Editorial: While the epidemic sprints
● By Richard Gaw
By the early evening of Nov. 12, the elephant in the room at the New Garden Township Building had grown to disproportionate scale.
When the consortium on Lyme disease reached its second hour, the size of the elephant had not dissipated. On the contrary its presence had become not only gargantuan, but one that was so necessary to the conversation. Row after row, those with Lyme disease shared their personal stories with the tell-tale emptying of a confession – farmers, parents, teenagers, weekend gardeners – those who call Chester County home, the very bulls eye on the Lyme disease map of the country where the disease is at its worst. The three medical professionals on the symposium dais – all proven experts in the field of Lyme disease – listened intently to the heartache and helplessness of each speaker. At nearly every turn, they made reference to a 64-page report on Lyme disease authored by a task force on Lyme Disease and other Tick-Born Diseases. And yet, the elephant in the room had already emitted the deafening sound of truth: that while Pennsylvania overwhelmingly leads the nation in the number of Lyme disease detections in each state. According to the Centers for Disease Control, Pennsylvania had 6,470 confirmed cases of Lyme, nearly double the amount of confirmed cases than the state with the second-highest rate of Lyme, Massachusetts. Within those numbers, Chester County has become the epicenter of Lyme disease in the Commonwealth.
Most importantly, the elephant in the room was manifested in the feeling that for every report or task force formed, the aspirations of the medical community are crawling toward solutions, while the epidemic sprints.
At every turn of the report, at every page, its narrative addresses the issue of prevention, education, awareness and surveillance of Lyme disease. While the task force believes these are the critical first steps in slowing the spread of the disease, they are not attacking the key omissions that many in the audience said had accelerated the spread of the disease. Medical physicians are afraid to take on the treatment of the disease, largely because of its complexity and the reams of ignorance the medical community still has about Lyme. Further, there is the reluctance on the part of many insurance companies to recognize Lyme disease as part of their coverage, which leaves Lyme patients scrambling from one medical office to the next, searching for a doctor who provides insurance for treatment.
Perhaps most astounding of all is that there is, to date, no definitive test to determine Lyme. As a dreadful consequence, there is a confusing roster of various forms of diagnosis that often yield different results for different patients, which then lead to potentially harmful cocktails that do more harm than good.
While medical organizations like the Centers for Disease Control and the Chester Public Health System are to be applauded for attempting to galvanize the medical community to fight Lyme disease, even the best plans can take years before they see the light of reality. While the elephant in the room on Nov. 12 pointed to the fact that the medical community is not keeping pace with the disease itself, it introduced one final truth: that while medical health crises in America are fought with research, their breakthroughs are shaped by collective voices. May we recommend that now is the best moment to become that voice. Pound your keyboards. Ask questions and demand answers. Force the medical professionals to approach solutions not from studies and reports, but by the facilitation of active listening.
When the AIDS crisis threatened to wipe out an entire cross-section of the world, activists rose from their grief and castigated a medial community they thought were sitting on their hands, until progress was eventually made.
Blind faith in our medical community is not acceptable, and those who attended the Lyme disease symposium on Nov. 12 gave every indication that they were not about to take this sitting down.
For more information on how you can be a part of that voice, visit The Lyme Disease Association of Southeastern Pennsylvania, Inc., at www.LymePa.org.