Medical leaders draw criticism at Lyme disease symposium
By Richard Gaw
By Richard L. Gaw, Staff Writer
In the battle between Lyme disease and the medical field who is attempting to come up with a unified method of proper diagnosis and treatment, the disease - now generally thought of as an epidemic in southern Chester County -- seems to be winning.
At last Thursday's Lyme Disease presentation, one that gathered three medical health professionals to the New Garden Township Building, the bad news severely overshadowed the good, and if there was an elephant in the room, it appeared in the form of a telling statistic, one that has changed the lives of many of the more than 100 citizens who attended the event.
For close to two hours, those in the audience, many of whom told the health professionals that they are living with Lyme disease, joined State Sen. Andrew Dinniman in excoriating the medical field for what they deemed was a complete lack of urgency to address the "epidemic" that the disease has become in the Commonwealth.
The numbers are staggering: Over the last three decades, Pennsylvania has led the nation in the number of residents who have been affected with Lyme and other tick-borne diseases, with an estimated 50,000 to 70,000 affected each year. To give the severity of the disease a local flavor, Chester County has become, in effect, the epicenter of Lyme Disease in the Commonwealth. From 2008 to 2010, there were 2,357 Lyme cases in the county, or 158 per 100,000 residents. In 2014, the county recorded 173 confirmed cases of Lyme disease.
The good news is this: Act 83 of 2014 established a Task Force on Lyme Disease and Related Tick-Borne Diseases. The individuals appointed to the task force culminated their year-long effort with the delivery of the Task Force Report to the Secretary of Health, finalized this September. Dinniman, along with Sen. Stewart Greenleaf, helped to create the Lyme Disease Task Force related to prevention, diagnosis and treatment of the disease.
The 64-page report spelled out a comprehensive set of 18 recommendations to improve Lyme disease prevention, education, awareness and surveillance which the task force believes are the critical first steps of slowing --- and possibly reducing – the growing incidence of Lyme and other tick-borne diseases in the Commonwealth.
The Nov. 12 meeting in New Garden served as the first public meeting to discuss the findings of the report.
The symposium, sponsored by Dinniman, included Dr. Rachel Levine, M.D., Pennsylvania's Physician General; Kimberly Stone, M.D., of the Chester County Public Health System; Marina Makous, M.D., of the Lyme & Tickborne Disease Research Center at Columbia University; Don Hannum, director of the Chester County Farm Bureau; and Doug Fearn, chairman of the Lyme Association of Southeastern Pennsylvania, Inc.
Levine said that the report serves as a blueprint to help guide future planning for education, prevention and surveillance of Lyme disease across the Commonwealth, and the first effort to address the health problem. She said that in the report, the task force recommended protocol and funding strategies for high-risk areas, particularly schools and state parks for park staff and visitors. She said that the task force also recommended the development of a standardized brochure for physicians to consult in order to best treat their patients who have Lyme disease. In terms of of education and awareness, the task force recognized that many of Lyme diagnosis go unrecognized; that physicians' practice varies; and that there are delayed on diagnosis and treatment, leaving many outcomes "less than satisfactory."
The task force also recommended the start of a statewide public awareness campaign called "Don't Let A Tick May You Sick," as well as increased prevention efforts, finding new strategies for diagnosis, creating an advisory body and obtaining a cost analysis of implementing these ideas.
Although she said that while these recommendations are not being not happening all at once, Levine said, "we we will take these steps to try to help curb the incidence of Lyme disease in Pennsylvania, with the goal of assuring that hopefully the Commonwealth will not be leading the country in the incidence of this disease."
Stone said that while the county health department is also focusing its efforts on education and awareness, she said that the department still needs to make improvements on creating standardized forms of diagnosis for physicians – to better identify the appearance of Lyme – as well as giving them the tools to better help them determine diagnoses and recording, through a fundamental form of testing.
The bad news? Those in attendance at the event felt that despite these efforts, the medical community is adapting a kick-the-can-down-the-road approach to the disease, at a time when the needs of the escalating number of those who are suffering from the disease are urgent.
They key culprit? It's the growing number of physicians who don't want to handle Lyme disease patient cases, and the insurance companies who are reluctant to welcome it into the fold of their coverage.
Fearn said that because misinformation about Lyme disease exists, "the impact on patients can be really profound."
"It's unfortunate that in this highly epidemic area, that there are very few physicians who are treating it, and that problem arises for a variety of reasons," he said. "Unfortunately, doctors are afraid to get involved in this complicated disease. Research is very controversial, and there are two highly-divergent schools of thought in how to diagnose it and how to treat it, so a lot of doctors don't want to get in the middle of that. It's dangerous to their livelihood. As a consequence, they don;t treat people.
"Many of the doctors who are treating Lyme patients have found that they can not participate in health insurance with their patients, and that comes because Lyme patients require more than ten or 15 minutes with doctors, much more than most insurance companies will allow, and insurance companies generally won;t cover treatment with antibiotics. It's a sad state of affairs throughout the country, particularly here, that patients have to have some independent financial situation that allows them to be properly treated. The majority of people are not in that [financial] position. Consequently, we know people who deplete their life savings and deplete their retirement funds and have to sell their houses, and they have lost their income because they are too sick to work. We know people who are homeless, and these are productive people in society, and now they're homeless, because of this disease."
Fearn called for the legal protection of physicians who treat Lyme disease, against the complaints issued by insurance companies, who bring charges against the physicians related to their treatment of Lyme.
In many ways, Lyme disease is an illness with two faces: the medical statement, backed by the U.S. Centers for Disease Control [CDC], who serves as the global epicenter of knowledge of the disease, and the statement of those afflicted with Lyme. The disease is now an epidemic, Dinniman said, but one that is being met by a medical community that seems content with attacking the disease through an arbitrary series of tests and treatment procedures. To date, there is no gold standard diagnostic test for Lyme disease.
"Some people who get Lyme know so, because of the bulls eye [marking on the skin], but that's not always the case," Dinniman said. "We often find people who are not treated develop chronic Lyme, which has so many implications, in terms of neurology and psychiatric disturbances, in terms of simply feeling like there's nothing to live for. And yet we know that when people sometimes go to doctors and ask for assistance, the doctors will tell the patient that there really is no chronic Lyme, or that it's something else. We're on the cusp of understanding tick-based diseases, but even our knowledge of the variety of these diseases is limited."
Several attendees in the audience, many of whom have been diagnosed with Lyme disease, expressed their frustration with their treatment, echoing many of the roadblocks expressed by those on the panel. Most prominent among their complaints was their inability to find answers -- expressed in the form of their having to play a game of medical treasure hunt, in the hopes of finding a physician who will help them.
The problem was best illustrated by one attendee, who said that he has seen as many as 28 different physicians. When one resident of East Marlborough asked the panel what they would recommend to Lyme patients who seek treatment, two of the medical community panelists said that patients should "find a physician that you trust and believe in."
"You say you want an educated consumer, but the trouble with that is, none of us can be the educated consumer if we don't know enough," Dinniman responded. "The question remains is, 'What do I do?' If I have cancer, I know who the specialist is. I have a cadre of people who are going to lead me through this. But with Lyme, who do I go to?' How do my constituents know what questions to ask? Do we print a booklet or something?
"To not say anything is not the response, so what's happening now is that the people of this district, of this county, are saying that the number one medical situation is Lyme disease," Dinniman added. "It goes on year after year. Some of us can't even get out of bed in the morning. We're in the epicenter of all of this, and all the government will say to us is, 'Trust your physician.' Well, which one?"
Following comments from additional audience members, Dinniman addressed the medical community.
"What you are experiencing here is a moment of change in public health when it comes to this disease," he said. "You have a population that's in revolt. They are no longer accepting the answers from our public health officials because they haven't been sufficient for two decades. They're no longer accepting the fact that people are going to lay in their beds, helpless, day after day. They are no longer going to accept the fact that they don't even have a place to call to get a sense of direction. Those of you who are in public health, what it is, to be quite blunt, is that public health has failed this population."
Despite his comments, Dinniman said that he was optimistic that the task force he helped form will eventually solve the problem of Lyme disease, not only in Chester County, but in the entire Commonwealth. he encouraged those in the audience to organize their protests, in order to accelerate change in how Lyme disease is being addressed.
For more information on Lyme Disease in Chester County, visit The Lyme Disease Association of Southeastern Pennsylvania, Inc.'s website, at www.LymePA.org.
To contact Staff Writer Richard L. Gaw, e-mail firstname.lastname@example.org .