Pennsylvania is at the epicenter of the Lyme disease epidemic in the United States – ranking #1 in reported cases year after year. In 2014, Act 83 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) was passed launching a year-long Task Force. The Act 83 Task Force was charged with making recommendations to improve Pennsylvania’s response to this epidemic and close critical gaps in education, prevention and surveillance of Lyme and related tick-borne diseases. The Task Force issued its final report and recommendations to the Pennsylvania Department of Health to address the complicated issues and challenges PA citizens face with Lyme and other tick-borne diseases. In the report, made public on Wednesday, October 14 at a press meeting in Harrisburg, the Task Force carried out the intent of Act 83 to represent the broad spectrum of scientific views that have emerged in Lyme and tick-borne diseases and ensure that patients are properly informed of these views to make informed treatment choices. The Task Force incorporated these views and options into the prevention and education actions for public health officials, medical professionals and patients. The Task Force also called for targeted and significant funding to implement the recommendations to protect the health and quality of life of Pennsylvania citizens.
Act 83 recognizes the diversity of views within the medical and scientific community and charged the Task Force with ensuring that health care practitioners, insurers, and government agencies are educated on the broad spectrum of scientific views and treatment options available for all stages of Lyme and other tick-borne diseases, and that patients are informed of their treatment options to make an informed choice for their health care. The Task Force recognized the two major schools of thought that have emerged to address the treatment of Lyme and other tick-borne diseases—those published by the Infectious Disease Society of America (IDSA) and those published by the International Lyme and Associated Diseases Society (ILADS). Both of these guidelines have been through peer-review and are published on the government’s National Guidelines Clearinghouse for physicians to use as guidance for patient care.
At the press meeting, Secretary Dr. Karen Murphy indicated her first step would be to ask legislators “to allocate and budget funds to help implement Act 83 of 2014 and the recommendations of the Task Force.” Senator Stewart Greenleaf, a primary sponsor of Act 83, started working on this issue 25 years ago, noting the difficulty faced in addressing this given the long-standing medical divide. He stressed how important it is to educate and warn the public and health care professions of the seriousness of these diseases. Senator Andy Dinniman stated that “these recommendations need to happen and should not end up on a shelf getting dusty.” He noted that chronic Lyme and co-infections are serious problems, and that current tests are not accurate.
The 20 members of the Task Force represented an array of stakeholders from state agencies and professionals in various health and research fields, as well as patient groups. PA Lyme Resource Network’s President, Julia Wagner, chair of LymeActionPA and resident of Montgomery County, served on the Task Force representing Lyme disease patients and their experiences. “These recommendations are a critical starting point in addressing this epidemic – physicians will be caught up to date with the science and required to inform patients of the multiple schools of thought and treatment options that are available if the disease persists and progresses. Options are what patients need,” stressed Wagner. “There is so much more to do to with regards to this disease and the devastating effects it can have on lives, especially children. Having prevention, education and surveillance measures is a start, but without an ongoing effort against this epidemic, Pennsylvanians, young and old, will continue to be at risk.”
For patients with tick-borne illnesses, these actions are long-awaited. Studies have shown that 20-40% of patients continue to have symptoms and disease progression after short-term treatment. Having options, based on developing science, will be crucial to changing these patient outcomes. And, prevention actions that work will go a long way toward preventing tick bites, and diagnosing disease earlier so it can be treated early and aggressively, when it is most likely to be cured. Because there is no gold-standard test for Lyme disease, commonly used tests can miss as much as 50% of actual cases. Lyme disease evades the immune response, making it very difficult to diagnose. As a result of this key issue, patients experience significant delays in diagnosis, bouncing from doctor to doctor, have limited treatment options, and experience poor health outcomes. Science has evolved rapidly in the last 10 years, as new technologies emerged, and it is now quite clear that tick-borne diseases are a serious threat to the health and quality of life of Pennsylvanians, and can affect virtually every system of the body, including the heart and nervous system.
In 2013, the Center for Disease Control (CDC) significantly modified prior estimates of Lyme disease, reporting 300,000 new cases annually, significantly more than the 30,000 previously reported. For Pennsylvania this means more than 70,000 new cases were reported for 2014. High risk groups for Lyme disease include children, adults over 50, and the elderly. Prevention actions are recommended in the Task Force’s report – including actions by schools to prevent schoolchildren from being exposed to ticks through the course of school activities, as well as awareness programs to educate the public on prevention actions that work.
The path to Act 83 included a 20+ year effort on behalf of Senator Greenleaf and others. In June 2014, the Lyme bill passed and was signed into law by Governor Corbett. PA Lyme Resource Network, comprised of patient support groups from across the state, was heavily involved in communication with senators and representatives to generate support for the bill. “While Pennsylvania has reported the most cases of Lyme in the nation for years, there has been no state-level surveillance of ticks, prevention or an awareness program,” indicates Wagner. After
eight years of rallying behind this bill, Wagner is thrilled to see action being taken to protect Pennsylvania citizens from the array of tick-borne infections that have been occurring across the state for years, and for patients to finally have options if their disease is persistent, and fails short-term treatments. “Too many Pennsylvanians have suffered the consequences of Lyme and tick-borne disease, and without action, thousands more remain at risk,” Wagner continued. “This important public health challenge affects all Pennsylvanians – every county has reported ticks infected with the bacteria associated with Lyme and other tick-borne disease. And yet, our children, our elderly, and our immune-compromised are most at risk and most vulnerable to their impact. Our actions now, will significantly impact Pennsylvania youth’s risk and future potential.”
Lyme disease is transmitted by the black-legged tick; however, scientists have discovered that Lyme is not the only disease you can get from a tick, citing multiple pathogens that can infect humans, including Babesiosis, which has a 10-20% fatality rate, Anaplasmosis, Rocky Mountain Spotted Fever, Bartonellosis, Ehrlichiosis, and many more. In rapidly emerging diseases like this, the health care response is often delayed as physicians and practices catch up. In emerging diseases, the Institute of Medicine notes that it is critical that multiple options are available to physicians and patients.