Lyme Disease: Public Health Controversy
Medical professionals testify at final Lyme Disease Task Force hearing.
By Victoria Ross
Tuesday, April 26, 2011
Chronic Lyme disease is real, pervasive and overwhelmingly under-diagnosed. It is also a public health failure because the accepted medical tests and treatment for the tick-borne illness are flawed.
Several medical professionals delivered that message loud and clear to Gov. Robert McDonnell’s (R) Lyme Disease Task Force at its final hearing Monday, April 25, at the Fairfax County Government Center.
"Even in Fairfax County, you have doctors who say we don’t have chronic Lyme disease here. It’s shocking, actually," said Michael Farris, who heads up the task force. A well-known constitutional lawyer, Farris is the founder of the Home School League Defense Association and Chancellor of Patrick Henry College in Purcellville. He said his wife and seven of his 10 children have been diagnosed with Lyme disease.
"There is too much denial by doctors that chronic Lyme disease exists, and it is dramatically misdiagnosed," Farris said.
Lyme disease is a tick-borne bacterial infection found mostly in the northeastern United States and is considered endemic in the Northern Virginia area. It is usually successfully treated with three to four weeks of antibiotic therapy, according to the National Institutes of Health (NIH) and the Centers for Disease Control (CDC).
The length of antibiotic treatment, and even the term "chronic" Lyme disease, is a controversy among many Lyme disease patients and the medical establishment.
"In patients who have non-specific symptoms after being treated for Lyme disease, and no evidence of active infection, studies have shown that more antibiotic therapy is not helpful and can be dangerous," according to a statement from the National Institute of Allergy and Infectious Diseases, one of 27 institutes and centers of the NIH. The NIH, like the CDC, is part of the U.S. Department of Health and Human Services.
About 50 residents attended Monday’s hearing, which gave the eight-member panel an opportunity to hear medical and health professionals propose recommendations that would be part of the panel’s comprehensive report to the governor.
Jorge R. Arias, Ph.D., an entomologist with the Fairfax County Health Department’s Disease Carrying Insects Program, was the first speaker at the hearing.
Arias said he wanted to let community leaders that their money is well-spent, and that Fairfax County employs a more comprehensive approach than many other areas in the nation, where the focus is solely on how to avoid ticks.
The county’s approach includes tracking human cases, tick surveillance, outreach to health care providers to promote early diagnosis and treatment, deer management and aggressive public education.
"We started our public outreach and education efforts in 2005, and we have a very robust program," Arias said.
In 2007, Arias said the FCHD found that a lack of awareness about Lyme disease existed among Hispanics, so the department took out ads in Spanish-language media outlets, and printed its brochures, including children’s brochures, in Spanish. The FCHD also mailed out 425,000 brochures to households, which provided education and information, and advertising the County’s main information website [www.fairfaxcounty.gov/fightthebite].
"Approximately 250 cases of Lyme disease were reported to the Fairfax County Health Department in 2010," Arias said. "But these cases represent only a portion of the cases of Lyme disease in our community and are used primarily to follow disease trends. We know that many other cases go undiagnosed and/or unreported."
Dr. Robert Bransfield, a psychiatrist who received his medical training 40 years ago at Fairfax Hospital, said he has treated thousands of patients with mental symptoms associated with Lyme and tick-borne diseases. He treated patients for several years in Virginia before opening a practice in Red Bank, N.J.
Bransfield said progress in treating Lyme disease is obstructed by the NIH and CDC for the "narrow, rigid and restrictive disease definitions." He blasted the CDC’s recommended ELISA test for Lyme, calling it highly unreliable and prone to false negatives. No representatives from the NIH or CDC attended the hearing.
According to the CDC’s website, most recommended tests are blood tests that measure antibodies made in response to the infection. These tests may be falsely negative in patients with early disease, but the CDC maintains they are reliable for diagnosing later stages of disease.
The ELISA test, according to the CDC, is designed to be "sensitive, meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended."
"The failures of NIH and CDC to effectively deal with Lyme disease result in missed opportunity to prevent impairment, disability and sometimes death," Bransfield said.
He drew applause when he quoted Dr. Willy Burgdorfer, who discovered the spirochete that causes Lyme and who was featured in the award-winning documentary "Under Our Skin."
"Dr. Burgdorfer said ‘The controversy in Lyme disease research is a shameful affair, and I say this because the whole thing is politically tainted. Money goes to the same people who have for the last 30 years produced the same thing — nothing.’"
Bransfield said the task force should consider launching an Office of the Inspector General (OIG) investigation of NIH and CDC research funding for Lyme disease.
"Our forward progress on this disease has been deterred by the need of individual or groups for power, money or ego. … Other countries follow the lead of American healthcare policies which magnify the consequences of our actions," Bransfield said.
The panel, comprised of doctors, Lyme disease advocates, veterinarians, teachers and other health professionals from around the state, will propose recommendations to the governor in the next week. The task force has been conducting public hearings around the state for the past six months.
Votes:39