RI – Lyme Disease Commission Hearings

2002-04-08 RI – Lyme Disease Commission Hearings

2002-04-08 RI – Lyme Disease Commission Hearings


Hearing of the Committee on Labor and Human Resources


H.R. 1254

infectious Diseases

Roberts, David M.,, “The bdr Gene Families of the Lyme Disease and Relapsing Fever Spirochetes,” Emerging, 6(2), 2000. Centers for Disease Control


Centers for Disease Control & Prevention November 17, 2002


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.
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.

9 According to a document enclosed from the NY DOH in10

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
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
pathogenic co-infection in New Jersey,
discovered it there in ticks, and who are now finding human cases in their research labs.

Archives ofshowing Bartonella henselae, the agent of cat-scratch fever, to be a potential tick-borne12 came as no surprise to California researchers who had already


CDC LD Chart: LD Cases reported by State Health Departments 1990-1999


Bangor Daily News 3/30/02 as reported by Maine’s Bureau of Health


Aetna guidelines, Oxford Health, Medical Policy Manual


NYSDOH to CDC April 15, 1996


Horizon Blue Cross Blue Shield letter to patient, August 24, 1999


Arch Neurol. 2001;58:1357-1363 Concurrent Infection of the CNS by Borrelia burgdorferi & Bartonella henselae


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
months ago

13 The American Society of Clinical Pathologists (ASCP) released blood donor guidelines a few!under “serious illness,” defer indefinitely babesiosis and Lyme disease.14

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,
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.”
Assembly Health Care Committee held two hearings on the Lyme disease recently due to concerns about
OPMC harrassment 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.”
“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.”

15 the Texas state16 New York17 A letter from U.S. Congressman Joseph Pitts’ (PA) office to the same body states in part18

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 inservice
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 affilaite, 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 are still receiving treatment. “Most of these


American Red Cross website


Press release American Society of Clinical Pathologists


Public Hearing on Insurance Coverage of Lyme Disease


[Texas] Senate Committee on Administration, The Prevalence of Tick-Borne Illnesses in Texas, Interim report, 77th

legislature, November 2000


Congressman Christopher H. Smith letter to Chairman Richard Gottfried, November 27, 2001


Congressman Joseph Pitts’ office letter to New York Assembly Health Care Committee


Current, New York Assembly Resolution LBDC(P) 3-5-02


The Greenwich Lyme Disease Task Force Letter to NY Assemblywoman Nettie Mayersohn


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.
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

23 Without the AG’s intervention, many would be left to24

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 letetr 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?”
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

25 Coincidentally, the two physicians named in the letter by the


Jones letter to RI Commission, April 5, 2002


Letter (3/29/02) from PC to LDA President Pat Smith regarding Connecticut insurance law


Brooks letter to GLDTF March 29, 2002


The Greenwich Lyme Disease Task Force Letter to NY Assemblywoman Nettie Mayersohn


M.D. letter to G. K., Director of Health, DOH, Milford, Connecticut, July 30, 1990


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 antibioticallytreated
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
antibitoic 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 was
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 (actually 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 practice medicine without interference, we will have maimed, crippled, and killed
thousands more, many of them our children. Thank you.

28 tens of


M.D. letter to physicians, August 11, 1994


Dr. Straubinger’s letter to NYSDOH, November 22, 2001


Death certificate

United State Senate, August 5, 1993