Emerging Trends in State Lyme Disease Legislation

May 23, 2019|10:51 a.m.| ASTHO Staff

May is Lyme Disease Awareness Month, an opportunity to recognize those impacted by the disease and increase awareness about one of the most common vector-borne diseases in the United States. Lyme disease, caused by the Borrelia burgdorferi bacterium and transmitted through the bite of an infected tick, has been a nationally notifiable disease since 1991, with health agencies reporting approximately 30,000 Lyme disease cases to CDC each year. Reported cases may only be the tip of the iceberg, however, since additional studies of disease diagnoses estimate that approximately 300,000 cases occur annually.

The recommended treatment regimen for Lyme disease is two to four weeks of antibiotics. However, this depends on a variety of factors such as age and medical history, with approximately ten percent of patients experiencing post-treatment symptoms including fatigue, muscle pain, poor memory, and decreased concentration. Medical costs associated with Lyme disease treatment and post-treatment symptoms can vary from $700 million to over $1 billion annually. Lyme disease is also associated with over 70 percent higher emergency room visits and 87 percent more outpatient visits.

Long-term antibiotic use for Lyme disease has also been studied, with numerous clinical trials examining the potential benefits of such treatment. Results of this research show no benefit to long-term antibiotic use for the treatment of Lyme disease and found long-term antibiotic treatment to be associated with serious complications, including increased antibiotic resistance and healthcare costs.

During the current state legislative sessions, ASTHO identified 109 bills related to Lyme disease. The proposed legislation centered on a number of strategies to address Lyme disease, including educational campaigns, research, testing, and treatment. Testing for Lyme disease and the limitations of these tests, insurance coverage for long-term antibiotic therapy, and physician exemptions for experimental treatment were noted as emerging trends.

Lyme Disease Testing Legislation

The diagnosis of Lyme disease is primarily based on the presence of antibodies during serologic tests. However, limitations, such as the inability to distinguish active or past infection, do exist. Recognizing the challenges associated with Lyme disease testing, the New Hampshire legislature introduced a bill establishing a commission to study the role of clinical diagnosis and the limitations of serological diagnostic tests in determining the presence or absence of Lyme and other tick-borne diseases, as well as appropriate methods for educating physicians and the public about the inconclusive nature of prevailing test methods. The bill passed the house and is currently in the senate.

In March, Virginia’s governor signed a bill requiring every laboratory reporting the results of a Lyme disease test to include, together with the results of the test, a notice stating that the results of the tests may vary and may be inaccurate. The notice must also include a statement that healthcare providers are encouraged to discuss Lyme disease test results with the patient. A Delaware bill, which passed both the senate and house but has yet to be signed into law, would require a healthcare provider to give notice to a patient regarding the limitations of the test for Lyme disease. The notice would also instruct the patient to see their provider if the patient continues to experience unexplained symptoms.

Long-Term Treatment Legislation

Patient advocacy groups and some physicians continue to advocate for physician discretion in prescribing drugs for Lyme disease treatment, despite evidence demonstrating no benefit to long-term antibiotic use. In New York, a set of bills (S426 and A178) would require health insurers to provide coverage for long-term medical care for Lyme disease and other tick-borne related pathogens. Treatment may include intravenous antibiotic therapy and oral antibiotic therapy. Similar bills (S4186 and A2767) would require health insurers to provide long-term medical care for Lyme disease and other tick-borne pathogens, but specifies that such treatment shall include not less than 30 days of intravenous antibiotic therapy, 60 days of oral antibiotic therapy, or both.

The Pennsylvania legislature introduced a bill to require health insurance policies to provide coverage for long-term antibiotic and antimicrobial therapy for a patient with Lyme disease and related tick-borne illnesses. The bill passed the house on April 10 and is currently in the senate. A similar bill (S100) would require every healthcare policy to cover the prescribed treatment for Lyme disease or related tick-borne illnesses. In addition, treatment plans may include short-term or long-term durations of antibiotic or antimicrobial treatments. The bill also states that a healthcare policy shall not deny coverage for longer-term antibiotic treatment otherwise eligible solely because the treatment may be characterized as unproven, experimental, or investigational in nature.

Physician Exemption Legislation

Patient advocacy groups are also calling for protections for healthcare providers who treat Lyme disease, leading to an uptick in legislation requiring health departments or other regulatory agencies to exempt physicians from disciplinary actions for experimental treatments of Lyme disease. The Illinois legislature introduced a bill that would amend the state’s medical practice law by removing provisions prohibiting disciplinary actions against a physician for experimental treatments for Lyme disease or other tick-borne diseases, including prescription or treatment with long-term antibiotics. The exemption from disciplinary actions was added to the law last year when the legislature overrode the Illinois governor’s veto. An Iowa bill, which passed the senate but was later amended by the house, states that a licensee shall not be disciplined based solely on the recommendation of a treatment method for Lyme disease or other tick-borne disease.

State and territorial health agencies can help reduce the burden of Lyme disease and protect the public’s health by strengthening partnerships with a variety of stakeholders to coordinate enhanced Lyme disease surveillance, prevention, and response activities, as well as by supporting effective, evidence-based research and regulations. ASTHO will continue to track legislative activity on this important public health issue.

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