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
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.
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
!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
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
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
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.