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Dr. Cameron's testimony in Boston.
October 12, 2005
Good morning distinguished members of the Joint Massachusetts Legislative Committee on Public Health. I appreciate having the opportunity to speak to you on Lyme disease. I am speaking from the perspective of a practicing physician in New York. My comments today remind me of my days as a medical student at the University of Minnesota in 1977. I was shocked at the time to find so many physicians reluctant to take on the issues important to the elderly of Minnesota. Most physicians of the time felt they already knew what to do for the elderly. Patients were upset with the care for age related diseases including Alzheimer’s disease, osteoporosis, and depression. Patients were pushing to find a doctor comfortable with the care of the elderly. Organizations including the Gray Panthers and the AARP also pushed for better care. As a result, the elderly received better care. I completed medical school and a graduate degree in epidemiology from the University of Minnesota by 1982 hoping to help provide better care for the elderly. I trained at Beth Israel Medical Center and Mt. Sinai in New York. I directed one of the first Alzheimer’s centers in New York. My career changed in 1988 after treating my first 3 Lyme disease patients. Lyme disease had already been known for 13 years. I was surprised at the physical, mental, and emotional manifestations of Lyme disease. Yet, I had not been taught about Lyme disease despite my training at the University of Minnesota, Beth Israel Medical Center, and Mt. Sinai. One of the first things I learned about Lyme disease came when one of these three patients traveled to see Dr. Steere at the Tufts University School of Medicine, New England Medical Center. This patient had a history of Lyme disease for 4 years with a history of an erythema migrans rash and Bell’s palsy. Symptoms persisted despite oral and intravenous antibiotics. Dr. Steere advised that the patient try penicillin which proved effective. I have been treating Lyme disease patients now for 17 years. There was initial promise that physicians would take on the issues important to Lyme disease patients. Dr. Alan Steere had written the first paper on Lyme disease while a member of the Yale University School of Medicine. Dr. Steere described an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities including Lyme Connecticut. These children and adults had originally been told they suffered from juvenile rheumatoid arthritis. These Lyme disease patients were successfully treated with antibiotics. The CDC recognized Lyme disease as an epidemic by the 1980’s. The CDC set up a surveillance definition counting cases with an erythema migrans rash (commonly known as the Lyme disease bulls-eye rash), Bell’s Palsy, Arthritis, and Heart Block. Unfortunately, the CDC surveillance definition shortly became a problem. Lyme disease patients were being denied treatment unless they presented with a Bull’s eye rash, Bell’s palsy, arthritis, or heart block. One example of a commonly missed diagnosis of Lyme disease was neurologic Lyme disease described by Drs. Logigian and Steere in 1990. Lyme disease patients were described with fatigue, headaches, memory loss, mood changes, irritability, and sleep disturbances. But problems arose when physicians who were not trained in diagnosing neurologic Lyme disease encountered patients presenting with fatigue, headaches, memory loss, mood changes, irritability, and sleep disturbances. Physicians were telling patients with neurologic Lyme disease they had a number of other illnesses including psychiatric conditions. Another example of a commonly missed diagnosis was psychiatric Lyme disease, described by one of our speakers today in 1993. Dr. Brian Fallon reported in the American Journal of Psychiatry that “a broad range of psychiatric reactions were associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder.” But even long after Dr. Fallon’s report was published, many physicians would rather give the patient a psychiatric diagnosis than diagnose Lyme disease as the underlying cause. A more controversial diagnosis arose among Lyme disease patients when Drs. Dinerman and Steere described fibromyalgia in 1992. Lyme disease patients were being told they had fibromyalgia an average of 1.7 years after treatment for Lyme disease. Patients relapsing after a month of antibiotics were told they had fibromyalgia and all that was needed were antidepressants and exercise. Unfortunately, only one of the 15 patients with fibromyalgia in the study was completely asymptomatic after 2 ½ years of treatment. This fibromyalgia paper became a problem in our area when physicians increasingly were more willing to diagnose fibromyalgia than Lyme disease, even if the patient was failing on antidepressants and an exercise program. The patients were not even told that Lyme disease was a consideration. The treatment guideline controversy started in 2000 when Drs. Wormser, Steere and others concluded that “chronic Lyme disease does not exist as a distinct entity.” The guidelines were adopted by the Infectious Disease Society of America (IDSA). Despite 35 years of research and thousands of Lyme disease patients described, the IDSA concluded that “chronic Lyme disease does not exist as a distinct entity.” Needless to say, insurance companies and disability companies have been giving the appearance that they are comfortable with the IDSA position that “chronic Lyme disease does not exist as a distinct entity.” There’s no question that Lyme disease treatment can be expensive, especially in chronic cases. Insurance companies that end up paying for it will latch onto any excuse they can find to justify denying Lyme disease treatment, or shortening its duration. Unfortunately, the IDSA treatment guidelines have given them just this sort of excuse. The medical firestorm over Lyme disease and its treatment
doesn’t end there. The answer may lie in the severity of Lyme disease in patients volunteering for the study. The patients were ill an average of 4.7 years. Their quality of life was worse than diabetic and new heart attack patients and as bad as patients with congestive heart failure. Drs. Klempner, Steere and colleagues concluded there “was considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease” yet did not recommend future study. Drs. Klempner, Steere and colleagues could have emphasized the poor quality of life of chronic Lyme disease patients and the need for further study. Instead, the study is being used by health plans and disability companies to deny benefits. In another development, State Medical Boards began investigating physicians who treated Lyme disease patients. The State Medical Board in New York gave the appearance that physicians treating Lyme disease were being targeted. A bill was passed by the legislature to protect doctors who treat Lyme disease from unreasonable harassment, only to be vetoed by Governor Pataki. Instead, Governor Pataki granted some protections to physicians treating Lyme disease through a memorandum to the State Medical Board. The State Medical Board’s actions in New York had a chilling effect on physicians in New York and the rest of the country. Physicians in our area are reluctant to diagnose Lyme Disease unless they are well documented cases-- i.e. obvious erythema migrans rash, Bell’s palsy, 5 of 10 bands on an IgG Western blot test. Patients are instead being told they have another condition, such as fibromyalgia or multiple sclerosis, or labeled with a psychiatric diagnosis. Without a diagnosis, Lyme patients remain untreated. It's important to remember that only a minority of Lyme patients will test positive by an IgG Western blot test, and most present without a bulls-eye rash. But an accurate clinical diagnosis can still be made by a Lyme disease-experienced physician, provided the doctor is free to use his best medical judgment without fear of reprisals. And most of these clinically-diagnosed patients do get well when treated with antibiotics for sufficient lengths of time. I see some hope for physicians who seek to improve the care of Lyme disease patients. I have joined the board of the International Lyme and Associated Diseases Society (ILADS). ILADS is the only professional society in existence that “provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.” I have published the ILADS practice treatment guidelines. These guidelines summarize the clear and convincing published evidence for the existence of chronic Lyme disease. Dr. Brian Fallon, who is speaking today, recently completed a NIH sponsered clinical trial showing promising results when treating neurologic Lyme disease with 10 weeks of intravenous antibiotics. I will be reporting on the results of another clinical trial at this year’s ILADS professional meeting, a double-blind study showing promising results when retreating Lyme disease with 12 weeks of amoxicillin. I see three key reasons why the legislative branch of each state needs to address Lyme disease. First, Lyme disease patients need a voice in the same way the elderly needed a voice in the 1970’s. Second, the legislature has responsibility for oversight of health plan and disability companies. The legislature should monitor any overzealous denial of coverage by health plans or disability companies. Third, the legislature and/or executive bodies have responsibilities for medical boards. The legislature needs to prevent the state medical boards from targeting physicians who treat Lyme disease. In conclusion, in the 1970’s patients were not
happy with the direction physicians were going in treating the elderly.
It is clear patients remain unhappy to this date with the direction
physicians are going in treating Lyme disease. I continue to see patients
who have seen infectious disease physicians only to be told they do
not have Lyme disease based on a negative Western blot test, rheumatologists
who insist they have fibromyalgia even if the antidepressants and exercise
were failing, and neurologists who will not treat unless they can prove
Lyme disease with a spinal tap, which is an invasive and unreliable
method of diagnosis. We need your help to give a voice to your constituents
with Lyme disease to monitor medical plans, disability carriers, and
State Medical Boards. |