NatCapLyme focuses our efforts on helping people with tick-borne diseases through awareness, education, support, advocacy, and research. After careful deliberation, we issue formal position or policy statements on issues that are of critical importance to our community and our association’s mission. We invite you to read through our past position statements:
Mr. Chairman and members of the Committee. This statement is submitted on behalf of the National Capital Lyme & Tick-Borne Disease Association, also known as NatCapLyme. NatCapLyme, a 501(c)(3) was formed in 2001, serves approximately 1800 members, has Maryland chapters in Montgomery and Howard counties and has members throughout the state. We are an independent association with no affiliation to the National Lyme Disease Association. For over a decade we have educated the public at large about Lyme & Tick-borne disease by partnering with our local health departments in Maryland, DC & Virginia and by working with our elected representatives to develop policies and plans that support individual and community Lyme awareness and prevention efforts.
Lyme and its associated diseases are a large and growing menace in the state of Maryland. They are having a profoundly deleterious effect on the lives of good and innocent people who are unable to obtain appropriate relief from the medical community. We have read the preamble declarations in HB 798. Our members are living testimony to the proposition that each of them is a statement of fact. It is our purpose here to describe the extent of the problem and to encourage the Maryland Legislature to address these issues.
Thanks to a mother’s persistence, Lyme disease came to public consciousness in Old Lyme, Connecticut in the mid-seventies due to the illnesses of her children being dismissed as simple childhood arthritis. Amazingly, a generation later, it is still a very misunderstood disease. Although there is much educational material on the disease and its causes for both physicians and patients, most people still believe that Lyme disease is characterized exclusively by a bulls-eye rash, joint pain and flu-like symptoms. However, not all patients exhibit these symptoms and many go undiagnosed. Disagreement exists in the medical community when the illness moves beyond its initial stage and into the secondary and tertiary stages of the disease. If not properly diagnosed and treated in the initial stage, Lyme can become a highly debilitating illness.
Lyme disease is regarded as the fastest-spreading vector-borne infection in the United States. The CDC states that only 10 percent of cases that meet its strict surveillance criteria are reported. In 2007, 27,444 cases of Lyme disease were reported yielding a national average of 9.1 cases per 100,000 persons and a total of over 270,000 cases. Due to the limitations of the CDC case definition, some believe the real annual incidence of Lyme disease may be as much as 40 times the reported number of cases. The Johns Hopkins Medical Center includes Maryland in one of the most endemic areas for Lyme disease in the nation. According to the U.S. Centers for Disease Control, Maryland experienced a 46% increase in CDC-reportable Lyme cases from 2006 to 2007 and another 31% increase from 2007 to 2008; ranking Maryland the 8th highest state in the nation in confirmed cases, an overall increase of from 1248 cases in 2007 to 2576 cases in 2008 and 2218 in 2009. From 1999 to 2007, Maryland has seen a 287% increase in reported cases from 899 to 2,576. The nearby Eastern Shore has long been considered at higher risk for Lyme, with an established infected tick population. A 1990 Army study detected the causative agent of Lyme disease, Borrelia burgdorferi (Bb), in 37 percent of Ixodes ticks collected in a county bordering the Chesapeake Bay.
Late-stage Lyme disease exists and is growing exponentially. When Lyme reaches a chronic condition it can cause serious debilitation. In a 2008 study, researchers at Columbia University in New York City concluded that the fatigue level in chronic Lyme disease patients is equal to that of multiple sclerosis. Other studies have described the fatigue as “profound, notable, unusual, debilitating, and extreme, not as a vague symptom of tiredness.” Two earlier articles in the Annals of Internal Medicine attributed “long-term impairment of functional status” to exposure to Lyme disease, including “more musculoskeletal impairment and a higher prevalence of verbal memory impairment when compared with those without a history of Lyme disease.” Two more researchers concluded that “some patients with LB [Borrelia burgdorferi] have fatigue, musculoskeletal pain, and neurocognitive difficulties that may last for years despite antibiotic treatment.
Current practice, in response to the recommendations of the 2006 Infectious Disease Society of America (IDSA) Guidelines, is for physicians to rule out Lyme disease based on the authors’ narrow views that the disease is easily cured. Yet there is ample peer-reviewed literature demonstrating the persistence of Bb following antibiotic treatment and documented presence of active borreliosis despite seronegativity. This practice and application of the Guidelines leads to many patients developing serious and deeply entrenched infection by Bb and other pathogens due to misdiagnosis or under-treatment. Borrelia burgdorferi is considered by many to be one of the most complex bacteria ever studied and in vitro studies of Borrelia burgdorferi have documented incredible survival techniques.
Moreover, the accruing empirical and anecdotal evidence of late-stage Lyme disease is staggering. There is a large and quickly growing body of anecdotal evidence worldwide, that complex chronic illness can have underlying infectious bases. Yet, because of the IDSA guidelines, many patients believe that they could not have Lyme.
We must understand that the medical community is fiercely divided over the issues of ease of detection, diagnosis and treatment of later stage Lyme disease. This disagreement has led to two standards of care fostered by two groups of doctors. The Infectious Disease Society of America (IDSA) has one standard of care which limits treatment to that initial four weeks of antibiotics. The International Lyme and Associated Diseases Society (ILADS) recognizes that the Borrelia burgdorferi bacteria that causes Lyme disease can persist well beyond the initial treatment phase and calls for more open-ended, long-term antibiotic treatment, if supported by clinical evaluation. Both viewpoints are reflected in peer-reviewed, evidence-based guidelines. Some physicians observe the persistent symptoms as indicative of on-going infection and believe that there is insufficient evidence at this point to adopt standardized treatment protocols. Many people have greatly benefited from the ILADS standard of care. Both guidelines are registered with the National Guidelines Clearinghouse, an initiative of the U.S. Department of Health and Human Services. The IDSA has itself stated that its guidelines are merely recommendations, not intended to supersede clinical judgment.
Our experience in managing a Lyme disease support group of over 1800 members is that if not diagnosed and treated soon after onset of the infection, Lyme and many of its confections often become a far more debilitating, more entrenched infection that can impact a patient both physically and neurologically. There are many studies that support the position that the Lyme bacteria, Borrelia burgdorferi, can persist despite weeks or even months of antibiotics. We are quickly reaching the point where nearly everyone you know has either experienced Lyme disease in their own family or in the family of a good friend. In our visits with members of the Maryland House of Delegates we have heard many such stories, even among the members of this Chamber. They, and many others, have all too familiar stories to tell about disabled victims who have had their lives stolen by this disease. Some have been able to return to useful and fulfilling lives with long-term antibiotic therapy.
There are many Marylanders who could testify to the horrors of this terrible disease. It can cause serious physical and mental disability as well as economic hardship.
All of this leads clearly to the conclusion that the Lyme disease status quo in Maryland is unacceptable. The old paradigms do not work. Lyme and associated tick-borne diseases are a growing menace in Maryland that requires serious study leading to conclusions supporting concerted action.
HB798 is a modest but useful step in that direction. HB798 simply directs the state to study the prevalence of Lyme disease and associated tick–borne illnesses in Maryland, make recommendations on preventing it and on educating the population about it. These are laudable goals! A bill establishing a task force that would enhance collaborative efforts between a wide range of diverse groups including Lyme disease advocacy groups, medical and public health professionals, state agencies and legislators has great appeal.
However, we must add a note of caution!
We have seen good bills go sour in the past when amended after the public has had its chance to provide comment. We cannot endorse any bill until it’s final, amended language is available. We seek answers and further research; prevention, awareness and education. If such is the final charge to the task force, that would be a good thing. But a task force formed merely to conclude that no significant problem exists would do great harm. Moreover, without significant participation from physicians from the International Lyme and Associated Diseases Society, we cannot endorse any panel that examines diagnosis and treatment.
Thank you.
