You’re sick. You’re tired. Your body aches. You’ve spent months or years going from doctor to doctor, many of whom insist your symptoms are psychosomatic, or minimize them by calling it stress. Perhaps you’ve been tested for Lyme disease, and were told the results were negative. Finally, you see a Lyme Literate Medical Doctor (LLMD) who runs specialized tests and discovers that you do in fact have Lyme. You might have several co-infections as well.
The LLMD explains that standard Lyme disease tests are less than 50% accurate, because they only test for antibodies against the bacteria, not the bacteria itself. They also tell you that due to that fact, the Centers for Disease Control and Prevention (CDC) positive test requires five proteins found on the Lyme bacteria, called “bands.” Per this diagnostic standard, patients with two, three, or even four positive bands are often deemed Lyme-negative by physicians unfamiliar with the disease.
However, an LLMD is familiar, and based on your test results and a clinical evaluation, they diagnose you with tick-borne illness and start you on a protocol. Finally, you have an answer. Finally, you start to feel a little better. Finally, you have hope.
And then your insurance claim returns to you with a big REJECTED stamp.
Why Your Claims Are Rejected
In their book Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment, Denise Lang and Kenneth Liegner, M.D. have an entire chapter entitled, “What’s Insurance For?”[i] Almost twenty years after the third edition of that book was published, many Lyme patients are still asking the same question.
Insurance is ostensibly supposed to cover healthcare costs after you or your employer pay a certain premium. While types of plans and their coverage vary, in general, you purchase insurance so that you aren’t bankrupted when disaster strikes.
When that disaster is Lyme disease, however, there is little recourse: some insurance companies deny coverage of antibiotic treatment beyond the “standard” 10-14 day protocol, as they must predicate coverage on the CDC definition. While the CDC continues to update this definition in step with new data and research, for decades many patients who fell short of their criteria were denied coverage, regardless of an LLMD’s clinical diagnosis.
If you present five positive bands, your insurance company then approves coverage based on existing treatment guidelines. There are two distinct treatment guidelines for Lyme disease: those defined by the Infectious Diseases Society of America (IDSA) and those by the International Lyme and Associated Diseases Society (ILADS). The IDSA is in compliance with the CDC, stipulating 10-14 days of antibiotics for most cases of Lyme disease, with slightly longer courses (up to 28 days) allowed for later-stage conditions. Any symptoms persisting beyond that treatment, no matter the duration of infection or presence of coinfections, are categorically termed “Post Treatment Lyme Disease” or “Post Treatment Lyme Disease Syndrome” (PTLD or PTLDS), for which continued antibiotic treatment is not recommended by IDSA.
Meanwhile, ILADS recommendations take into account the various factors that can complicate tick-borne illness treatment, as well as clinical judgement in the absence of irrefutable diagnostic testing. ILADS recommends no less than 20 days of antibiotic treatment for any case of Lyme, and suggests that symptoms persisting beyond that are indicative of an ongoing infection that should continue to be treated at the physician’s discretion.
Many late-stage, long-term, or chronic Lyme patients, i.e. cases persisting beyond two-to-four weeks, rely on the ILADS treatment. But in line with the CDC, insurance companies defer to the IDSA, so coverage of that treatment may be denied.
It’s Not Just Lyme
Lyme disease is not the only instance in which patients struggle with insurance coverage. A June 29, 2021 CBS News special “Medical Price Roulette” interviewed COVID-19 long-haulers who lost their jobs and their insurance coverage, and now face mounting medical bills. Others also described difficulty getting disability payments from the insurance plans provided by their employers. In the broadcast, patient Candace Taylor says, “It has been a tug-of-war with the insurance company.”[ii] She works at a hospital that provides disability insurance, but even though she was diagnosed with post-COVID syndrome, the insurance company disputed her claim. Like many Lyme patients before her, Taylor’s illness did not qualify claim standards.
Comparable to Lyme disease, the medical consensus around COVID-19 is nebulous and frequently changing. Novel illnesses and experimental therapies present a difficult challenge, as the demand for coverage is outpacing the research requisite to insuring new modalities.
There is Hope
A cursory search of Lyme disease on the CDC website instills hope. A glossary on Lyme disease can be found, with many painstaking details about Lyme that patients have come to learn for themselves. As a torrent of modern research continues to recalibrate the scientific consensus and peel away at the antiquated status quo about Lyme treatment and guidelines, the CDC is beginning to reflect these findings. We hope there is a future where, in return, insurance companies modify their policies accordingly, and adequate Lyme treatment is covered.
Despite denied claims, legislators have made strides to help patients get treatment and corresponding coverage. Beginning in 2009, the state of Connecticut passed a law allowing physicians to prescribe long-term antibiotics for Lyme patients, without fear of repercussion. New Hampshire and Massachusetts have similar laws, and in 2016, Massachusetts legislature passed a law mandating insurance companies cover long-term treatment for Lyme disease. Illinois passed a law with the same mandate in 2019. Other states, including New York and Pennsylvania, have passed or are pending laws regarding long-term treatment and coverage.
Some states have attempted to pass such laws without success, but patient advocacy groups continue to make headway.
What to Do if Your Claim is Denied
In Emergence, the sequel to Under Our Skin, Jordan Fisher Smith says, “The greatest problem I see Lyme people having is that they’re… going to have to fight for yourself while feeling awful.” In other words, if battling Lyme weren’t enough, the individual patient must also contend with justifying coverage as well.
Luckily, help is available. If you are a Lyme patient whose Lyme disease treatment has been denied by insurance, or if you are a caretaker of one of these patients, here are some steps you can take and resources you check out:
- Appeal, appeal, appeal: When initial claims are denied, as they often are, making the extra effort to appeal can make all the difference. And Lyme patients may very well feel too tired to do so. This is where caretakers and friends can help- by writing letters and filling out forms. Most insurance companies list their appeal process either on the back of your claim or on their website. If you’re denied again, appeal again.
- Contact your state’s insurance commission: If your insurance claims are continually denied, your state’s insurance commission may be able to assist you.
- Contact pharmaceutical companies directly: Some pharmaceutical companies have programs that will help cover costs of expensive medications when patients meet certain financial criteria and insurance won’t cover the treatment. Ask your pharmacist which company makes your medication, and then check that company’s website for financial assistance programs (these are often in fine print, so look carefully!).
- Contact state policy makers: If your state does not yet mandate long-term treatment coverage, contact your lawmakers to encourage them to do so. You could also look up patient advocacy groups in your state that might already be working on the cause.
- Check out GLA’s Financial Resources page: Here you will find links to groups and organizations that assist with medical billing, financial grants, and health insurance counseling services.
Until there is a more accurate diagnostic test, and more expansive treatment guidelines, many Lyme patients must fight an uphill battle to entreat their insurance companies. New laws, resources, and research give more and more patients hope and relief every day. So don’t give up, keep fighting!
[i] Lang, Denise with Liegner, Kenneth, M.D. Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment, Third Edition. New York: Henry Holt and Company, 2004.
The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history.