Facing down medical insurance when you suffer from Lyme disease can be a scary and complicated affair. Lyme exists in a gray area of medicine, where it is acknowledged and simultaneously unacknowledged. It is also potentially a chronic condition, which means long-term treatments and numerous consultations for patients. On top of that, the treatment path, already guaranteed to be long and arduous, is not always straightforward. Lyme disease can affect patients differently depending on their constitution. Trying to organize medical insurance on top of this can be an extremely stressful affair. This article will break down everything you need to know about Lyme disease and medical insurance, and hopefully help you to feel a little more reassured.
The first thing to realize is that Lyme disease is essentially two distinct diseases (or it might as well be). The first is acute Lyme, which constitutes the initial symptoms a person presents with upon infection. Lyme disease is transmitted through tick bites; a few hours or days after the offending bite, a patient will usually come down with flu-like symptoms. A distinctive bullseye rash will also be present in most cases, a critical tool in successfully diagnosing the disease. If the acute Lyme case is not treated or noticed, the flu symptoms will subside, and the disease will eventually mutate into chronic Lyme. The chronic form of the disease is unwieldy, hard to diagnose, and tough to quantify. Symptoms usually include muscle aches, joint pain, fatigue, and general malaise, but can also incorporate cardio and neurological issues.
Acute Lyme disease is uncomplicated to both diagnose and treat, if it is recognized in time. The disorder is legitimized in the U.S. and can be covered by medical insurance. Chronic Lyme disease, however, is an entirely different affair. The current stance by both the Centers for Disease Control and Prevention (CDC) and insurance companies is that chronic Lyme disease does not exist. Moreover, their view is that the treatment of chronic Lyme is synonymous with long-term, expensive treatments that largely have little to no effect on the patient’s condition.
While it’s understandable that insurance companies would balk at the idea of continued, costly treatments, ignoring the suffering of hundreds of thousands of patients across the world is reckless. Chronic Lyme treatment is a highly specialized field, by necessity, and treatments are often long processes, as the right balance of antibiotic therapy and inflammation control must be found. As the disease is considered an outlier disorder, it’s no surprise that these treatments are going to be expensive; they have to be, by the nature of the unqualified disease. If the disorder was legitimized, treatments could be widely accepted, reducing the costs and improving the quality. As it stands, many doctors aren’t even considered “Lyme-literate.” The results of this misunderstanding can be found in the thousands of misdiagnosis cases that are left in the wake of chronic Lyme.
The CDC claim that the term “chronic Lyme disease” is used to describe a collection of symptoms with no explained or concrete cause. The insurance companies are merely following the CDC’s lead, and view Lyme-literate doctors and treatments as unproven. They are not obligated to cover these treatments, in line with guidelines issued by the Infectious Diseases Society of America (IDSA), the primary source that insurance companies rely on for their policies. As a consequence, very few Lyme-literate doctors are connected with the major insurance companies. This means that patients have to shoulder the burden of the full treatment cost upfront. If the treatment needs more refinement, or a change of course, then more costs can occur. Over time, these can build up to manageable amounts for most patients. Thus, patients are left with an impossible choice: sink a mass of money into their treatment, or settle for a subpar, most likely ineffective treatment that falls in line with the IDSA and insurance companies.
Yet there is some hope on the horizon. Lyme is becoming more visible around the world, as cases continue to rise. Chronic Lyme is somewhat accepted by the CDC in the form of Post-Treatment Lyme Disease Syndrome, which constitutes prolonged symptoms. While this doesn’t cover the full spectrum of debilitation that chronic Lyme entails, it is at least an acknowledgement that Lyme can exist beyond the acute stage. Also, in 2016, Massachusetts passed a milestone bill calling for mandatory insurance coverage for long-term Lyme treatment. This is rightly seen as a great victory for patients, as it is now an offence for insurance companies in Massachusetts to turn down long-term treatment. Whether this bill will be implemented successfully across the board remains to be seen.
It’s clear that change must be forced through with legislation; medical insurance companies aren’t going to suddenly adopt it themselves on a whim. This is part of the constant struggle with chronic Lyme – the struggle for legitimacy. No concrete changes can come about without a full and detailed acceptance of Lyme disease as a long-term disorder. This will continue to be the critical and decisive topic of contention for the disease, upon which all the other issues, including research, education, and insurance, depend.