Lyme Project - Lyme Disease Practice and Research Presentations

Lyme Disease Research

Dr. Cameron's Presentations- Page 4

Dr. Cameron’s testimony before a Public Hearing on
the Proposed Task Force on Lyme disease and
related maladies. (House Bill 798)

Testimony September 10, 2007

Good morning, distinguished members of the House of Representatives of the Commonwealth of Pennsylvania. I am sorry I was unable to attend due to another obligation. I had been asked to testify in Canada on the same day. I hope you will accept my written testimony on this important bill.

I am speaking to you from the perspective of a practicing physician with training in epidemiology. After completing medical school at the University of Minnesota, and residencies at Beth Israel Hospital and Mt. Sinai in New York City, I opened my office in the suburbs north of Manhattan. Like most people who live and work in the “woodsy” communities of New York or its neighbor Pennsylvania, the natural beauty of the area is what drew me to this place. Little did I know at the time that, for my patients and those of other doctors who serve our picturesque communities, living “close to nature” came with an unexpected price. I soon discovered that my office was located near the center of a new and dangerous epidemic, one that continues to grow and have a profound impact on all Americans-- especially residents of the Northeast. I have been treating Lyme disease patients for more than twenty years.

My comments today are in support of the Lyme and Related Tick-Borne Disease Prevention and Treatment Act (HB 798). I will summarize emerging problems in the diagnosis and treatment of Lyme disease that support the need for legislation.

First, the number of cases of Lyme disease continues to rise despite almost three decades of effort by the Centers for Disease Control and Prevention (CDC) to educate the public about how this disease is transmitted. Some of the CDC’s recommendations for Lyme prevention have included doing “tick checks”, tucking pants into socks, and using the insecticide DEET, but this hasn’t been enough to stem the tide. Lyme is now the most common illness transmitted by bugs or animals in the United States. In 2006, more than three thousand Pennsylvanians were diagnosed with Lyme disease. Given the fact that this illness can often go unrecognized or unreported, the actual number of Lyme cases in this Commonwealth is probably many times that number, and continues to rise. As an epidemiologist, I don’t use the word “epidemic” lightly-- but make no mistake: the incidence of Lyme disease has reached epidemic proportions in much of the Northeastern United States, and Pennsylvania is no exception.

Second, the number of cases of neurologic, psychiatric, and chronic Lyme disease remains uncertain. The CDC surveillance definition does not include patients with neurologic or psychiatric manifestations of Lyme disease, or those who have the chronic form of the illness. The number of patients with chronic Lyme disease has been estimated to be as high as 34% to 62% in two long-term outcome studies in Westchester, New York and Massachusetts respectively.

Third, the symptoms of neurologic, psychiatric, and chronic Lyme disease can be disabling to citizens of the Commonwealth, resulting in lost productivity at work or chronic unemployment, reliance on public aid, and a huge human and economic cost to the citizens of Pennsylvania. Symptoms of neurologic Lyme disease described by Dr. Alan Steere of Yale include fatigue, poor concentration and memory loss, headaches, mood changes, and sleep disturbances. Manifestations of psychiatric Lyme disease include major depression, paranoia, dementia, panic attacks, bipolar disorder, and obsessive-compulsive disorder. Long-term sequelae of at least 6 years have been reported for chronic Lyme disease, and may include arthralgias, distal paresthesias, fatigue, concentration difficulties, neuropathy, and poor global health status scores. The poor quality of life for chronic Lyme disease patients was best demonstrated in two NIH sponsored clinical trials by Klempner and colleagues. The quality of life for chronic Lyme disease subjects was rated lower than for people with type II diabetes or those who had recently suffered a heart attack-- and was as poor as for patients with congestive heart failure. When Lyme disease goes undiagnosed or untreated, the taxpayers of Pennsylvania end up paying for it.

Fourth, two NIH-sponsored trials have been cited as “evidence” that treating patients who have chronic Lyme is an exercise in futility; but these same studies have subsequently been shown to have serious design flaws, which raise questions about whether their conclusions are valid. The chronic Lyme disease patients in those studies had already had the illness an average of 4.7 years at the time of their enrollment— which made their cases among the toughest to cure. The Klempner report's failure to take average duration of study participants' illness into account when interpreting the results gives readers the potentially misleading impression that the study can be generalized to the overall population of patients that present with persistent symptoms and a history of Lyme disease (1). Many doctors who treat chronic Lyme disease patients have a much higher success rate than Dr. Klempner had with his study subjects. New and better-designed Lyme studies are needed, to help physicians find the best ways of treating patients who have chronic symptoms of the disease.

Fifth, residents of the Commonwealth who have Lyme disease are increasingly frustrated with difficulties in obtaining coverage for proper diagnosis and treatment of their illness. Pennsylvanians who find themselves ill with Lyme disease cannot wait for the International Lyme and Associated Diseases Society (ILADS) and the Infectious Diseases Society of America (IDSA) to use the scientific process to reconcile their differences about how, when, and if Lyme should be treated. HB 798 would allow patients needed coverage for treatment of Lyme disease and related tick-borne diseases, as prescribed by their attending physician.

Finally, HB 798 protects doctors who treat Lyme disease from undue harassment or interference by insurance companies and other organizations that file malicious charges of professional misconduct against them. Doctors and insurance companies may have legitimate differences on how long Lyme disease should be treated and who should pay for these patients’ care; but no physician should have to fear losing his medical license simply because he provides prudent and appropriate long-term medical treatment to patients who have chronic disease, or takes on tough cases that have been turned away by other doctors. Lyme patients deserve a chance to get well, and their doctors shouldn’t have to risk losing their livelihoods in order to help them. The State Medical Board’s actions in New York have 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-- even though the disease commonly presents without a classic bulls-eye rash or positive Lyme test results. 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.

Creating a Task Force on Lyme Disease and related tick-borne disorders would empower the Commonwealth of Pennsylvania to join forces with physicians, members of ILADS, Lyme patients, and others with first-hand knowledge of this debilitating disease, in a unified effort to halt this growing epidemic.

Lyme disease presents a very real and growing threat to the citizens of the Commonwealth, and the problem must be addressed without further delay. As Pennsylvania’s most famous citizen, Doctor Benjamin Franklin—a man who put together many a “task force” in his day, and who also obtained the charter to create America’s first hospital-- once said, “An ounce of prevention is worth a pound of cure.” I urge the members of the House to vote in favor of HB 798, the Lyme and Related Tick-Borne Disease Prevention and Treatment Act.

Sincerely,