal in NY.
Side note, after her HS graduation, the district agreed to review and change the honor society regulations to permit a classified student on home instruction to be inducted into the honor society with a waiver of that one provision about after school activities. The district did say however, that just because the regulation was changed, we should not think the selection committee would ever vote anyone like that in.
These students are Lyme success stories. Sadly, for each one of them, there are dozens more who have neither a parent nor an advocate to fight for them. While they are struggling for their very lives, society should be throwing them life preservers instead of holding their heads under water and forcing them to struggle harder.
PO Box 1438 Jackson. NJ 08527 732-938-4834 888-366-6611
INTRODUCTION OF KIM HARRISON/NEWTOWN Kim Harrison is the co-president of the Newtown Lyme Disease Task Force. She has a M.S. in Elementary Education and is currently a stay at home mom with her 2 children, one a chronic Lyme sufferer. The Task Force was formed in April 2000 in response to the growing number of people in Newtown suffering from tick-borne diseases. The mission of the task force is to promote education and understanding of tick-borne diseases in CT.
INTRODUCTION ADAM LESSLER
Adam Lessler, Columbia University, assistant to Dr Brian Fallon. The NIH awarded Columbia $4.7 for a long term treatment study for Lyme disease. Patient community excited about the study.
Adam is here to tell you about the study and how you can participate.
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.
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.
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.
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.
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.
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.
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 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.
Thank you all for coming.