Have you ever checked for ticks after going for a hike or walking through tall grass? If so, you’re probably familiar with the risks of Lyme disease – the most common vector-borne illness in the United States. Every year, over 30,000 people in America will contract Lyme disease from tick bites, and the Centers for Disease Control (CDC) estimates that the actual number is probably much higher, around 476,000. So, is Lyme disease covered by health insurance?

The effects of Lyme disease can differ in severity for those who contract it, depending on a variety of factors like age and preexisting conditions. If you’ve received a Lyme disease diagnosis, you might be wondering how it will affect your health insurance and what treatment will be covered by your provider. Read on to find out!

Is Lyme disease a preexisting condition?

Because chronic Lyme disease is not officially recognized by the CDC, it is not considered a preexisting condition by insurers. But under the Affordable Care Act, it is illegal for health insurance companies to discriminate against anyone with preexisting conditions, regardless of what that condition is. A Lyme disease diagnosis, whether short-term or chronic, cannot cause your insurance rates or coverage to change.

How is Lyme disease treated?

Lyme disease is a bacterial illness, and the most commonly prescribed treatment is an oral antibiotic regimen. More severe cases – such as occasions when Lyme is left untreated for too long – might require three to four weeks of treatment, whereas other cases can be resolved in as few as 10 days. According to the Infectious Diseases Society of America (IDSA), most Lyme disease is treated within a few weeks. However, outcomes vary, and many people who contract Lyme find themselves battling symptoms long after the antibiotic regimen has ceased.

The National Institute of Allergy and Infectious Diseases states that long-term symptoms can include “persistent pain, joint and muscle aches, fatigue, impaired cognitive function, or unexplained numbness.” These symptoms exist despite the fact that the antibiotic treatment has finished and no more evidence of an active Lyme infection can be found in serological testing.

Treatment for these chronic cases of Lyme, also known as Post-Treatment Lyme Disease Syndrome (PTLDS), is disputed. Studies on the effectiveness of long-term antibiotic treatment and intravenous antibiotic treatment to cure PTLDS have been inconclusive or have shown that long-term antibiotic use can actually cause adverse effects. The CDC’s official stance is that no proven treatment for PTLDS exists, and often these lingering symptoms are caused by something other than Lyme. Thus, those who continue to struggle with the effects of Lyme long after their treatment has concluded will encounter difficulties when trying to secure treatment and health insurance coverage.

It’s also important to note that Lyme disease is commonly misdiagnosed because the bacteria is difficult to detect using the current blood tests. Fibromyalgia, arthritis, multiple sclerosis, chronic fatigue, and viral infections can all be misdiagnosed as Lyme disease because they exhibit similar symptoms. It’s important to discuss different possibilities with your doctor to ensure that you are receiving the proper treatment for your condition.

 What Lyme disease treatments are covered by health insurance?

The initial two to four week antibiotic treatment for Lyme disease is usually covered by health insurance providers. Unfortunately, because chronic Lyme disease is not officially recognized by the CDC or IDSA, treatment for it is considered “experimental” and therefore not covered by insurers. This runs contrary to the lived experience of many Americans who find themselves needing treatment for ongoing fatigue, chronic pain, and other issues. The International Lyme and Associated Diseases Society advocates for those with chronic Lyme disease and states that there is no conclusive evidence that a 30 day regimen of antibiotics treats Lyme.

Nevertheless, those seeking long-term antibiotic regimens, either orally or intravenously, will have to pay out of pocket costs. Some people may seek out Lyme Literate Medical Doctors (LLMD), physicians who are trained specifically in the diagnosis and treatment of tick-borne diseases, but the majority of these providers are not in-network for any of the major insurance companies. Affording the costs of ongoing Lyme disease treatment can be a financial burden for many Americans. Those who need financial assistance for chronic Lyme might turn to grants from Lyme advocacy foundations or crowdfunding on sites like GoFundMe.

Conclusion

While chronic Lyme disease is not covered by health insurance, there is hope. In recent years, states have introduced legislation that would require insurers to cover antibiotic and antimicrobial treatment for PTLDS. For example, in the 2019-2020 session, New York and Pennsylvania legislators proposed bills that would require health insurers to cover long term medical care for Lyme and other tick-borne illnesses. An Illinois bill proposed prohibiting the Department of Financial and Professional Regulation from disciplining Lyme literate doctors for experimental treatments for Lyme disease. While these laws have yet to be passed, they indicate that awareness of chronic Lyme disease is spreading, and hope is in sight.