Why Is Lyme Disease Not Covered by Insurance?

by Daniel Lynch, Founder & President, Medical Bill Gurus

This week, we have a guest post from Daniel Lynch. Daniel Lynch is the founder of Medical Bill Gurus, a patient and physician advocacy company that specializes in navigating the complex issues associated with healthcare and medical bills. His mission, he explains is to “utilize our wealth of information to ‘pay it forward’ to those who need assistance! … Although most claims for Lyme disease are typically at cash-only medical providers and not covered by insurance companies, we at Medical Bill Gurus have put together a process of breaking down bills, and identifying components of treatment that are covered by PPO insurance plans.”

Here he shares his perspective and some tips. Bay Area Lyme Foundation has no connection with Medical Bill Gurus and this post is not an endorsement of their services. At Bay Area Lyme, we are committed to supporting the community by ensuring access to information and resources to help them deal with Lyme disease.

Why Is Lyme Disease Not Covered by Insurance?

“As the tick season begins to wind down, thousands of families will begin to experience the impacts of forgotten tick bites received during the summer months, and begin a journey of education and acceptance.

“Unaware of the potential complications and financial resources required, thousands of families will begin to visit dozens of doctors that will span over the course of years and potentially decades to pursue “alternative treatment” that is often stigmatized by the medical community and not covered by insurance companies.

“According to the Centers for Disease Control and Prevention (CDC), Lyme Disease is the fastest growing vector-borne, infectious disease in the United States, overtaking Zika virus and West Nile virus, with the number of cases reportedly increasing annually nearly 25-fold since reporting began in 1982.

“The Centers for Disease Control and Prevention (CDC) estimates that there are currently 300,000 new cases of Lyme Disease each year, but also states there are no accurate tests to quantify the number of new cases, which could well be in the millions.

“A tick bite and bullseye rash are the two most common physical markers for an infection of the spirochete (spiral shaped) bacteria known as bacterium Borrelia burgdorferi, which is transmitted to humans through the bite of infected blacklegged (deer) ticks.

“However, a recent polling evaluating the effectiveness of Lyme disease diagnoses found that 50% of “diagnosed” Lyme disease patients did not recall a tick bite, and that less than 50% recalled receiving the characteristic ‘bulls eye’ rash.

“The main reason Lyme disease is difficult to detect is because the symptoms can be obscure. Due to the obscure symptoms associated with Lyme, the disease is often referred to as the “Great Imitator” as it commonly imitates the symptoms of other illnesses. Lyme disease is often misdiagnosed as numerous conditions and diseases, including but not limited to: Autism, Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s, Crohn’s Disease, Chronic fatigue syndrome, Fibromyalgia, Irritable Bowel Syndrome (IBS), Lupus, Parkinson’s, Prostatitis, or Multiple Sclerosis (MS), just name to a few.

“In a Statement for the House Foreign Affairs Committee from 2012, the Infectious Diseases Society of America (IDSA) stated the following: ‘IDSA recognizes that Lyme disease can be painful and that the disease is not always properly identified or treated’ and later goes to say ‘We sympathize with these patients’ suffering, but remain concerned that a diagnosis of so-called “chronic Lyme disease,” suggesting that active infection is ongoing, is not supported by scientific evidence and, more alarmingly, the treatment of long-term antibiotic therapy will do patients more harm than good.’

The Infectious Diseases Society of America (IDSA) also goes on to state that a majority of Lyme disease cases are ‘successfully treated with 10-28 days of antibiotics,’ and that ‘long term antibiotics have not been found to effectively treat symptoms that persist after the initial infection is cleared.’ Per the Infectious Disease Society of America (IDSA) guidelines, a single dose of doxycycline is recommended after potential exposure to the bacterium Borrelia burgdorferi microbes via a tick bite.

“On the other hand, if you were to speak with actual Lyme disease patients or those in the trenches fighting this vector-borne epidemic, most familiar with the disease would say that depending on the duration and severity of the infection, antibiotics will help but most likely not knock the bacteria or debilitating symptoms into remission.

The International Lyme And Associated Diseases Society (ILADS) is a medical society dedicated to the appropriate diagnosis and treatment of Lyme disease and associated disease.

“Contrary to the guidelines published by the Infectious Disease Society of America (IDSA), ILADS states that ‘there has never been a study demonstrating that 30 days of an antibiotic treatment cures chronic Lyme disease. However, there is much documentation demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.’

“In the desire to receive answers and acquire an official diagnosis, the average Lyme disease patient will see five or more doctors over the span of two years, spending significant amounts of money and potentially losing the ability to hold down a full-time job with health insurance benefits.

“The current stance by the Centers for Disease Control (CDC) and private insurance companies is that “Chronic Lyme Disease” does not exist, and is associated with costly experimental and expensive treatments.

“Stating that “chronic Lyme disease” is a diagnosis used by medical providers to describe patients with a variety of unexplained symptoms, the Centers for Disease Control (CDC) and insurance companies see any treatment from “Lyme Literate” Medical Doctors (LLMDs) as practitioners of unproven treatments, particularly the use of long-term antibiotic therapy.

“As insurance companies rely on policy and guidelines in making coverage decisions, insurance companies are not obligated to cover the treatment of Lyme disease per the guidelines issued by the Infectious Diseases Society of America (IDSA), which insurance companies rely on to systematically deny claims associated with the treatment of Lyme disease. Consequently, a majority of all “Lyme Literate” Medical Doctors (LLMDs) are not in-network with any of the major insurance companies, resulting in patients being obligated to pay for all Lyme disease treatment upfront, requiring significant amounts of financial resources.

“Unfortunately, if an individual gets seriously ill in the United States and does not have applicable insurance benefits, there is not much of a safety net, requiring most families to make difficult financial decisions in order to receive treatment historically not covered by health insurance. At Medical Bill Gurus, we have been helping patients who have received “Alternative/Integrative” care at cash only medical providers for over twenty-years. Serving as a patient advocacy and medical billing service, Medical Bill Gurus assists individuals of all backgrounds, diagnoses, and incomes in navigating the financial complications associated with the rising cost of healthcare and dwindling network of coverage provided by insurance companies.

“In the past, a majority of the individuals we helped were cancer patients, but over the last decade, we have seen an exponential increase in the number of Lyme disease patients seeking our assistance with their medical bills at historically cash only alternative and holistic medical providers.

“Although much of the treatment is alternative in nature for Lyme Disease, Medical Bill Gurus can identify and bill for the ancillary services (doctor consults, treatment room, medical supplies, lab test and admin of the treatment), which can make up a substantial amount of the bill. Though Medical Bill Gurus cannot bill for 100% of the total treatment cost, we may be able to identify and bill for 40-60% of the bill, depending on the treatment protocol and specifics outlined in the patient’s insurance policy’s Explanation of Benefits (EOB).

“In regards to the billing components, Medical Bill Gurus helps patients identify what components of their care are billable per the Out of Network Coverage outlined in their insurance policy’s Explanation of Benefits (EOB) and bill for those items only.

“Every insurance company is different so we have had more success with some than with others. Most of the patients we have assisted received medical care from doctors that required patients to pay upfront for their care. We can only guarantee that we will identify what we can bill for and prepare those claims accordingly. We will submit the bills and call the insurance companies as they process through the system.

“In our experience, a majority of individuals who submit bills on their own without an insurance expert, receive minimal to no reimbursement from the insurance company, and have an even lower success rate with denials and appeals. Understanding how to properly process, submit, and follow-up on claims is vital to ensuring the claim is not systematically denied by the insurance company.

“If Medical Bill Gurus is able to secure reimbursement for treatment, the patient will receive a check directly from the insurance company. Once the funds are deposited, Medical Bill Gurus will send an invoice for a service fee of 20% based on the total amount collected for the patient. Our goal at Medical Bill Gurus is to provide a risk-free option to recovering financial resources, providing free insurance policy evaluation and free medical bill evaluations. If you have already received treatment or are considering treatment and would like to learn about the specifics of your insurance policy or have us look at your medical bills, feel free to SIGN UP for a FREE CASE EVALUATION.”

Sources:

1. Infectious Diseases Society of America [IDSA], “Statement for the House Foreign Affairs Committee Africa, Global Health and Human Rights Subcommittee’s Hearing on Global Challenges in Diagnosing and Managing Lyme Disease — Closing Knowledge Gaps Submitted by the Infectious Diseases Society of America,” July 17, 2012
2. International Lyme and Associated Diseases Society [ILADS]: Lyme: Power of Us Campaign
3. Aucott et al., “Diagnostic Challenges of Early Lyme Disease: Lessons from a Community Case Series,” Bio Med Central Infectious Diseases, 2009; 9: 79.
4. Infectious Diseases Society of America [IDSA] website