From the Gettysburg Times, 10 April 2000:

LYME DISEASE
Advocates for improved treatments vow to
succeed on the political front
By ROBERT HOLT - Times Staff Writer

Photos courtesy of Vicki Karam Smith
About 150 participated in a rally on Gettysburg’s Lincoln Square 
Saturday to raise awareness for Lyme disease victims.

Long after the weekend rally cries of “TOFU” faded in Gettysburg,
Lovette Mott is still encouraging other Lyme disease victims to do more
than get “ticked off and fed up” about being refused medical treatment.

“This is a political issue. It’s totally political,” says Mott, a 
lawyer forced to close her practice of 17 years due to the debilitating 
health effects of the disease.

Getting legislative help for Lyme patients is a battle that can be won 
with greater public awareness, says the mother of two who was in her 
fourth year of seminary studies when infected with Lyme.

Lovette Mott calls for legislative reforms
that will end medical treatments for Lyme
disease patients, and improve the
standards for diagnosis of the disease.


“I want people to know there are many, many people who are
undiagnosed with Lyme disease and that Lyme disease is in Adams
County,” says Mott, one of several persons leading a national call for 
improved medical treatment of Lyme patients.

“There were four deer ticks that were picked off people in the 
(hospital) emergency room just in March,” she says. “We want people to 
know that people are dying from this disease.”

Mott is among some who say state Health Department officials are not
recording all Lyme disease reports when they are notified.

According to state health reports, 15,429 Lyme cases have been
reported since 1980. Health officials say among the state’s 12 million
residents between 1994 and ’98 Lyme disease infections were reported
at an annual average of 2,134.

Adams County state Rep. Stephen Maitland says he has questions about
statistics that estimate between one and nine persons in every 100,000
are infected with Lyme by deer ticks.

“There’s more than nine people here from Adams County,” says
Maitland, who has at least one relative living in the county diagnosed
with Lyme.

Maitland says he is pushing for intervention by the state Legislature 
and Gov. Tom Ridge’s administration.

So far, he has received vaguely-worded responses from state Physician
General Robert Muscalus and Health Department legislative affairs
Director Deborah Griffiths.

Maitland says he will push for regulatory and legislative intervention.

Mott says the replies to Maitland’s inquiries are indicative of the 
real problem for Lyme victims. She claims that bureaucratic officials, 
medical boards, researchers and insurance companies are the biggest 
obstacles for Lyme patients seeking treatment.

“We want people to know that our doctors are being harassed out of
existence for treating us with long-term antibiotics, which is the only 
hope that we have right now of getting well,” she says.

“The political rally is to act up against the state agencies and the 
health insurance companies that are trying to take our doctors’ 
licenses,” Mott says.

Along with the Saturday rally that drew about 150 people, Mott helped
coordinate a conference on Lyme and its misdiagnosis.

“We’re trying to educate the doctors with a symposium,” she says.

Mott says Lyme patient advocates are working to ease the criticism of
physicians who continue antibiotic treatments over an extended period.
Many of those doctors face complaints from insurance officials and
sanctions by state medical boards.

Dr. Perry Orens of Great Neck, N.Y., who developed an expertise in
Lyme after his daughter was infected with the disease more than 10
years ago and who treated Mott’s children, had his medical license
revoked last year for bucking accepted medical standards and giving
patients extended treatments.

Dr. Perry Orens of Great Neck, N.Y., became
an expert on Lyme after his daughter was
infected with the disease more than 10 years
ago.

“What they took from me pales in
comparison to what will happen to
thousands of patients who go untreated
because so many doctors in Maryland,
New York, New Jersey, Connecticut and
Pennsylvania are really afraid to treat to
Lyme patients,” Orens says.

“I did not want to leave my patients the
way they forced me to. The night before
Thanksgiving, they took my license away, leaving all of the patients I 
was treating at the time in limbo, searching for doctors who cared,” he 
says.

Now retired, Orens says health coverage providers pressure physicians
not to continue antibiotic treatments beyond three weeks.

“Why? Because the insurance companies will save millions and millions
of dollars if they abrogate the contract you have with your insurance
company that entitles you to this treatment,” he says. “They have 
devised a cook book approach to our illness.”

The controversy over treatment of the disease, considered by some to
be the fastest growing epidemic in the nation, has doctors reluctant to
handle patients with Lyme symptoms.

“When they see that you may have Lyme, they try to send you
someplace else. There’s no place to go,” he says. “I will not give up 
this fight.”


Dr. Joseph Burrascano Jr. told the rally
that leaders of the medical profession,
researchers and health insurance
industry officials have actively worked to
oppose proper diagnosis and successful
treatments for Lyme disease patients.

Dr. Joseph Burrascano Jr., 48, a
Long Island physician who treated
Mott and others from Pennsylvania, is
now under medical board review for
prescribing extended treatment of
Lyme patients after presenting
legislative testimony on the issue.

Burrascano, who contracted Lyme at age 12 and was cured at 27 and
has family members with the disease, says the prevailing medical view on
treatment defies two decades of research.

“It’s a rat’s nest,” he says.

“One thing we know is the government-backed, university-based
physicians and researchers, and the government employees too, who are
supposed to be helping us, have been doing other things,” he says.

He says researchers and doctors have denied patient claims, belittled
their symptoms, and minimized the impact that Lyme has on patients. But
Burrascano and Orens are a minority among medical experts.

The general view among medical practitioners and health insurance
administrators is that Lyme can be cured with three weeks of antibiotic
treatment instead of seven or 12 months.

Mott says there are cases of successful treatment that show the 
effective period is a minimum 12 months of oral antibiotics or seven 
weeks of intravenous therapy.

“There are doctors paid by insurance companies to come testify against
us so that our insurance companies can cut us off from long-term IV
(treatment). There’s a woman from our Lyme support group who was
cut off by Blue Cross because she has been on IV for too long. And it is
the only thing that’s making her well,” Mott says.

There is even controversy over a medication developed by SmithKline
Beecham Pharmaceuticals for Lyme patients. LYMErix is considered an
effective method of prevention, but it also poses risks for some 
patients who have raised some questions about its use.

“There’s (doctors) who have interest in the LYMErix vaccine who want
people to think this is curable in three weeks of antibiotics,” Mott 
says.

Tim Aries, a Lyme patient in New Jersey who operates an internet home
page about the disease, say there is also much controversy about
LYMErix.

“I’ve been treated with antibiotics for two and a half years and I still
can’t be cured,” he says. “I live on pain killers on a daily basis.”

Aries says he is watching a class action lawsuit filed in Philadelphia
against SmithKline Beecham on behalf of Lyme patients who suffered
adverse side effects of LYMErix.

“It’s a fact that 30 percent of the entire population has a 
predisposition to Lyme arthritis from the vaccine, which can leave them 
worse off than if they were bitten by the (deer) tick,” he says.

Burrascano says the medical establishment is an “inbred group” that
supports “bogus research,” publicly and privately ridicules Lyme
patients, works to limit their insurance coverage, and criticizes 
extended treatment plans regardless of the success.

“These people are supposed to be helping us. They’re the
government-backed researchers our tax money goes to support,” he
says.

“Our researchers today are more interested in furthering their own
personal agendas. Real patients never seem to be their concern. They
represent the darkest side of medical research,” Burrascano says.

He says researchers involved in Lyme issues do not cooperate with each
other, compete for prestige and grants, and are ethically questionable 
to insurance companies, laboratories and commercial ventures.

The resistance to the patients’ call for extended Lyme treatment goes up
to the Centers for Disease Control, medical societies and researchers
and medical boards in many states.

In hopes of quelling the debate, U.S. Sens. Arlen Specter and Rick
Santorum are advocating budget proposals to fund more research on
Lyme. Specter has proposed a budget amendment that would increase
government research for Lyme.

Santorum says there is a lot of mistrust of National Institutes of 
Health research among Lyme patients and their doctors. He wants passage 
of legislation that would authorize $40 million for the National 
Insititutes of Health to get independent research on Lyme. The measure 
includes funding to develop a test for accurate diagnosis of the 
disease.

The legislation would give another $40 million to be allocated to the
Centers for Disease Control to monitor the spread of the disease, to
develop deer tick control criteria, and to set up public education
programs.

“One of the things that is frustrating is we don’t know how widespread
the disease is, because we don’t have an accurate diagnosis,” he says.

“We don’t know how many people need to be treated who are going
untreated, walking around all over the northeastern United States and
other places in this country, who are not getting the treatment they 
need, and as a result are getting sicker and sicker,” Santorum says.

Even with the pledges of support from legislators, Mott says the battle 
is far from over and is difficult to wage as Lyme disease saps her 
strength and leaves her with an inability to read.

She says it took a great deal rest for her to build up physical stamina 
for the rally and symposium.

“It will take another week of rest for many of us,” she says.

“But, we’re fed up with dying. We’re fed up when our doctors’ licenses
are being revoked.”

Lyme Disease Advocates for improved treatments vow to succeed on the 
political front, Gettysburg Times, 10 April 2000.
[Note: Link not available as of 28 May 2000]
http://www.gburgtimes.com/news/lyme-410.shtml

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