In April, the Pennsylvania House overwhelmingly passed a bill introduced by Rep. Kathy Rapp (R., Warren) to ensure that health insurance covers diagnostics and treatment for Lyme and related tick-borne diseases as prescribed by a health-care provider. That coverage applies whether the treatment plan includes short-term or long-term antibiotic or antimicrobial treatment.
Lyme disease is a bacterial infection transmitted through the bite of an infected tick. If treated early, Lyme can clear up easily, but if undetected or untreated, the disease can spread through the body, affecting even the brain and heart. Longer-term treatment can alleviate symptoms and restore quality of life. The World Health Organization added many new diagnostic codes for progressive Lyme disease, noting dementia, meningitis, arthritis, and many other potential symptoms. The most severe cases of Lyme can be debilitating, and even cause death.
Yet insurance coverage is a major barrier to accessing such medical care for countless Pennsylvanians whose plans do not comprehensively cover their treatment for Lyme.
My son, Sam (age 17), is one Pennsylvanian whose didn’t receive a diagnosis for over a year. He didn’t get well with a few weeks of antibiotics. In fact, he needed a combination of medications to treat the four tick-borne illnesses he contracted, including Lyme. He had suffered seizures, myocarditis, muscle and joint pain, extreme fatigue, hallucinations, ADD/ADHD symptoms, cognitive changes, debilitating headaches and more, and ended up bedridden for a year. Long-term combination antibiotics and antimicrobials, as well as immunotherapies have reversed his nerve damage and other symptoms, and restored memory and processing speed. Thankfully he is back to school part-time and hoping to graduate this year. I can only imagine where he would be without our ability to pay for and access these advanced care options.
To be clear, the bill does not legislate treatment. On the contrary, it enables licensed health-care providers to make individualized treatment decisions based upon their best clinical judgment, without interference from third-party insurers. Given the potential consequences of not treating adequately, we feel that this is a decision best made between the patient and their doctor.
Some health insurance companies have opposed efforts to extend patients’ access to long-term antibiotic treatment. They claim the treatment option of long-term antibiotics beyond two to four weeks is unsafe. Yet evidence clearly demonstrates otherwise. One comprehensive review study concluded that “prolonged antibiotic therapy may be useful and justifiable” for patients with persistent Lyme. Another study compared patients treated short term versus long term after knee joint surgery. Those treated with long-term antibiotics had superior cure rates and very low adverse events, and extending treatment did not increase risk.
Pennsylvania’s patients need treatment options available now. We thank the state House for standing up to the health insurance industry and overwhelmingly passing HB629. Now it’s the Senate’s turn. We encourage the state Senate to follow suit and pass this legislation.
If you or someone you know has or is suffering from Lyme or other tick-borne diseases, we urge you to contact your state lawmakers and share your personal story in support of this legislation.