June, 2007

Proposed redefining of Lyme disease sparks Atlantic City protest
Published: Wednesday, June 27, 2007

Children and adult Lyme Rights protesters walk the grounds of the Atlantic City Train Station Wednesday, June 27, across from the Sheraton Hotel in Atlantic City protesting the Council of State and Territorial Epidemiologists conference for recommending tougher criteria for diagnosing Lyme Disease. (Press of Atlantic City/Anthony Smedile)

UPDATE: 4:55 p.m. -

Members of the Lyme Rights advocacy group picketed Wednesday outside the Council of State and Territorial Epidemiologists, or CSTE, conference at the Convention Center in Atlantic City. The protest follows a proposed revision to the rules surrounding the diagnosis of the disease. Lyme Rights members fear that the amendment would make it more difficult for doctors to diagnose Lyme disease. CSTE officials say these concerns are unfounded.

Tom Dunford, for The Press

Full story below.

http://www.pressofatlanticcity.com/news/local/atlantic_city/story/7488170p-7383401c.html

Atlantic City Lyme conference draws pickets

By THOMAS DUNFORD For The Press, (609) 272-7147

Published: Thursday, June 28, 2007ATLANTIC CITY — Pickets gathered outside the city's Convention Center on Wednesday to protest a new procedure for Lyme disease detection they say would make it more difficult for doctors to diagnose the disease.

Dressed in bright green T-shirts with fake “bull's eye” rashes painted on their arms, about a dozen protesters from the Lyme Rights advocacy group handed out leaflets decrying a recently re-leased draft of the “Revised National Surveillance Case Definition for Lyme Disease.”

The new definition is proposed by the Council of State and Territorial Epidemiologists, or CSTE, which is holding a conference at the convention
center. The CSTE advises the Centers for Disease Control and Prevention.

“If this goes through, these patient won't be able to get diagnosed and they won't be able to get treated as a result,” said Patricia Smith, president of the National Lyme Disease Association and member of the CSTE. She protested with Lyme Rights.

Under the new definition, doctors in states where Lyme disease has not been classified as an endemic would be required to provide additional information, such as a positive laboratory test, before confirming a case of Lyme disease. Currently, an erythema migrans, or “bull's eye” rash, is all the evidence a doctor needs to diagnose the disease.

To classify a state as having a Lyme disease endemic, doctors must prove that at least two people have contracted the disease. In 2005, there were no confirmed cases in Oklahoma, Arkansas, Mississippi, Hawaii, Colorado and Montana.

“The rash has always been good enough for them. And now, with no good science to back it up, they're going and changing that,” said Ellen Lubarsky, of New York. Lubarsky says she contracted Lyme disease 17 years ago but that it took 15 years for it to be diagnosed properly.

Patrick McConnon, executive director of the CSTE, said he did not see what there was to protest.

“I don't think it will make it more difficult for patients to get diagnosed,” McConnon said. “What we think this will do is give us more refined tools for disease surveillance. We believe the most accurate information, the most precise information, will help us deal with policymakers on the state and national level. Our motivation and our interest is to do our job with the best information.”

But Lyme Rights members questioned the precision of current laboratory tests.

“The tests they have aren't good enough. They're only 40 to 60 percent accurate at best. And now, patients will be at their mercy before they can get treatment,” Smith said.

The protesters said they were also concerned that stricter criteria for Lyme disease detection could result in a drop in apparent case numbers, which likely would lead to reduced funding for Lyme disease research.

“The government spent $33 million on Lyme disease research last year. They spent $78 million on West Nile. Meanwhile, there were eight times more reported Lyme disease cases than West Nile. There's a huge disparity there,” Smith said.

“It's easy to understand the concern of these people,” McConnon said. “This is an emotional issue. This is not just about statistics. But we believe that to overcount, to count without the precision of diagnostic data, would not be to anyone's advantage.”

Lyme disease is spread by the bite of infected ticks and can attack the joints, the heart and the nervous system, causing crippling pain. Other symptoms include fever, headache and fatigue.

“I was bedridden for about five years,” said Kim Uffleman, a motel owner and radiology technician from Wildwood Crest. “I remember one day I looked at the shoes in my closet and I nearly cried because I couldn't tell where they came from. I couldn't remember whether I bought them or where I got them from. I was only 30 years old.”

Several children joined their parents in protesting.

“I have three sons. I just want my boys to be healthy,” Uffleman said as she looked at some of the children holding pickets. “And now this group wants to make that harder. I think it's criminal, what they're doing.”

The protest lasted five hours, from 12:30 p.m. to 5:30 p.m. CSTE conference events are scheduled to continue today from 8 a.m. to noon, during which members will vote on whether or not to endorse the case definition for future submission to the Centers for Disease Control and Prevention.

To e-mail Thomas Dunford at The Press:

TDunford@pressofac.com