Should Lyme patients have Medical Coverage for Lyme disease?
By Maura Ibanez, Age 16
Lyme disease is a very complex multi-system illness with fluctuating clinical manifestations. It affects the nerves, brain, muscle and joints, the heart, the eyes, and every other part of the body, resulting in anything from arthritis and mental illness to heart failure and dementia. The Lyme Borrelia bacteria was discovered in 1981, by Willy Burgdorfer, who identified that the disease came from deer ticks (“Under Our Skin”). He discovered the bacteria that causes Lyme disease was a spirochete. Unfortunately, four decades later, Lyme disease is still misunderstood, misdiagnosed, and often denied. Learn more about Lyme Disease here.
Spirochetes are bacteria with a spiral-like body, similar to a corkscrew, which allows it to drill itself into tissue, bones, muscles, organs, and any other part of the body. In 1982 Burgdorfer named his newly discovered spirochete Borrelia Burgdorferi. Lyme disease is currently the most common vector-borne disease in the United States. Unfortunately, Lyme disease does not typically travel alone. It is highly common for a person to be infected with multiple disease-causing microbes called co-infections. Some of the more common co-infections include Bartonella, Babesiosis, Ehrlichiosis, Anaplasmosis, and Rocky Mountain Spotted fever. These are just to name a few. If Lyme and/or its co-infections are not treated quickly, the bacterium spreads throughout the body, “hiding it from the host’s immune system.” (Richards, par. 2)
Several viewpoints, including the Centers for Disease Control (CDC), Insurance companies, Infectious Diseases Society of America (IDSA), along with patients with Lyme disease are debating the question, should Lyme patients have access to medical coverage? It is estimated that over 427,000 individuals are infected each year with Lyme disease. (Adaptive, par 1.) With this in mind, many people don’t even know that they have Lyme, because they are often misdiagnosed. Current diagnostic testing for Lyme disease is highly unreliable. The CDC recommends a two tier testing system using the ELISA and Western Blot.
Interestingly, “Both the ELISA and the Western blot are indirect tests — that is, they do not detect the Lyme pathogen itself. These tests measure antibodies made by the immune system in response to the Lyme infection. There are several reasons why a person who actually has Lyme may not produce measurable antibodies. One reason is timing. It can take weeks or even longer for the body to create a detectable immune response. Unless, and until the body develops these antibodies, the tests will be negative, even if the person has Lyme disease.” (Lonnie Marcum. par. 6) According to a recent study from the Bay Area Lyme Foundation, 70% of the CDCs two-tier testing, failed to accurately diagnose blood samples from patients. (Lymedisease.org, par. 1) This means that only about 30% of Lyme patients are being diagnosed.
Common symptoms of Lyme are memory loss, cognitive dysfunction, neurological issues, rash, extreme fatigue, muscle weakness or paralysis, muscle and joint pain, ringing in the ear, vertigo, shortness of breath, abrupt mood changes, seizures/tremors, sleep disturbances, and chronic flu-like symptoms. This is only a handful of over 300 different symptoms that come with Lyme disease. Lyme can be extremely debilitating, leaving many people too weak to function like normal people. Unfortunately, many are often bed bound, while others can not sustain a steady job. With Lyme treatments being so expensive and not covered by insurance, it often causes patients to go into high credit card debt, lose their homes, file for bankruptcy, or be forced to choose not to treat, risking their health and lives.
Those most affected by this controversy are patients with Lyme disease. Sadly, people with Lyme are important stakeholders because they are extremely affected by the lack of available treatment. When patients do find care, they often have to travel to other cities, or even out of state to find care. Many patients have to travel for care, because it is often difficult to find a doctor willing to treat them. These doctors are called Lyme Literate doctors or LLMDs. Most LLMDs will not work with insurance companies because of the limiting and restrictive guidelines produced by the IDSA. LLMDs. “It is difficult for doctors who want to stand up for these patients because it is a political disease and economical disease as much as it is a bacterial borne infection.” (Dr. Horowitz, Under Our Skin)
Patients Are Spending Thousands of Dollars in Out of Pocket Costs
Patients are spending thousands of dollars out of pocket due to the fact that most treatments are not covered by medical insurance. “Since the CDC denies the existence of chronic Lyme, insurance companies are not required to cover costs related to the disease. Patients spend on average $53,000 per year out-of-pocket for tests, doctor visits, pharmaceuticals, and supplements.” (Lyme Stats, par. 3)
When doctor visits, lab work, and medications are not covered by insurance, patients are forced to face high medical costs. “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.” (Medical Bill Gurus, par 18) Because of this, most Lyme Literate Medical doctors (LLMDs) won’t be in-network with insurance companies, causing patients to pay upfront and out of pocket whether they have the financial resources or not.
Highly Restrictive IDSA Guidelines
In order to initiate an investigation with insurance companies, medical boards need a complaint, which typically comes from insurance companies trying to get rid of doctors who cost too much money, according to Dr. Joseph Burrascano. (Under Our Skin https://underourskin.com/film/) The guidelines provided by IDSA are very restrictive and threatening in regards to the treatment of and dealings with Lyme disease. Doctors have to be careful of what they do and how they treat their patients. If they don’t follow the guidelines they could be considered dangerous. Insurance companies that don’t want to pay for Lyme patients’ treatments, exploit the guidelines so that they can save money. Since the IDSA guidelines say that chronic Lyme doesn’t exist, insurance companies can get away with denying medical coverage. If chronic Lyme “doesn’t exist”, then medical professionals and insurance companies don’t need to address it nor treat it.
According to science writer Kris Newby, The IDSA has a small group of “gatekeepers” for the information about Lyme disease, implying that they are selective about what information is shared. As Dr. Burrascano points out, a worldwide body of scientific literature is in contradiction to what the IDSA guideline authors are saying about Lyme disease (Under Our Skin). There is also a great deal of personal interest or investment amongst the authors of the guidelines. “6 of 4 authors, or their universities hold patents associated with Lyme disease or its co-infections. 4 of 14 receive funding from Lyme or co-infections testing manufactures. 9 of 14 authors or their universities have received money from Lyme disease vaccine manufacturers.” (Kris Newby, Under Our Skin)
Influence over Insurance Companies
The CDC and IDSA have a lot of influence on how insurance companies operate. These two entities have a lot of power, and doctors and medical professionals are required to follow the guidelines provided by the IDSA. The IDSA guidelines evaluate the available evidence and use the GRADE process to develop evidence-based recommendations to assist practitioners and patients in deciding what’s the most appropriate health care for specific patients. (IDSA Practice Guidelines, par. 1)
GRADE stands for Grades of Recommendation Assessment, Development, and Evaluation. The makers of the GRADE system accentuate the guideline’s dependability and determine the strength or quality of medical studies. The CDC and IDSA argue that Lyme is easily treatable with two to four weeks of antibiotics, with patients seldomly needing any further treatment. The antibiotics they commonly recommend using for treatment, usually only after erythema migrans develop, are doxycycline, amoxicillin, or cefuroxime, and axetil.
According to NBC’s Think, studies show that the antibiotics recommended by IDSA to cure Lyme disease don’t even eradicate the organism in the test tube. (NBC News, Phillips Steven. Par 13) Most doctors will not even treat Lyme until an erythema migran (commonly, a bulls eye rash) has developed. However, according to data from Dr. Allen Steere’s published work, only 25 percent of infected people acquire a bull’s eye rash. This leaves a lot of errors for proper diagnosing (Dr. Steven Phillips, MD. par 10).
Continual Denial by IDSA
“The IDSA completely ignores a world wide body of literature that is in contradiction to what they are saying.” (Dr. Joseph Burrascano, Under Our Skin) They continue to disregard new studies and scientific findings regarding chronic Lyme. Although they argue that chronic Lyme is not an issue, alternatively, there is no research showing that such a short dosage of antibiotics rids the body of Lyme disease.
Leading up to the IDSA guidelines from the year 2000, “many doctors who actually treated Lyme patients spoke out against the IDSA guidelines, complaining that the guidelines were too restrictive to properly treat and diagnose chronic Lyme patients. These doctors knew that short term antibiotics of twenty-eight days failed to treat up to 40% of patients with Lyme disease. This means more than 100,000 Lyme disease patients every year would be untreated if the IDSA guidelines were followed.” (Torrey vs. Infectious Disease Society of America. par 64)
If a patient becomes extremely sick again after treatment, many doctors will often argue that the individual got re-infected. Although that could be accurate for some cases, many times it is because the patient’s body failed to completely eradicate the spirochetes, leaving the mature spirochetes the chance to reproduce, and further invade the body. When spirochete eggs hatch they transport through the bloodstream and burrow in organs, tissue, muscle, bone, and other body parts, leaving the potential for an increase in symptoms or the development of new ones. (Kova, “Borrelia: Lyme Disease Life Cycle. A Cyclic Bacteria”)
Patients Want to Be Validated, Not Dismissed
Lyme disease can completely affect and change one’s life. Patients want to be heard and their symptoms need to be validated, rather than dismissed. It would benefit patients more if IDSA started looking outside their outdated research and started listening to updated peer-reviewed studies that show the severity of Lyme disease and the actual damage it does to the body. Patients are losing their quality of life, or even life itself. It has been decades since Lyme disease was first discovered yet the medical community still cannot agree on how to treat this devastating disease.
“A Call to Improve the Diagnostic Odyssey in Lyme Disease Senior Vice President Charles Sang on Expanded FDA Clearance of ClonoSEQ® in CLL.” Adaptive Biotechnologies, 1 Aug. 2020, https://www.adaptivebiotech.com/2020/08/. Accessed 14 December 2020.
Childs, Alison. Lyme Stats, n.d., www.lymestats.org/phone/index.html Accessed 10 Nov. 2020.
Dr. Cameron, Daniel. “Dr. Daniel Cameron’s Team Treats Patients with Lyme Disease According to ILADS’ Guidelines.” Daniel Cameron, MD, MPH, 0AD, https://danielcameronmd.com/cameron-lyme-treatment/ Accessed 14 Nov. 2020.
District court, E.D. Texas. Torrey v. Infectious Disease Society of America. Robert William Schroeder III. vol, 5:17-cv-00190, Court Listener, https://www.courtlistener.com/docket/6231658/torrey-v-infectious-diseases-society-of-america/?page=2 Accessed 11 Nov. 2020.
Envita Medical Center. “The Reasons Why Insurance Companies Refuse to Cover Natural Medicine.” Envita Medical Center, n.d., www.envita.com/lyme-disease/the-reasons-why-insurance-companies-refuse-to-cover-natural-medicine Accessed 13 Nov. 2020.
Kova, Christina. “Borrelia: Lyme Disease Life Cycle. A Cyclic Bacteria.”Lady of Lyme, 20 July 2012, www.ladyoflyme.com/blog/borrelia-lyme-disease-life-cycle-a-cyclic-bacteria Accessed 12 Nov. 2020.
“Lyme Disease.” Steven Phillips, MD, 1 May 2021, https://stevenphillipsmd.com/lyme-bartonella/lyme-disease/ Accessed 13 December 2020.
Marques, Adriana. “Chronic Lyme Disease: An Appraisal.” PubMed Central (PMC), 1 June 2008, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430045/. Accessed 14 Nov. 2020.
Phillips, Steven. “Opinion | Lyme Disease Patients Are Fighting for Their Lives While Researchers Squabble.” NBC News, 25 Jan. 2020, https://www.nbcnews.com/think/opinion/lyme-disease-patients-fight-their-lives-while-academics-fight-each-ncna1122756. Accessed 14 December 2020.
Richards, Karen. “How Lyme Hides.” Prohealth, 2 Oct. 2018, www.prohealth.com/library/evergreen_pages/how-lyme-hides Accessed 15 Nov. 2020.
Scott, John D. “Everything about Lyme Disease Is Steeped in Controversy. Now Some Doctors Are Too Afraid to Treat Patients.” ILADS, 1 Oct. 2019, www.ilads.org/everything-about-lyme-disease-is-steeped-in-controversy-now-some-doctors-are-too-afraid-to-treat-patients/ Accessed 13 Nov. 2020.
“Study: CDC’s Two-Tier Lyme Testing Was Inaccurate in More than 70% of Cases.” LymeDisease.Org, 26 Feb. 2020, https://www.lymedisease.org/study-cdcs-two-tier-lyme-testing-was-inaccurate-in-more-than-70-of-cases/. Accessed 14 December 2020.
Under Our Skin, Andrew Abrahams, Open Eye Pictures, 1998. Pluto.tv/where-to-watch
Kova, Christina. “Borrelia: Lyme Disease Life Cycle. A Cyclic Bacteria.”