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Sunbury, PA – Conference Hosted by PA Representative Merle Phillips

Sunbury, PA – Conference Hosted by PA Representative Merle Phillips


(For introduction: Pat Smith, President, Lyme Disease Association; Member, Board of

Directors, ILADS, International Lyme & Associated Diseases Society; Advisor, Greenwich Lyme

Disease Task Force; Former chair, Governor’s Lyme Disease Advisory Council (NJ); Former

President, Wall Township Board of Education)

Lyme Disease Association President Pat Smith’s Remarks in Sunbury, PA Forum

Sponsored by PA House of Representatives Majority Leader, Merle Phillips

The Lyme Disease Association, LDA, is an all-volunteer national organization providing Lyme

disease education and funding for research projects coast to coast, a number of which have been

published in peer reviewed literature. Several past projects LDA has funded in Pennsylvania

were at Fox Chase Cancer Center and at University of Pennsylvania. Additionally, we are

funding a study here looking for the Lyme disease bacteria in semen to take the first step to

determine whether Lyme disease may be sexually transmitted.

The LDA has a Pennsylvania Chapter and has five national affiliates including the Lyme Disease

Association of Southeastern Pennsylvania. Along with its CT affiliate, the Greenwich Lyme

Disease Task Force, LDA has partnered with Columbia University to open an endowed chronic

Lyme disease research center to be housed at Columbia. We are beginning a national

fundraising effort for the center, with LDA and GLDTF already having already contributed $.7

million, leaving $2.3 million remaining to open the center.

Lyme is the most prevalent vector-borne disease in the U.S. and the most prevalent vector-borne

bacterial disease in the world, yet is rarely given the weight it deserves. The situation facing

patients in Pennsylvania 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) at Aberdeen Proving Grounds, the LDA was surprised at its

aggressive program, which includes impregnating army 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, which will show the soldiers

where the heaviest tick concentrations and highest tick infectivity rates are, allowing armies to

maneuver around them.

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NASA and the National Institutes of Health, 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. The NASA official in charge of the project spoke at the last LDA conference.

As early as 1993, US Senator Edward Kennedy held hearings in Washington, 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. In 2002, the

US Senate passed legislation (S 969) that would provide $50M over five years for research for a

diagnostic test, and for prevention, and education. Pennsylvania Senator Rick Santorum worked

closely with Connecticut Senator Dodd in the passage of this bill, and the LDA was heavily

involved in that process. Unfortunately, the House did not review the bill before the session

ended, so the bill died. It will be reintroduced into congress again this session.

Cases of Lyme disease that are reported from each state to the Centers for Disease Control &

Prevention, CDC, must meet the CDC surveillance criteria. The reporting system itself creates

several problems, the first being the actual number of Lyme cases is estimated to be 10 times

higher than reported cases. In the year 2000, nationally reported case numbers rose 8% with

17,730 cases reported, which equals 177,300 actual new cases for the year 2000. New York,

Connecticut, Pennsylvania and New Jersey, respectively, are the top four states in the country for

Lyme disease. To date, Pennsylvania has reported 2,848 Lyme cases in the year 2002, which is

about 20,848 actual cases. Only four PA counties had no reported cases from 1999-2000, and

Chester and Cameron Counties had the highest incidences. Northumberland County where we

are tonight is endemic for Lyme (two cases acquired or infected vector present) and is in the top

16% of counties in PA for reported Lyme disease cases (11/67).

Another problem occurs despite a CDC warning on its website which states “This surveillance

case definition was developed for national reporting of Lyme disease; it is not appropriate for

clinical diagnosis.” Many physicians still mistakenly diagnose based on the CDC case definition.

The surveillance definition states that one must have either an EM rash or positive serology plus

major system involvement. Studies have shown that the EM rash appears less than 50% of the

time, and that other types of rashes may appear, or there may be no rash at all. Lyme disease tests

are inaccurate

!antibody response tests such as ELISA and Western Blot can be negative when!underActivities Regarding Lyme Disease and Other Tick-borne Diseases, US Army

 

the victim has Lyme disease. Many insurance companies often do not accept doctor-prescribed

testing such as PCR, which actually tests for the Lyme bacteria, although PCR is accepted for

other diseases such as HIV, hepatitis, and TB.

Insurance companies often use the CDC surveillance criteria for reimbursement determination.

They may also limit treatment reimbursement to four weeks and substitute orals for IV.

Therefore, treating physicians 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

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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

Lyme disease situation in New Jersey, in 1993, Congressman Christopher Smith, now Veterans’

Committee Chair for the US House of Representatives, held a public Congressional Lyme forum

in New Jersey. At LDAs request two years ago, Congressman Smith’s office met with the NJ

State Board of Medical Examiners, followed by an LDA meeting with the Examiners to discuss

harassment by the licensing board.

State hearings on Lyme disease are increasing. Attorney General Richard Blumenthal held

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 due to concerns about OPMC

harassment of treating physicians. A letter from 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, resulted from those hearings and passed the NY State

Assembly last year. It states in part “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.” A bill which would reform

the Office of Professional Medical Conduct in NY, OPMC, also passed the Assembly last year.

Both measures will probably be reintroduced this year.

The LDA was invited to testify before the Rhode Island Lyme Disease Commission last year.

As a result of the hearing, Rhode Island successfully passed a law which protects physicians

from harassment merely for treating Lyme disease patients. Additionally, the state was able to

negotiate an agreement with Blue Cross that helps patients with the disease receive long term

treatment for Lyme disease. Some bugs remain to be worked out in the agreement, and a Lyme

group in RI is currently working on that issue.

California, Massachusetts, Minnesota, Connecticut, New Jersey, and New York, have enacted or

introduced legislation addressing issues ranging from Lyme Advisory Councils to 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. Getting treatment has become more difficult. The original bill was

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crafted to enable patients to receive the appropriate treatment, unfortunately, unacceptable

language changes were inserted before passage.

LDA has advocated a regional approach to the Lyme problem and has met in Connecticut with

State Attorney General Richard Blumenthal and Commissioner of Health Joxel Garcia, in New

Jersey with Senior Assistant Health Commissioner Blumenstock, and in Rhode Island with State

Health Director Pat Nolan. In New York, LDA has met with representatives from the State

Department of Health, Office of Professional Medical Conduct, and Governor Patakai’s office.

Here in Pennsylvania, we spoke to the Pennsylvania House of Representatives majority caucus.

Last year, I traveled throughout California for two weeks speaking about Lyme disease to

doctors, patients, advocates, and officials. 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 was that many in the east need to

open their eyes and their minds to the devastation Lyme produces for patients and families alike.

Last fall, Congressman Christopher Smith hosted a meeting for the LDA in Washington, DC

with the military. There, several doctors presented data to about a dozen military officials

supporting the persistence of the disease. The reason for the meeting is the LDA has received

reports from the military and their families about not being able to receive appropriate treatment

for the disease. The officials did admit they had similar treating problems inside as we were

having out outside. Subsequently, we have had communications with some of the officials.

An issue with TBDs that has come to the forefront is how they affect the blood supply. New Red

Cross blood donor guidelines state “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) blood donor guidelines state

“serious illness,” defer indefinitely babesiosis and Lyme disease. In their April 1999 report to

Congress entitled

CHPPM expressed its concern about the blood supply and tick-borne illness, mentioning

Ehrlichiosis and possibly Rocky Mountain spotted fever as having been transferred through

blood transfusions. Several studies in peer review discuss the actual transmission of babesiosis

through the blood supply.

Lyme disease is here, there, everywhere, and we had 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 have heard of people getting the disease

from infected ticks in the desert. 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 practice

medicine without interference, we will have maimed, crippled, and killed tens of thousands

more, many of them our children. Thank you.