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Testimony to the Rhode Island Lyme Disease Commission, April 8, 2002

By: Pat Smith, President, Lyme Disease Association, Inc.

Thank you. I am former chair of the NJ Governor's Lyme Disease Advisory Council, former president of the Wall Township Board of Education and am a director for International Lyme and Associated Diseases Society (ILADS), a professional, medical society. The LDA is an all-volunteer national organization providing Lyme disease education and funding for research projects coast to coast, including a past grant to URI for tick control and an $80,000 current grant to UMDNJ for a Lyme disease comparative genomic study. The LDA has acquired five affiliates and was honored by Columbia along with its Greenwich affiliate two weeks ago at a luncheon announcing Columbia's partnership with us in the opening of an endowed chronic Lyme disease research center to be housed at Columbia University. Academy award-nominated actress Mary McDonnell, a supporter of the Lyme Disease Association, attended the Columbia luncheon to support our endeavor.

Lyme is the fastest-growing vector-borne disease in the U.S., is found in many countries throughout the world, yet is rarely given the weight it deserves. The situation facing patients in Rhode Island is a microcosm of the national scene. Patients frequently cannot obtain diagnosis, treatment, insurance reimbursement, disability, education or even understanding from their families and peers because treating physicians 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), the LDA was surprised at its aggressive program, which includes impregnating 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 that will show the soldiers where the heaviest tick concentrations and highest tick infectivity rates are, allowing armies to maneuver around them.

NASA and the 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. Results of the 3-D Borrelia culturing should soon be available.

As early as 1993, US Senator Edward Kennedy held hearings in DC focusing on the problems with the disease and the resultant political problems created for treating physicians. More recently at the federal level, congressional members commissioned a General Accounting Office (GAO) investigation of government agency funding of Lyme disease studies. Legislation currently before congress includes HR 1254, which the LDA helped draft, that provides $125 million for LD research, physician education and examination of the CDC surveillance criteria.

Reported cases must meet the CDC (Centers for Disease Control & Prevention) surveillance criteria: a physician diagnosed EM (bullseye) rash, or positive blood work and other system involvement. The actual number of Lyme cases is estimated to be 10 times higher than reported cases. Nationally reported case numbers rose 8% in 2000 to 17,730 cases, which equals 177,300 actual new cases for the year 2000. New York and Connecticut reported the highest case numbers, although CDC data from 1990-1999 lists Rhode Island with an annual Lyme disease incidence of 39 per 100,000, behind only Connecticut with 63. Maine recently reported an upsurge in both tick populations and the disease itself, with 100 new cases last year and numerous others receiving preventative treatment.

Despite CDC warnings not to use their surveillance criteria for diagnosis, many physicians do, and many insurance companies deny treatment to anyone not meeting those criteria. Excerpts from two Lyme protocols used by insurance companies seem to base coverage on the surveillance criteria, requiring symptoms supported by positive antibody response tests. According to a document enclosed from the NY DOH in 1996 to the CDC, if they followed the 2-tier testing requirement for 1995 cases, 81% of non-EM cases would not have been confirmed.

Insurance companies often do not accept doctor-prescribed testing such as PCR, which shows the presence of the DNA of the infecting organism, although PCR is accepted for other diseases such as HIV, hepatitis, and TB. They limit treatment to 28 days, substitute orals for IV, and use the surveillance criteria for reimbursement determination. Therefore, doctors have a dilemma: treating sick patients who do not meet the criteria. Privately, several doctors have revealed that their insurance carriers strongly suggested they either leave the plan or stop treating Lyme patients long term. A few continue to treat, some refer their patients to long-term treating physicians, while others, fearing reprisals or facing economic hardship, stop seeing Lyme patients.

An insurance company letter to a New Jersey patient states: "Unfortunately, a number of unscrupulous practitioners in this and neighboring states have held themselves out as experts in the treatment of Lyme disease. These individuals have subjected patients to improper diagnoses, excessive treatments, inordinately long courses of intravenous therapy, and other activities not supported by science or generally accepted standards of medical practice. Because our organization has been appropriately vigilant and aggressive in dealing with certain practitioners, they have chosen to leave our network."

At issue nationally to patients and doctors is the volume of complaints by medical boards against these treating physicians who already constitute a very small number overall. To address the situation in New Jersey, in 1993, Congressman Christopher Smith, now Veterans' Committee Chair for the House of Representatives, held a public Congressional Lyme forum in New Jersey. Last year, at our request, Congressman Smith's office met with the NJ State Board of Medical Examiners, followed by an LDA meeting with the Examiners.

Attorney General Richard Blumenthal invited us to Connecticut to present New Jersey efforts against Lyme. We then met with Commissioner Garcia and were invited back to discuss our strategy, advocating a regional approach to the problem. The Commissioner agreed to help, and at a subsequent meeting with the senior assistant commissioner in New Jersey, we advocated the same approach. In Rhode Island, we met with Commissioner Nolan and also with Senator Chafee's office and in New York, with State with the Health Department, Office of Professional Medical Conduct, and Governor Patakai's office. We addressed the Pennsylvania House of Representatives majority caucus. Our message has been the same: become educated about Lyme and other tick-borne diseases (TBD's), share data, strategies, and even personnel if necessary. Health departments need to publicize physician education conferences given by the LDA and other organizations. Physicians need to be permitted to treat tick-borne diseases using their best clinical judgment, since cookbook approaches are not getting to the root of the disease.

We must stop thinking that state boundaries govern our actions with TBD's. A study in the Archives of Neurology showing Bartonella henselae, the agent of cat-scratch fever, to be a potential tick-borne pathogenic co-infection in New Jersey, came as no surprise to California researchers who had already discovered it there in ticks, and who are now finding human cases in their research labs.

We need to access the implications of new Red Cross blood donor guidelines, "Accept persons with Lyme disease if they were treated, the disease resolved and at least one year has passed. Those with chronic Lyme disease are not eligible to donate blood." Individuals who had babesiosis are also prohibited from giving blood. The American Society of Clinical Pathologists (ASCP) released blood donor guidelines a few months ago under "serious illness," defer indefinitely babesiosis and Lyme disease.

Today's hearings are not without precedent. Besides Blumenthal's 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 "Direct[ed] the Texas Board of Medical Examiners (BME) 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 the Lyme disease recently due to concerns about OPMC harassment of treating physicians. A letter from my Congressman, Christopher Smith, to the Health Committee, states: "While it is the job of state boards of medical examiners to review complaints logged against doctors and to take action when needed, a concern that was expressed in my state was that some of the complaints were filed not by patients, by but insurance companies (and entities associated with them) who did not want to pay for the costs associated with treating Lyme patients under an aggressive antibiotic regimen. Using a state panel that is supposed to investigate malpractice to help achieve financial gain is simply wrong." A letter from U.S. Congressman Joseph Pitts' (PA) office to the same body states in part "We believe that Lyme disease is a scientific controversy and, consequently, medical boards should not prosecute physicians based on their treatment of this devastating illness."

A resolution, which the LDA helped draft, resulting from those hearings already has 101/105 Assembly cosponsors: "Resolve That this legislative body pause in its deliberations to request 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, until such time as medical research and the medical community have determined the appropriate parameters for the diagnosis and treatment of tick-borne illnesses."

California, Minnesota, Connecticut, New Jersey, and New York (Tick-borne Disease Institute), have enacted or introduced legislation addressing issues ranging from treatment and tick control to mandatory teacher in-service for educators in New Jersey. The Connecticut law (Managed Care Reform Bill #7032) enacted January 1, 2000, appears to be causing problems for patients with Lyme disease. The original bill was crafted to enable patients to receive the appropriate treatment, unfortunately, unacceptable language changes were inserted before passage. The law states that insurance companies cannot deny payment to people with Lyme disease who are treated with antibiotics for 60 days or IV for 30 days, then patients must get a mandatory medical recommendation from a rheumatologist, infectious disease specialist, or neurologist.

Our affiliate, The Greenwich Lyme Disease Task Force, has surveyed physicians on the effects of the Connecticut legislation. Dr. Liegner who has extensive Lyme experience says "In my opinion and experience, Lyme disease is a chronic infection..the insurance legislation does not address this small subset of patients [who require prolonged IV] and in fact does not even address those patients who require oral antibiotics for longer than six weeks. Finding specialists is another dilemma in continuing treatment under this law. There are not enough Lyme literate physicians in the areas of specialization that have been identified by this legislation."

Dr Charles Ray Jones, Connecticut pediatrician addresses the following to the Rhode Island Commission. He has treated over 6,000 children with Lyme, three-quarters are well after 3 months to seven years of treatment, averaging nine months to two years. The remaining one-quarter is still receiving treatment. "Most of these children have been denied insurance coverage of necessary antibiotic therapy because of .Bill#7032. It was easier to obtain insurance coverage for antibiotic therapy for Lyme disease patients prior to the bill..Educate. Do not legislate."

Both doctors'concerns seem justified. Enclosed is a letter of treatment denial for a seven year-old who has a brain SPECT with sever hypoperfusion, Western Blot with specific Lyme bands, and neuropsych testing supporting the Lyme diagnosis. The law is cited by the insurance company as a basis for denial of coverage despite a letter of medical necessity from the treating pediatrician, as the parents are unable to find pediatric specialists in the mandated areas. According to the mom, "I've been in contact with. assistant Attorney General since the beginning of January. He agrees the law was never intended to be used this way [and] has been in contact with Connecticare over this issue but is not hopeful that anything will change."

Another case involves an adult denied further IV treatment despite the fact he had received approval from a board certified neurologist. The Attorney General's office was forced to intervene and even then, a portion of the treatment time was not covered as required. Without the AG's intervention, many would be left to fight for themselves.

Targeting of second opinion doctors remains a concern. Greenwich co-presidents Blanchard and Siciliano comment in their report to the New York legislators "Because of the divide in the medical community on the existence of chronic Lyme disease (in spite of a large body of literature on its existence) there are very few board certified physicians in these specialties who will continue treatment. We are personally aware of two board certified physicians in these specialties (who are unwilling to identify themselves for fear of further repercussions) who have felt the pressure from their group practices to limit Lyme patients. Because they did not heed the warning, one was squeezed out of his practice and the other chose to leave rather than refuse patients."

The LDA's initial fears about the Connecticut law were based on its own past NJ experience. In the mid nineties, we developed NJ bills permitting patients to receive any physician recommended treatment for Lyme disease. Unfortunately, after the successful passage in one house and movement in the other, some legislators appeared to capitulate to insurance company influence. Second legislation was introduced which would have enacted a 56-day treatment provision followed by a mandatory second opinion panel. We were told it was their new bill, or none at all. Attorneys opined that if that new bill became law, it would in effect establish a de facto 56 day treatment regimen for Lyme, one which insurance companies would use against patients. We also had serious concerns about the doctors sitting on the mandated second opinion panel and whether they would become targets of the medical board and/or insurance companies. We killed the bill. In light of the CT law, our concerns seem to be validated.

Lyme disease is so complicated that even physicians whose publications are often quoted to deny persisting infection have been shown to make statements that appear to be conflicting. A 1999 letter from a prominent rheumatologist to the Connecticut Department of Health refers to a specific doctor "treating these people with prolonged courses of antibiotic therapy.patients have usually not required the prolonged courses of antibiotics suggested in his handout."Certain doctors associated with a Lyme organization "are the principal force leading to the overdiagnosis and overtreatment of this illness. Do you have any ideas regarding what to do about this?" Coincidentally, the two physicians named in the letter by the rheumatologist were subsequently charged by medical boards in their respective states.

In 1994, that same rheumatologist wrote to patients: "I would like to invite you to participate in long-term follow-up studies of our patients who have had Lyme disease. It has become increasingly apparent that the Lyme disease spirochete, may persist in some patients for years. Of particular concern, recent studies have shown that the spirochete may persist in the nervous system in a small percentage of patients and may cause chronic neurologic involvement."

Dr. Reinhard Straubinger, a world renown Lyme researcher with famous dog studies at Cornell, wrote to the NY State Department of Health that he was able to culture spirochetes from 3/23 30-day antibiotically-treated dogs (human dosage comparable), detect spirochetal DNA in 20, and quantify spirochetal DNA in 12. "In contrast to many human studies we could show persistent infection, because a lengthy time period separated the phase of treatment and the phase of testing. .the spirochetes may need sufficient time after antibiotic treatment in order to recover and multiply to sufficient numbers so we can detect them with the techniques we have currently available.

Last month, I traveled throughout California for two weeks speaking about Lyme disease to doctors, patients, advocates, and politicians. I had the opportunity to address the newly created California Lyme Advisory Council. I told them that the problems I heard in California mimicked those of the east coast 5-6 years ago: a blindness to the fact that Lyme and other TBD's exist and are mentally and physically crippling thousands of people. I suggested that they could learn from what had happened here in the east. What I did not say is that many in the east need to open their eyes and their minds to the devastation Lyme produces for patients and families alike.

Sometimes even those who accept the seriousness of the disease suffer from the NIMBY syndrome, Not In My Back Yard. Witness an April 4 quote from an Albany rheumatologist, who said he is "quicker to suspect Lyme disease in Capital Region residents these days, even when they don't remember a tick bite and haven't traveled to places. like the Jersey shore." Take it from a resident of the Jersey shore, our Lyme disease is acquired in upstate New York. While in California I met a microbiologist who contracted Lyme in a California desert, yet she cannot convince her employer of that fact, despite taking an entomologist to the desert to bring back the ticks.

The disease is here, there, everywhere, and we better begin to take responsibility for the implications of that fact. We have been contacted by Siberian researchers seriously studying the disease there, South American researchers looking for help, and a neurologist studying the neurological manifestations of the disease in China (I was invited to visit there but world events prevented that from happening). 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 treat it without political interference, we will have maimed, crippled, and killed tens of thousands more, many of them our children. Thank you.

Lyme Disease Association Website
Rhode Island Government
RI Department of Health Lyme Page