Trucksville, PA – Lyme Conference
Trucksville, PA – Lyme Conference
TRUCKSVILLE, PENNSYLVANIA FORUM FEBRUARY 7, 2004
BY: Pat Smith, President, Lyme Disease Association
VP for Political Affairs, ILADS
Harold & the Other Pat Smith for organizing this
Thanks to the church & others who have helped
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.
LDA FUNDED PROJECTS
• Lyme disease testing including PCR & antigen complex
• Neurocognitive deficits in children
• Lyme & other TBDs in the gastrointestinal system after long term treatment
• Determining if Lyme bacteria re present in semen and/or in cervical tissue
• Genomic mapping of several strains of the Lyme bacteria
• SPECT scans studies of the brains of Lyme patients
• Determining where the bacteria hide in the CNS
• Various treatment studies
• Jointly hosted with Columbia Lyme conference in Philadelphia
CDC CRITERIA & POLITICAL ACTIVITY FOR LYME DISEASE
Lyme is the most prevalent vector-borne disease in the United States and is the most prevalent vector-borne bacterial disease in the world. The Centers for Disease Control & Prevention, CDC, keeps statistics on the cases of Lyme disease nationwide. The criteria used for reporting cases are meant for surveillance purposes only, comparing numbers, e.g., NY-CT-PA-NJ, top four states in cases. The criteria are not to be used for diagnosis.
The criteria for reporting are very narrow: one must have either an EM rash or positive serology plus major system involvement. The EM rash appears less than 50% of the time, although other types of rashes may appear, or there may be no rash at all. Lyme disease tests are inaccurate–you can test negative and still have Lyme disease. This is why the criteria used by the CDC are meant for surveillance and not diagnosis. Doctors need to diagnose clinically based on symptoms, history, and exclusion of other diagnoses. Unfortunately, many continue to diagnose based upon these criteria alone, and this may be why people often travel to many doctors before being diagnosed. A study of 20 Lyme patients cited by Dr Brian Fallon of Columbia University showed a patient saw an average of four doctors for a diagnosis and went 47 weeks from symptoms until diagnosis. Many of us know cases where ten, twenty and more doctors were consulted before a correct Lyme diagnosis was made.
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.
The LDA was successful in November in having a meeting in Washington, DC, with US Secretary of Health & Human Services Tommy Thompson’s office. LDA took a team from across the country and met with most of the major health officials in the US by video teleconferencing. We presented the fact that docs are improperly using the criteria to diagnose and treat as are insurance companies for reimbursement and medical boards are charging physicians for treating Lyme patients who do not meet the criteria. We also presented data about lack of funding despite a 40% increase in case numbers. HHS has promised to provide us with a response to our requests, which include a review of surveillance criteria, an advisory panel to study the disease, and an investigation into the lack of funding.
Political activity concerning Lyme disease is happening in many states across the country including NJ< RI< NY< MA<CA where bills ranging from mandatory insurance coverage to doctor protection to school issues are being introduced and laws passed addressing Lyme issues.
Thanks in part to efforts by our PA Chapt., House bill 1977 was introduced in PA House in Sept 2003 and it will protect docs by preventing PA medical boards from charging docs who treat & addresses some due process issues.
• will protect docs Defines long term treatment & does not permit boards to charge for it
• When complaint filed by insurance companies, copy disclosed wi ten days after licensee requests it
• Identity of experts and substance of their opinion shall be known
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.
LYME DISEASE & CHILDREN
Children are at the greatest risk of acquiring Lyme disease, and unfortunately, 10-15% of Lyme patients go on to develop chronic disease. Early diagnosis and treatment is crucial to preventing chronic disease, and to that end, LDA has teamed up with internationally acclaimed New York Times best-selling author, Amy Tan, who is supporting our newest endeavor, LymeAid 4 Kids. This fund will provide up to $1,000/child for families with no health insurance to help the children get diagnosed & treated.
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.
In 1992, at the invitation of Congressman Christopher Smith, I traveled to DC to present the impact of Lyme disease on children. I presented to the CDC and NIH data I had collected from 9 New Jersey school districts. As a result of my study, the CDC performed its own study choosing 5 of the 9 districts I had presented. According to the CDC study, of 64 students,
• the median (equal # of values above & below) duration of Lyme disease at the time of interview was 363 days
• the mean (average) number of school days missed because the child was too ill to attend was 103 days (with a range of 2 to 548 days).
• The median duration (equal above & below) of home instruction was 98 days, with a range of 5 to 792 days.
• the cost estimate available for medical treatment for 54 of the CDC study children was $5.2 million,
• more than one-third of families of the affected children had 3 or more members who had at some time been diagnosed with Lyme,
• 40% of the mothers were LD diagnosed.
• 78% of the parents stated that their children experienced a fall in grade point average during the time of illness,
• 79% experienced a decrease in the number of friends.
• A quote from the CDC study sums up the magnitude of the problem: “Perhaps the greatest costs incurred by the study children were the social costs of the illness and its treatment. Schooling and extra-curricular learning activities were seriously interrupted for most children; often, children spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports, and social activities. School performance of nearly all children fell, sometimes drastically, and in several instances was said to interfere with selection by colleges and universities.”
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.
Often children exhibit problems associated with Lyme disease that go unrecognized as such by districts, especially behavioral and mood changes. At times, children may be improperly classified, labeled NI (neurologically impaired) or ED (emotionally disturbed) when perhaps a classification including ‘other health impaired” might be more appropriate to address the medical problems triggering the neurologic and/or psychiatric problems that stem from Lyme.
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.
Recurrent short-term memory, concentration and recall problems, mental confusion, and exhibition of dyslexic type symptoms are not uncommon and interfere with the learning process. One Fallon study supported by LDA funding entitled “The Underdiagnosis of Neuropsychiatric Lyme Disease in Children & Adults” documents an improvement of 22 points in IQ in a 16 year old after IV treatment for Lyme disease.
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.
Student Y scored almost perfect on his SAT’s. His IQ exceeded 160. He was on home instruction throughout high school. The district refused to allow him to take Advanced Placement courses. The department heads argued that students on home instruction did not have a right to take these courses, the content would somehow be diluted. They felt the student was getting a break being on home instruction. Once, when Y was bedridden, the district requested that he report to school each day that he felt sick so that the school nurse could determine if he were capable of coming to school that day.
I told Y’s district it was unthinkable that an individual with his intellectual ability would not be permitted to take AP courses. Besides the fact the denial was not legal, it would be an extreme embarrassment to the district since Y was now a National Merit Scholar! He not only took his AP courses at home, but when I stopped by one day, I found him teaching one of his teachers. He graduated Phi Beta Kappa from Drew and is enrolled at Dartmouth graduate school where he taught as well as studied.
Student Z was an honor student out of school four years–three of them spent in intense seizure activity. Home instruction was often cancelled with the teacher at the door, because Z was in a seizure. She could not read more than a paragraph for 3 years. She had no contact with peers for 4 years. The district refused to allow her to take honors courses because she was on home instruction and refused AP courses, because they could not fathom why a sick person would want to take them. A teacher once called her at home and insinuated she might be cheating because her grades were so good on home instruction. The school refused to allow her to take two math classes in one year to try and makeup a missed course, an option available to all in-school students. She was refused admittance to the national honor society although ranked 5th in her class, because she had no after school activities.
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.
Our children are sick. They can’t get diagnosed. They can’t get treated. They can’t get appropriate education. They have asked for little and society has given them nothing in return. With help from all of you, we hope to change that.