January 26, 2018

The High Cost of Misdiagnosis for Patients with Lyme Disease and Other Tick-Borne Diseases

Patients can pay a high price for the misdiagnosis of Lyme disease and other tick-borne illnesses, due to numerous factors that can quickly add up to significant financial challenges.

The following article sheds light on some of these issues and the financial burden they can place on patients and their families. By growing your awareness of the potential costs that can result from misdiagnoses, you can make more informed decisions about different diagnostic testing options that could help you minimize health risks and financial challenges over the longer term.

Misdiagnosis is More Common—and Costly—Than Most People Realize

A recent nationwide survey conducted by LymeDisease.org revealed that less than a quarter of participating patients reported being correctly diagnosed within six months of the onset of their Lyme disease symptoms.1https://www.nurse.com/blog/2015/07/01/misdiagnosis-of-lyme-disease-problematic/What’s more, 61 percent said it took more than two years to receive a correct diagnosis.2https://www.nurse.com/blog/2015/07/01/misdiagnosis-of-lyme-disease-problematic/ Those numbers are particularly concerning when you consider that the best patient outcomes are generally achieved when Lyme disease and other tick-borne diseases are diagnosed and treated as early as possible.

When Lyme disease or other tick-borne illnesses are misdiagnosed, the disease-causing infection has more time to spread, which can lead to more severe or chronic health issues. That can lead to months and even years of escalating costs for patients and their families due to ongoing doctor visits, myriad diagnostic tests, ineffective medications, and other medical expenses. Plus, since many of these illnesses progress, symptoms can often worsen or lead to additional health issues and complications that can be more costly to treat and further diminish a patient’s quality of life. In one recent study, researchers found a huge disparity in the cost of treatment strategies for patients with early-stage versus later-stage Lyme disease. Specifically, it found that the cost of treating acute uncomplicated Lyme disease was about $100, whereas late-stage or chronic Lyme disease with neurologic manifestation was over $6,000.3https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4317177/ Similarly, another study found that having one or more symptoms relating to chronic Lyme disease, which is also known as post-treatment Lyme disease (PTLD), was associated with $3,798 more in healthcare costs, as compared to those with no post-treatment symptoms.4https://www.sciencedaily.com/releases/2015/02/150205095049.htm

Later-Stage Symptoms Can Also Lead to Unexpected Financial Burdens

In addition to higher medical-care costs, misdiagnosis can also lead to other financial hardships for patients. As the LymeDisease.org survey reveals, the financial impact of misdiagnosis goes beyond medical costs, with 42 percent of patients with chronic Lyme disease or PTLD reporting that they had to quit work or cut back on hours due to illness.5https://www.nurse.com/blog/2015/07/01/misdiagnosis-of-lyme-disease-problematic/ Additionally, 20 percent of respondents reported being on disability at some point, whether through private insurance or state, federal, or other public agencies due to Lyme disease.6https://www.nurse.com/blog/2015/07/01/misdiagnosis-of-lyme-disease-problematic/

Missed or Misdiagnosed Coinfections Can Also Have Costly Consequences

Because certain species of ticks can transmit more than one type of disease to humans, patients can sometimes have more than one infection. These coinfections with other tick-borne diseases can further complicate diagnosis, thereby delaying effective treatment, which can lead to additional health issues and costs. Lyme disease, for example, often occurs alongside coinfections that cause tick-borne relapsing fever (TBRF), Powassan,  babesiosis, ehrlichiosis, anaplasmosis, and rickettsiosis. In fact, some doctors suspect that Babesia is present in about 20 percent of Lyme disease cases.7http://lymediseaseguide.net/lyme-disease-test-cost In some cases, diagnosing and treating the coinfection is critical to eradicating other tick-borne diseases. These and other factors highlight the importance of testing early for potential coinfections, based on symptoms. Patients should consult with a doctor who specializes in diagnosing and treating tick-borne diseases to recognize possible symptoms of coinfection and to recommend appropriate tests to identify or rule out coinfections.

Higher Short-Term Costs Could Lead to Significant Long-Term Savings for Patients

Lab tests are often essential to ensuring the earliest and most accurate diagnosis of tick-borne diseases, thereby reducing the risk of misdiagnosis—and the various health and financial challenges that can result. However, more advanced and comprehensive tests, which can detect diseases earlier and with greater specificity, are often not covered by insurance plans. As a result, these tests may require higher initial out-of-pocket costs by patients—a consideration that can sometimes cause patients to choose less-costly testing options that may not be as accurate or reliable. However, as this article highlights, those costs may be far less than the long-term financial burdens that can arise as the result of misdiagnosis of a tick-borne disease.

Given the critical importance of effective lab testing, many organizations have stepped up to help offset out-of-pocket costs for patients and their families. A number of financial-assistance organizations, for example, may be able to help cover costs for Lyme disease testing. You can find a list of many of these resources at http://lymediseasechallenge.org/financial-assistance/.

Additionally, be sure to consult with a doctor who is familiar with diagnosing and treating tick-borne diseases. If you suspect you may be at risk for Lyme disease, for example, The International Lyme and Associated Diseases Society (ILADS) and lymedisease.org can provide a list of Lyme-aware doctors in your area. Most importantly, be sure to discuss all potential options with your doctor, including more advanced diagnostic tests that might not be covered by insurance.

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