A federal antitrust lawsuit says health insurers have conspired to keep Lyme disease victims from getting proper treatment, endangering their lives, inflicting pain and suffering, and costing them hundreds of thousands of dollars because of it.
The plaintiffs are 28 Lyme disease victims irrrepably harmed by the conspiracy. Those named as defendants are 8 major health insurance companies, a medical association allegedly paid off by the insurers to falsify treatment regiment, and seven individual doctors.
Lyme disease is an infectious disease caused by borrelia bacteria and spread by ticks, mosquitoes and other blood sucking insects. The first signs of the disease typically includes a light bullseye-shaped rash around the bite site, followed by symptoms such as fever, headache and fatigue. If the illness is not treated properly, there may be severe joint pains, facial numbness, heaing loss, severe headaches, neck stiffness, and heart palpitations. Shooting pains and tingling in the arms and legs can develop. Even with treatment, 10% to 20% of those infected with the disease can develop further joint pains, memory problems and stay tired for at least six months. Serious complications can occur, eventually resulting in Lyme disease victims unable to live a normal life, with death coming as the disease progresses.
Successful treatment can hinge upon identifying the specific strain or genospecies of borrelia one is infected with and applying the correct antibiotic. For this there are only two labs in North America and they require samples of blood as well as spinal or joint fluid to conduct a definitive lab test.
In 2015 there were 28,000 confirmed cases of Lyme disease across the country, out of an estimated 300,000 that the Centers for Disease Control and Prevention claim are annually infected with the disease. Fully 95 percent of those cases are contracted in the Northeast and Midwest.
Lyme is epidemic in parts of the U.S. and Canada, yet most doctors know nothing about it and are reluctant to educate themselves on the disease.
Treatment takes time, may be complicated and expensive. The majority of these cases are, both as alleged in the legal brief and demonstrated in many other medical records, not treatable with antibiotics.
Lead plaintiff Lisa Torrey charges in the lawsuit that after suffering with intense migraines, problems with her hearing, nerve pain and an irregular heartbeat, she sought out diagnosis and treatment for whatever she had contracted. She went to no less than 36 doctors, was misdiagnosed many times including suggestions she had either fibromyalgia or multiple sclerosis, and was even told the symptoms “were all in her head”. Eventually, however, she was finally properly diagnosed with Lyme disease.
Even then, however, she could not get appropriate health insurance coverage.
In the lawsuit, Torrey’s attorneys, Sharder & Associates and headed up by lead attorney Eugene Egdorf, said part of the fault for why Torrey could not get health insurance coverage resides with the Infectious Diseases Society of America (IDSA). IDSA is a medical association comprising 11,000 members focusing on the research of disease, sharing of information on findings from that research, and the development of clinical practice guidelines.
The problem is some of those IDSA members are paid by the insurance companies to develop specific clinical practice guidelines. Some of those guidelines are in turn guided by the insurance companies, the suit alleges, to save the insurance companies money by establishing false rules to avoid proper treatment.
Lyme disease is expensive and complicated to treat, as many studying the illness have found. Lead plaintiff Torrey acknowledges that, but takes it a step further. In her lawsuit, she alleges that a number of the bigger health insurers in the U.S. said treating Lyme disease was too costly for them to afford, and “red-flagged” it, as the suit says, followed by making “a concerted effort to deny coverage for treatement of Lyme disease”. Going back as far as 1992, “the Insurance Defendants, with the help of the paid IDSA Panelists, decided that long term antibiotic treatment was not necessary and all Lyme disease patients could be cured in less than a month. By August of 1992, the Insurance Defendants had imposed an intravenous antibiotic limit of twenty-eight days.”
Because of the seriousness of the matter, even back then, the legal brief continues, “Initially, the Insurance Defendants provided coverage for Lyme disease patients, covered long-term antibiotic treatment, and even paid for extended hospital stays to treat patients with Lyme disease who did not respond to short-term antibiotic treatment. This allowed doctors to properly assesses and treat patients with chronic Lyme disease and prevented the suffering and death of many thousands of Lyme disease patients.”
Providing this kind of care was not going to last, however, because of costs, the suit alleges. So, as Torrey goes on in the legal brief, the insurance companies involved hired IDSA-affiliated medical professionals involved in the research of Lyme disease to draft guidelines saying the disease could be treated in 28 days with antibiotics. These guidelines, which date back to the year 2000, were written by doctors who were only studying the disease and had no experience treating it.
The lawsuit drives this point home. As it points out:
“The doctors who actually treat Lyme disease have known for a long time that while many patients who contract Lyme disease can be cured with short-term antibiotic treatment, a large number of patients, up to 40%, do not respond to short-term antibiotic treatment. These patients with chronic Lyme disease require long-term antibiotic treatment for many months until the symptoms are resolved. Lyme doctors also know that chronic Lyme disease patients who do not respond to short-term antibiotic treatment, and do not receive long-term antibiotic treatment, will suffer debilitating symptoms, will be in constant pain, will be unable to function or live a normal life, and will eventually die from Lyme disease.”
The suit goes on further to say that:
“Similarly, Lyme doctors know that if Lyme patients are undiagnosed, or are misdiagnosed with another ailment, the Lyme disease can become so severe that without long-term antibiotic treatment the disease will spread to their joints, their heart, and their nervous system causing crippling muscle and joint pain, disabling fatigue, arthritis, neurological disorders, cardiac disorders, depression, memory loss, bladder loss, bowel dysfunction, visual loss, and death.”
Yet despite the wealth of knowledge about the inadequacy of antibiotic treatments and the seriousness of the illness, Torrey’s suit goes on to say that the insurance companies held to their position about using 28 days of antibiotics to cure all Lyme disease patients, and actually took it a step further. In the legal brief, Torrey alleges the IDSA had other doctors paid for by the insurer defendants in this case, and came up with even tighter guidelines in what treatments might be allowed.
The insurers have also been called out for demanding licenses be revoked for those doctors who were continued to investigate further treatment of Lyme disease beyond the antibiotic cases. The legal complaint goes on, saying “As a result of their speaking out, from 1997 to 2000, more than 50 physicians in New York, New Jersey, Connecticut, Michigan, Oregon, Rhode Island and Texas were investigated, disciplined or had had their licenses removed. Many of these doctors were reported to their medical boards by the insurance defendants.” Insurance companies also reported doctors attempting more involved treatment of the disease to medical boards, which scared many into backing off. This ‘doctor bullying’, as the practice has been referred to, ended up requiring patients to have to travel long distances and pay major expenses out of pocket to get appropriate care.
The document also points out that one of the insurers’ paid professionals who evaluated claims for Lyme disease treatment was paid over $560 an hour to deny claims.
The lawsuit has 28 individuals on the plaintiff side, each with their own versions of what Torrey alleges.
One of those, David Kocurek, an aerospace engineer who worked for NASA, developed symptoms from the disease similar to Parkinson’s trembling and twitching movements. According to the lawsuit, “He visited more than 25 doctors and was told he did not have Lyme disease. He even tested negative for Lyme disease based on the IDSA testing guidelines.” It goes on to say that, “He was only diagnosed with Lyme disease after he researched the issue himself and convinced the doctor to test him again.” He eventually had to pay for his own treatments – much too late – and died from the illness in April 2016.
Torrey and the 27 other plaintiffs filed this case with the IDSA, Blue Cross and Blue Shield Association, Blue Cross and Blue Shield of Texas, Anthem Inc., Aetna Inc., Cigna Corp., Kaiser Permanente Inc., United HealthCare Services Inc., and UnitedHealth Group as defendant insurer companies. Gary P. Wormser, Raymond J. Dattwyler, Eugene Shapiro, John J. Halperin, Robert B. Nadelman, Leonard Sigal and Allen Steere are individual doctors also named as defendants in the suit.
In response to the suit, the insurance companies and doctors themselves did not comment, even via their lawyers. The IDSA did not answer directly, but made a statement on November 14, that “While anecdotal evidence may be relevant at times, it cannot be the basis for guiding patient care. The published guideline, ‘The Clinical Assessment, Treatment and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis,’ reflects the best information science provided to the broad range of physicians who might treat a patient with symptoms of Lyme disease.”
The reality is the treatment protocols the IDSA is defending seem to be, at least to the plaintiffs in the case, are the real examples of ‘anecdotal evidence’ in the treatment of this horrible disease. Even worse, it is falsely planted ‘anecdotal evidence’ which is resulting in the severe and unnecessary long-term suffering and pain for many thousands of patients caught in the conspiracy web laid out in this lawsuit.
No information is yet available on when the first hearings may happen in this case.