 | Opinion / Editorial: The Trial of Dr. Charles Ray Jones |
 Lyme
Disease Divide
Hartford Courant, United
States
By Gary Santaniello
|
Lyme Disease Divide
| A Schism Over Treatment Philosophies Puts A Connecticut Pediatrician's
License On The Line
|
Dr. Charles Ray Jones, a New Haven pediatrician who has treated some 10,000 children with Lyme disease, listens as a Yale University School of Medicine professor testifies against him before the Connecticut Medical Examining Board.
(Shana Sureck, Hartford Courant)
Data on Lyme Disease
Elizabeth Ellis, of Arlington, Mass., attends Jone's licensure hearing with her three children, Andrew, 9, Louisa, 7, and Olivia, 5, all of whom Jones has treated for Lyme disease. The woman in black is Susan Marra, Jones' naturopath.
(Shana Sureck, Hartford Courant)
During a break in testimony, Charles Ray Jones gives a pat on the head of Devin Pfister, of Washington, N.J., who came with his brother Brendan, 12, and mom Mary (at right) to support the doctor who treated him for Lyme disease.
(Shana SUreck, Hartford Courant)
|
New Haven, CT:
The current epicenter of what some call "the Lyme wars" is a warren of small
rooms on the nondescript ground floor of Madison Towers, a 17-story apartment
building on Park Street in downtown New Haven.
This is where Dr. Charles
Ray Jones, whom some consider the world's foremost pediatric Lyme disease
specialist, practices medicine. A few blocks away is Yale University School of
Medicine, where Lyme disease was first researched, and where its earliest
treatment protocols were developed in the years after the disease was identified
in 1975. It is also where the current orthodoxy stands in fierce opposition to
Jones's approach to treating the disease.
Sitting at a desk in one of his ...
small examining rooms, Jones doesn't appear to
be a man engulfed by controversy and facing the possible loss of his license to
practice medicine. He is a large man who wears thick glasses and speaks quietly,
deliberately, almost inaudibly.
"I'm not a renegade," he said. "I don't
look for trouble. It finds me."
Dr. Eugene Shapiro, a professor of
pediatrics and epidemiology at the medical school, helped write the guidelines
to treat Lyme disease that have been endorsed by the U.S. Centers for Disease
Control. Shapiro said he has received many calls from physicians in Connecticut
"begging me to see their patients so they don't have to see Dr. Jones. It is not
an uncommon call."
Transmitted to humans by the painless bite of the tiny
black-legged deer tick, Lyme disease presents doctors with a host of challenges.
Once the corkscrew-shaped bacterium, called a spirochete, enters the
bloodstream, it can cause a wide range of constitutional, musculoskeletal and
neurological symptoms. Its ability to change forms often makes it difficult to
detect and destroy, and the longer the symptoms go untreated, the more
intractable they become.
The strong belief in the U.S. medical
establishment, represented by the 8,000-member Infectious Diseases Society of
America, is that the use of antibiotics on a long-term basis to treat the Lyme
bacterium is not only ineffective, but can be harmful to patients. But a group
of about 300 doctors, academics and other health-care professionals adamantly
believes that the establishment is in denial, not only over the effectiveness of
a long-term course of antibiotics, but over the very existence of chronic Lyme
disease. Thus, in effect, there are two standards of care for Lyme disease, and
the onus is on the patient to be aware of it.
Shapiro and establishment
doctors like him say Jones too often diagnoses Lyme disease where it doesn't
exist, by their definition of the disease. As a result, they say, his use of
antibiotics is too aggressive and much too prolonged. In fact, some of Jones's
patients have been taking the drugs for years. Doctors in the medical
establishment generally believe that most patients who acquire Lyme can be cured
with a single course of antibiotics lasting from 14 to 28 days.
The other
camp, led by what its advocates call "Lyme literate" doctors, believes Lyme is
more multifaceted than the mainstream community insists and, particularly in its
late stages, requires more aggressive antibiotic regimens, at least until all
symptoms are resolved.
"It's a polarized situation, a total war going
on," said Diane Blanchard of Greenwich, whose children have been treated by
Jones. "And the fallout, once again, is borne by the patients." Blanchard is
co-president of Time for Lyme, a Greenwich-based advocacy group that promotes
wider education and research for tick-borne illnesses.
The disease, named
after the town on the Connecticut shore where it was first identified, and now
found in all but a handful of states, is pitting doctor against doctor. "I've
never observed any disease that has caused so much controversy in the medical
community," said Dr. Steven Phillips of Wilton, whose practice consists entirely
of Lyme patients. "It's a hotly contested area of medicine."
Dr. Charles
Ray Jones is 77 years old. He graduated from New York Medical College in 1962,
interned in pediatrics at St. Luke's Hospital in Manhattan and went on to become
chief resident at Memorial Sloan-Kettering Cancer Center.
The demands of
doing research while managing a busy private practice motivated Jones to leave
New York City in 1968 for a pediatrics practice in Hamden. By the middle of the
next decade he says he began encountering a new form of juvenile arthritis,
which shortly came to be identified as Lyme disease. Since then, Jones has
treated more than 10,000 children for Lyme from virtually every state, and from
around the world.
Jones said that the children who end up as his patients
are often children with persisting and more serious symptoms of Lyme. In fact,
he said, 80 percent of his cases are children with a chronic form of the
disease. They come to him in every conceivable condition, he said, including
those who are blind as a result of Lyme, or paralyzed, or wracked with
pain.
Jones said that of all the children he has treated, "about 75
percent are [now] well, and without symptoms."
At the end of the hallway
in his office is Jones's "chart room," a windowless box in which four metal file
cases, each 6 feet tall and filled on both sides with bulging manila folders,
occupy almost all the available space. These are the files of his roughly 3,000
active patients, containing the records of each office visit, the results of
every test, and the complete chronicle of their afflictions.
It's the
content of two of those files, however, that has placed Jones is in the middle
of a state Medical Examining Board hearing in Hartford that will determine
whether he will be allowed to continue treating patients.
In late 2005,
the state Department of Public Health charged Jones with violating "the
applicable standard of care" for his treatment of two young siblings who live in
Nevada. The complaint was initiated by the children's father, who is involved in
a custody dispute with their mother, an emergency room nurse. After
investigating the complaint, the health department brought charges to the
medical board, alleging that Jones diagnosed Lyme disease in the children
without examining them, that he failed to consider other causes for their
symptoms, and that he improperly prescribed antibiotics.
At his fourth
hearing date on Sept. 7, Jones denied all of the charges. Because of the volume
of Lyme patients he has seen in more than three decades, he told the three
doctors from the Medical Examining Board who are hearing his case, "I am
entitled to rely on my clinical experience in addressing the needs of a severely
sick patient population."
Jones's hearing began March 23; the last
scheduled session is Sept. 28. When the hearing is completed, the full 15-member
state medical board will decide whether to accept, reject or modify the panel's
recommendation, and decide whether, after four decades of practicing medicine,
Jones's license should be revoked or other disciplinary action taken. Because it
is an administrative hearing based on findings of fact, Jones's grounds for
appeal are limited.
The prospect of losing Jones's services terrifies his patients and supporters,
some of whom have traveled from as far as Florida simply to support him at the
hearings.
"You have to understand how important and beloved Jones is to
the Lyme community," said Sheila Lederman, who came from Parkland, Fla., west of
Boca Raton, with her daughter, Jessica, to attend a hearing in June. Jessica,
now 18, was first treated by Jones six years ago. "He's saved a lot of
children," Lederman said. "That's why people call him a saint. I'll do
everything I can for this man."
Virginia Anez, who lives in Boynton Beach, Fla., attended the same hearing with
her 10-year-old daughter, Mary Ann, also a patient of Jones.
"Of course
I'll help him," she said. "There are things in life you do no matter what, and
Dr. Jones is one of those things."
Debbie Siciliano of Greenwich, the
other co-president of Time for Lyme, said she has been a staunch supporter since
Jones successfully treated her son for Lyme nearly a decade ago. She called his
prosecution "a witch-hunt against Lyme-literate doctors" and "a crime. They're
taking away these kids' only hope."
The case is also being watched by
state Attorney General Richard Blumenthal, who has been closely involved with
issues involving the reporting, diagnosis and treatment of Lyme.
"I'm
very concerned there may be a perception, rightly or wrongly, that care for Lyme
disease is discouraged" by the charges against Jones, Blumenthal said. "A lot of
people are watching, and it may have broader implications." The case, Blumenthal
added, "certainly has acquired a larger dimension than a single
individual."
In part, that's because the proceedings against Jones appear
to be part of a pattern against doctors who take an aggressive approach to
treating Lyme, said Pat Smith, the president of the Lyme Disease Association, a
national nonprofit organization, based in Jackson, N.J. Smith said that more
than 30 Lyme doctors in 10 states have been brought before state medical boards
since the early 1990s. Most recently, in June, Dr. Joseph Jemsek, an infectious
disease specialist in North Carolina, was found guilty of inappropriately
diagnosing and treating Lyme. His license was suspended for a year, but the
suspension was stayed, and restrictions were placed on his practice.
Even
more troubling than the charges against Jones, said Smith, is "the terrible
climate that has been deliberately created by vested interests and others in
this country to keep Lyme physicians from wanting to treat patients. If we had a
wealth of treating physicians, we wouldn't be seeing these situations happen.
That, to me, is the real story."
The Jones case may be particularly
fraught because he is a pediatrician. Children could be considered Lyme's most
vulnerable victims since playing outside in suburban yards puts them for
extended periods in habitats favored by deer ticks.
"I don't know what's
going to happen to these children if he can't practice anymore," said Paula
Capasso, a Guilford resident whose 17-year-old daughter, Alexandra, has been a
patient of Jones's since 2000. "It scares me, because we're in deep trouble if
this goes bad."
Despite Connecticut's dubious claim to fame as the home
of Lyme disease, the state health department, citing budget restraints,
eliminated the mandatory reporting of Lyme by laboratories in 2003, although
doctors are still charged with reporting them. In 2002, Connecticut ranked
second in the nation, with 4,631 cases of Lyme disease reported. In 2003, after
labs stopped having to inform the state about Lyme cases, the number of reported
cases fell 70 percent, to 1,403.
But it's clear that the incidence of
Lyme in Connecticut is rising. Thirty-four percent more cases were reported in
2005 than in 2004, with the largest increases in New London, Middlesex and New
Haven counties. Although Connecticut overwhelmingly has had the highest rate per
capita in the country since 1992, the state now ranks seventh nationally in the
number of reported cases. It's impossible to know what the state's rank would be
if required reporting by laboratories were re-instituted. This doubt is mirrored
nationally, as well. Across the country, 21,304 cases were reported to the CDC
in 2005, an 82 percent jump in 10 years. But the CDC admits its strict reporting
criteria captures just 10 percent of actual Lyme cases.
Meanwhile,
Connecticut appears to be holding its own in its role as Lyme disease
central.
"It's epidemic around us this year," said Dr. Mary Cummings
Satti, an internist in Old Lyme. "It's just everywhere right now."
And
the state's attorney general keeps pushing state officials to beef up its
reporting requirements. At this point, although doctors are supposed to inform
the health department about cases of Lyme, a strict mandate for laboratories to
do so is recognized as being critical to gauge the true incidence of the
disease. At a public hearing on Lyme in January 2004, Blumenthal urged the
Public Health commissioner, Dr. J. Robert Galvin, to establish a better
reporting requirement. Although Galvin said one would be in place by 2005, more
than halfway through 2006, the old system remains. In a July 25 letter to
Galvin, Blumenthal called the under-reporting of Lyme "particularly harmful for
the public health." It neutralizes preventive efforts and makes those with
symptoms less likely to seek care if it isn't being reported in great numbers,
he said.
What most concerns Blanchard, the co-president of Time for Lyme,
is that Connecticut's Lyme numbers represent "the tip of the iceberg," and
affect the funding Connecticut receives from the CDC for state health programs.
"It's been left in the hands of grassroots organizations to support the citizens
of this state," she complained. "Why is that?"
The simple answer is
because of the bitter battle over the standard of care, a battle that exists
because there is no direct test to identify the Lyme bacterium. Without one,
there's no way to determine if the infection has been eradicated, so the
diagnosis of Lyme remains a clinical one.
On one side of this fight is
the Infectious Diseases Society of America, or IDSA. This large organization of
physicians, scientists and other health-care professionals with specialty
training in infectious diseases has established guidelines for diagnosing and
treating Lyme. Adopted by the CDC, these guidelines have become the de facto
national standard. The society believes Lyme causes largely objective symptoms
that can be cured with a limited course of antibiotics, typically not more than
21 days.
On the other side is the International Lyme and Associated
Diseases Society, or ILADS, founded in 1999 by physicians and academics who
believe mainstream medicine is too conservative in its treatment of Lyme. A much
smaller group of practitioners, they are more proactive in advancing the
standard of care based on what they say is new research and on new clinical
findings its members uncover. They say Lyme should be treated with antibiotics
until all symptoms are resolved, and usually at least two months beyond that to
be sure the infection is eradicated.
Other than agreeing that Lyme can be successfully treated if caught early, the
two camps agree on little else: testing protocols, the use of antibiotics,
acceptable research, even whether there is such a thing as chronic Lyme disease
(one side says it's merely persisting symptoms, the other a persisting
infection).
"It's like two people speaking different languages and trying
to communicate," said Dr. Kenneth Liegner of Armonk, N.Y., a leading physician
associated with ILADS, the smaller, more Lyme-focused group. "It's very nasty,
very destructive."
According to Dr. Henry M. Feder Jr., who specializes in pediatric infectious
diseases at Connecticut Children's Medical Center in Hartford, "the great, great
majority of Lyme patients fit a very straightforward kind of
pattern."
Or, as Shapiro, from Yale, put it, "Lyme disease in Connecticut
is not all that hard to diagnose. The bottom line is, Lyme disease causes
objective findings. If a patient has only non-specific symptoms, it's unlikely
due to Lyme."
As for what Shapiro defined as objective evidence marking
this pattern - a rash, often, but not always, in the form of a bull's-eye;
swollen joints, facial paralysis and meningitis - Jones said, "Unfortunately, 99
percent of the people I see don't fit into those categories. If one uses [the
infectious diseases society] guidelines, then very few people are going to have
Lyme."
The controversy over the use of antibiotics boils down to
diametric differences on costs and benefits. Shapiro said he believes extended
courses of antibiotics, beyond being expensive, can cause gallstones, heart
infections and create treatment-resistant "superbugs."
"If there was
evidence that long-term antibiotics made patients better," he said, "I'd jump
right on the bandwagon."
But for Jones, the benefits outweigh the risks,
and not just in a child's quality of life. Taking into account the cascading
effects of untreated or under-treated Lyme, which can lead to neurological and
cognitive damage, Jones said that by treating until symptoms resolve, "you're
enabling a child to be well and fulfill their genetic potential, in terms of
going to school, being part of the workforce, and contributing to society's
well-being."
Dr. Phillips of Wilton, a past president of ILADS,
characterizes himself as relatively conservative in his use of long-term
antibiotics. He said it was "a huge judgment" when to prescribe antibiotics.
"But with sicker patients, it shouldn't be controversial at all."
Satti,
the Old Lyme physician who described herself as a traditionalist who treats her
patients "with a little bit of flexibility," nevertheless has concerns about
long-term antibiotics. She said she asks herself, "'OK, if I go down this path,
could I do more harm than good?' These treatments are not benign. And until we
understand it better, I'm not willing to take that risk."
Meanwhile, all
these conflicts involving Lyme feed the frustration of parents who say they've
gone in vain from doctor to doctor and been told their child doesn't have Lyme,
and who say they've been forced into becoming self-taught experts on the
disease. Guilford resident Capasso said she attends medical conferences on Lyme
"because I really don't trust doctors anymore." She paused. "I trust Dr.
Jones."
Feder, of Connecticut Children's Hospital, said not having an
answer for patients with persisting symptoms beyond the standard course of
antibiotics, whatever their cause, "is where traditional medicine lets these
patients down." Yet whatever remains wrong with these patients, Lyme isn't
always the case, he said. "The bias of ILADS is to make everything fit Lyme
disease."
Why the apparent intransigence to new ideas? Jones attributed
it to a number of reasons, among them an "old-boy network" of doctors who talk
only to each other, don't brook any criticism and "don't go outside of their
box." He also believes that many establishment physicians are compromised by
conflicts of interests because of their involvement with insurance and
pharmaceutical companies, through consulting contracts, research, and patent
applications.
Before he turned to medicine, Jones briefly attended Boston
University's Divinity School, where he met Martin Luther King Jr. He said he
learned from King "to be willing to take a stand, regardless of the way others
feel, as long as you were doing what was right."
And that's how he feels
about the repeated challenges to his methods by mainstream doctors. "I know I'm
right," he said. "If Dr. Shapiro practices for another 20 years, he would not
see as many patients as I see in a year."
Voices of moderation in this
debate are hard to find. "There are really very few practitioners that are in
the middle," explained Satti.
"To the layperson," she continued, "I could
see how you'd say, 'What the heck is wrong with the medical community?' But it's
not that cut and dried. It's a new disease, and we just don't understand it
yet."
There is no acquired immunity with Lyme disease, and the unique
response of each person's immune system is another huge variable. In addition,
new strains of Lyme are being discovered regularly - there now are more than 300
- and the effects of co-infections from the same tick bite are slowly becoming
understood. That's why, more than three decades after the disease was first
identified, Satti said of Lyme, "It's getting more complicated."
She was
able to take a step into one direction rarely found among those who treat Lyme.
It's possible, she said, that mainstream medicine may ultimately reflect the
views of the "Lyme literate" community.
"I say that honestly thinking
that these people the medical community considers quacks are probably all
right," Satti said, "and 10 years from now we'll realize their aggressive
approach was absolutely right."
There have been positive developments regarding Lyme. In July, Smith, of the
Lyme Disease Association, and a delegation that included four members of
Congress met for the first time with CDC director Dr. Julie Gerberding. Smith
said she was encouraged by the response to the dozen or so issues raised. Dr.
Raphael Stricker, president of ILADS, said he's been invited to be part of a
discussion on long-term therapy for Lyme patients at a meeting next month of the
Infectious Diseases Society of America.
U.S. Sen. Christopher Dodd has
co-sponsored a bill that, among other things, will provide $100 million over
five years for Lyme research. And Time for Lyme and the Lyme Disease Association
is about $200,000 short of raising the $3 million it needs to establish the
first Lyme disease research center in the United States, at
Columbia-Presbyterian in New York City.
In Connecticut, Attorney General Blumenthal, is impressed by what he called "the
volume of complaints" he's received from patients and doctors. Blumenthal is
reviewing proposals for the next General Assembly to amend legislation passed in
1999 that requires insurance companies to provide at least 30 days of
intravenous antibiotic therapy and 60 days of oral medications. Blumenthal said
the law needs to be "toughened and tightened to guarantee absolute consistent
and complete coverage" in regard to diagnosis, second opinions and length of
care.
None of these developments, however, will have any bearing on
whether Dr. Charles Ray Jones will continue treating children with
Lyme.
`Devastating" is the word Liegner, the Armonk, N.Y., doctor, used
to describe the possibility of Jones losing his license. "I think there will be
hell to pay if that happens - from his patients. They're not going to take it
lying down."
Jones estimates the defense of his license over the months
of hearings will cost more than $1 million. He is largely letting others solicit
for and supervise his legal defense fund so he can focus on his practice, which
remains all-consuming.
During one stretch in July, he worked 14 days
straight, said Sabra Hughes, his office manager. Seven-day weeks were routine,
though, until Hughes persuaded him to slow down.
Jones's staff has
resorted to trickery to force time off upon him, sometimes putting a phantom
patient into the appointment book at the end of a day. But even when he's not
working he's nearby. A widower since his wife, Margery, died in 1994, he lives
in one of the apartments in the building.
"On Sundays, when most people
are parked in front of their TVs watching football, he's downstairs working on
something having to do with Lyme disease," Hughes said. "We try to get him out
once in a while, feel the sun, but he doesn't believe in vacations. We're
working on that, too."
Efforts to train a successor have so far been
unsuccessful. Still, Jones isn't looking for an exit strategy. Asked how long he
expects to continue, he first joked "about 20 years," then added, "As long as I
can, I will. I enjoy practicing. I can't see sitting around not doing it,
knowing that children would be impaired."
To accommodate two hip
replacements, spinal-fusion surgery and arthritis, he wears dark track suits and
black loafers rather than doctor's whites, disarmingly ambling through his
office with a slight limp and a placid expression.
On this day, Jones is
examining twins he said acquired the Lyme infection through their mother's
breast milk, since he said he believes she was symptomatic when the girls were
born. Jones says he has treated 400 to 500 children who were born with Lyme. The
CDC, however, says it has no reports of Lyme disease transmission from breast
milk.
Hailey and Gilian Raifman, 3-year-old sisters with blond curls and
butterfly barrettes, have made the two-hour ride from Queens, N.Y., with their
mother, Melissa, and an uncle. Because of her history with Lyme, Melissa said
she was concerned about her girls when they began exhibiting neurological and
behavioral problems. "One doctor told us we were chasing after ghosts. He said
that I wanted them to be sick," Melissa said.
The girls see Jones
separately, each sitting on his knee as he asks them questions, before he brings
them to his examining table, where they allow him to gently manipulate their
limbs and joints.
"This is very good," Melissa said as Jones examined
Hailey. "Her pediatrician can't even go near her, she starts screaming and
crying. But she has a lot of trust with Dr. Jones."
Scenes like this are
what motivate Jones's supporters to attend his hearings, contribute to his
defense fund and sing his praises to anyone who'll listen.
"The thought
of him not practicing, and so many kids suffering," said Guilford resident Paula
Capasso, "is unimaginable." She called his circumstances "very, very scary.
What's scarier is we don't have enough doctors that are willing to
treat.
"I don't know what people are going to do."
Gary
Santaniello is an Easton-based free-lance writer. This is his third cover story
for NE.
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