NEW GARDEN (November 18) – State Senator Andy Dinniman was recently joined by Pennsylvania Physician General Dr. Rachel Levine, local health officials and Lyme disease advocates for a panel discussion on the Pennsylvania Department of Health’s recently released Lyme Disease Task Force Report.

More than 50 residents attended the event, which was held on Thursday, November 12 at the New Garden Township Building.

DinnimanLyme

Pictured (from left to right) Senator Dinniman, Pennsylvania Physician General Dr. Rachel Levine and Chester County Public Health Physician Dr. Kimberly Stone.

The Lyme Disease Task Force Report, which was released in October, marks the first-ever comprehensive report on Lyme disease in Pennsylvania. It was produced by the Pennsylvania Health Department’s Task Force on Lyme and Related Tick-Borne Disease, established by Act 83 of 2014.

“A significant amount of time, energy and research went into this report and we are committed to ensuring that this report does not collect dust on a shelf in Harrisburg,” Dinniman, who co-sponsored Act 83 and serves on the Senate Public Health and Welfare Committee, said. “Our goal is to use this report to help steer legislative action and positive change in preventing and effectively treating Lyme disease. This discussion is one of the initial steps in that ongoing effort.”

Dinniman said he organized the event to continue the public dialogue on Lyme disease and thoroughly examine the report’s recommendations for strengths, as well as areas that need improvement or clarification.

“We are simply on the cusp of understanding the variety of tick-borne disease and how they affect the human system,” he said. “And the number of people who have Lyme in this county is staggering.”

Much of the discussion centered on the need for more research, better testing and increased access to treatment. Residents and panelists also discussed how to help raise awareness of the dangers of Lyme, and to encourage the medical community and larger community to examine a variety of approaches to treating long-term or chronic Lyme disease.

Doug Fearn, Chairman of the Lyme Disease Association of Southeastern Pennsylvania, described the difficulty Lyme patents face in finding effective treatment and how some have depleted their entire savings while trying to get healthy.

“Doctors are scared to get involved with this disease because the research is so controversial,” he said. “It is a sad state of affairs when throughout the country and our region patients have to have some independent financial situation to be properly treated.”

He said Lyme patients have lost jobs and been left financially, destitute, homeless and bankrupt by the disease.

Dr. Marina Makous, who operates a private practice in Chester County specializing in Lyme and neuropsychiatric complications, said there was no “one size fits all approach” when it comes to Lyme.

IMG_2911“I can definitely attest to the devastation Lyme causes in patients,” Dr. Makous, a member of the Research Team of Columbia University’s Lyme and Tickborne Diseases Research Center, said. “I have seen lives wrecked by it. It affects people differently. There is an interplay of different types of bacteria, and an interplay of personal genetics.”

Dr. Levine agreed that doctors need a better test that they can trust in diagnosing Lyme.

“A ‘gold standard’ test could lead to earlier diagnosis, earlier treatment and better outcomes,” she said.

Panelists and those in attendance also heard a brief presentation from Dr. Gregory Bach, who served on the Lyme Disease Task Force and has treated thousands of Lyme patients.

Lyme disease is transmitted by deer tick bites. The early clinical diagnosis and appropriate treatment of Lyme and other tick-borne diseases can greatly reduce their risks. Left untreated, Lyme can cause a number of symptoms that can become quite severe and affect every system and organ in the body.

The most recent statewide data show the reported cases of Lyme disease on the rise in most counties in the state and the presence of the Lyme disease-carrying black-legged, or deer tick in all 67 counties. For the past five years Pennsylvania has led the nation in reported Lyme disease cases.

Dr. Levine noted that “the CDC believes we are underreporting Lyme manyfold because many cases are not reported and many are not diagnosed.”

Fearn said that some studies have shown that current tests for Lyme are only 20 to 30 percent accurate.

“The technology that works well in testing for other diseases just doesn’t apply when it comes to Lyme,” he added.

Dinniman said that during his time as first a Chester County Commissioner and now a state Senator, he has connected with numerous individuals and families who have suffered the devastating effects of chronic Lyme only to find effective treatment through alternative therapies and/or long-term antibiotics.

“We are reaching a turning point in the public understanding of the dangers and treatment of Lyme disease and now we must work together to ensure that our lawmakers and the medical establishment implement policies that are effective in helping patients,” he said. “It appears that we need to balance and thoroughly review the variety of current and potential treatment and diagnostic options for Lyme that are available.”

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