Why Congress must enact medical insurance coverage laws for Lyme patients
Feb. 9, 2021
By Jennifer Barrett
As a third-year law student, I recently wrote a law journal article entitled: It’s About Lyme: Why Congress Must Enact Medical Insurance Coverage Laws for Lyme Disease Patients Now.
It was published in Seattle University Law Review’s online companion journal, SUpra.
This blog highlights my personal struggle with Lyme disease and my reasons for writing the article.
I first fell ill from Lyme disease at age 10. And while I suffered from severe fatigue and memory problems, I seemed to recover after two months of oral antibiotics and one month of IV antibiotics.
Some symptoms remain
I suffered from chronic back pain for the rest of my childhood, but no doctor could figure out the cause, and I lived an otherwise healthy life. At 21, however, I developed acute sleep issues and anxiety. As a result, I went entire nights without sleeping, and these symptoms slowly got worse over the next five years.
One fall day in 2016, my health abruptly deteriorated. That morning, I felt a little dizzy walking my normal route to the train station, but I brushed it off and boarded the train. By the time I got to my destination, my heart was racing, and I felt extremely dizzy. I became so weak that I sat down on the floor of the station and realized that if I didn’t get help, I might pass out.
At the hospital, they gave me a pregnancy test, ran some standard blood work, and sent me home without a diagnosis. My white blood cell count was high, but they didn’t think that was an issue. Over the next few days, I felt very odd, I had trouble recalling things and left work early to take a nap. I saw my primary care provider who also was not sure what was wrong.
From then on, my symptoms got worse. I couldn’t walk without experiencing a wave of dizziness, I suffered from extreme fatigue, brain fog, stabbing neck pain and uncontrollable chills. At night, I struggled to breathe as I lay on the couch unable to sleep.
Going from doctor to doctor
I went from doctor to doctor trying to find the cause of my symptoms. Every time I went to the ER, they gave me a pregnancy test and discharged me. One ER doctor refused to give me a Lyme test. Another refused to believe my positive Lyme test and instead told me that I was attention-seeking and psychosomatic.
When my CDC-approved blood antibody test came back positive for Lyme, I thought I was finally on the road to recovery. My primary care provider prescribed antibiotics, and after a few weeks of treatment, I felt fantastic. My neck pain was gone, I was no longer dizzy, and I was finally sleeping.
But when I followed up with an infectious disease doctor, he attributed my positive test results to the fact that I had Lyme when I was younger and attributed my sudden regain of health to the anti-inflammatory agents in antibiotics. He prescribed a test for every infectious disease he could think of and ordered me to stop taking antibiotics.
But as each test came back negative and my symptoms began to flare, the doctor had second thoughts. He agreed to treat me with IV antibiotics for one month, but only if I got a lumbar puncture.
At my two-week check-up, the doctor told me that my treatment would be complete after just one month of IV antibiotics, even though I was still slightly dizzy and exhausted. I decided to seek a second opinion.
A path to recovery?
Luckily this time, I found a Lyme-literate doctor who performed a very thorough evaluation of my current health and medical history and confirmed my diagnosis of Lyme disease. I finally felt like I was on a path to recovery.
Still, the path was not easy. I wanted to quit my job so badly to allow my body and mind to heal. But I was too old for my parent’s insurance plan, and I knew if I quit my job, I would lose the little coverage I had.
I faced numerous insurance claim denials, but had no strength to fight them or to look for other solutions. For example, I was unable to secure home health services for my IV antibiotics treatment. So I had to travel to a hospital, which was an hour from my work and twenty minutes from my house, every day for three months.
When I finally began feeling better, I tried to begin my life again, but something was missing. I had gone through so much that I felt the need to spread the word about the disease and give back.
I realized that I was incredibly lucky to have enough finances to pay for treatment, a great Lyme-literate doctor, and a very supportive family, who helped me tremendously. So, as soon as I recovered my cognition and felt healthy enough, I enrolled in law school in the hopes of helping others with Lyme disease and other chronic illnesses.
The need for insurance coverage for Lyme
The topic for my law journal article came from hearing stories of other patients struggling to receive insurance coverage, as well as my own personal experience. If patients are not able to pay for their medical treatment because public or private insurance does not cover it, they will likely not get better.
I wanted to provide federal legislators with strong scientific evidence, a background on the controversies associated with the illness and a concrete way to improve the lives of patients who are currently suffering.
My goal was to build on the work of local activists who have achieved incredible results passing legislation in some states, by expanding coverage on the national level.
Insurance coverage is especially critical in states with perceived lower incidence rates because it may not be a priority for those states’ legislators. My proposal is based on other federal insurance laws including the Federal Parity Law and the Women’s Health and Cancer Rights Act.
Since Lyme disease patients live in every state in the U.S., federal legislation will provide insurance coverage for patients no matter where they live.
Jennifer Barrett will graduate from law school this spring.
It_s About Lyme_ Why Congress Must Enact Medical Insurance Covera This link will give the entire paper.
The entire paper is 35 pages long, presenting a lot of history, facts, science, and controversies. It obviously took a lot of time to complete and chronicles important facts about the 40 year struggle patients have had in Lymeland. Here are points I believe are important to consider:
Lyme was not discovered in 1976 after children fell ill with JA. It has been reported in the scientific literature since the 1800’s and was even identified in Otzi the iceman, which pretty much means a type of Lyme has been around since the beginning of time. It was officially named Borrelia burgdorferi after its “discoverer” Willy Burgdorfer (a bioweapons researcher) in 1982, but please remember there are hundreds of different strains – many of which haven’t been identified yet.
This is significant for a number of reasons:
- Lyme has been identified globally since the beginning of time which means it’s ALWAYS been a problem. There is the very real issue of whether it’s the same exact organism or not, which is a discussion for another day. There are hundreds of strains and testing only picks up one. We aren’t even broaching the topic of coinfections, which also have many strains and some of which have been bioweaponized.
- Doctors around the world have been treating this with antibiotics forever. The fact some patients continue with persistent symptoms is also not new, and has always been a problem, but simply denied and ignored. Polly Murray’s book, “The Widening Circle” chronicles her entire family’s bouts of health followed by bouts of illness. The waxxing/waning nature of Lyme/MSIDS has been discussed in the scientific literature for a long, long time.
- Steere et. al initially believed it was a virus and that it would simply take its course, and because Lyme symptoms wax and wane, this also added to the unscientific belief that persists today – that it will simply go away on its own. This has also resulted in doctors not “connecting the dots” that a patient’s migratory symptoms may all be interrelated and due to Lyme/MSIDS.
- Because of seronegativity (testing negative), this also has fed into the false illusion that this is a minor deal, because case numbers are so abysmally low based on faulty testing that the CDC in one year increased cases across the board ten fold! Many state it’s still much higher than even this.
- Current brain autopsies have shown viable organisms which means this can persist, sequestered in the body where most antibiotics can’t reach it in a normal way. The subsequent brain diseases will be misdiagnosed as Alzheimer’s, dementia, Parkinsons, or some other chronically progressive brain disease label.
Her statement that 160,000 NEW patients per year may experience persistent symptoms appears to be derived from approx. 30% going onto have symptoms when the true number is closer to between 40-60%. This is pertinent because the real problem is far greater.
There exists a concern over Congress enacting legislation forcing insurance companies to pay for “clinically diagnosed Lyme and coinfections treatment, as per ILADS.”
- There is great polarization in the medical community, much like COVID, and there is currently TWO standards of care. Pushing for a mandate could inadvertently backfire and remove the ILADS standard all together – thereby limiting patient choice even further.
- A top-down federal approach could then further mandate inadequate, unscientific, and inadequate treatment. Until the issue of persistence has been resolved and accepted, there is a very real risk that only the IDSA mono therapy of doxycycline for 10-14 days would be the only standard of care, which has been proven to be insufficient in nearly every antibiotic study ever done. This then, could doom even more patients to a life-time of suffering.
While the author states that untreated Lyme can cause worsening symptoms and the risk of treatment failure, this has also been seen in treated patients which means there are far more deeper issues about treatment than meets the eye. It also shows that medicine should never be a “one sized fits all” approach, which appears to be the current federally accepted standard of care. Just look at how COVID has been handled, with severe censorship, banning, and persecution of anyone who believes in treating it differently. Further, what she calls “late stage” Lyme can happen early. This thing doesn’t fit in a box, which is precisely why treatment should be in the hands of the doctor, not some politician, lawyer, government agency, or medical board.
Regarding 50% suffering coinfections…..again this number is highly suspect. All numbers are typically much higher in the real world. Some of these “coinfections” haven’t even been named yet, and there are strains being continually discovered.
While the section on persistent infection is sound, it has not be accepted by public health authorities, professional medical groups, and therefore insurance companies. It should be pointed out that severe conflicts of interest exist between the groups thereby ensuring continuing biases towards chronically infected patients requiring extended care.
Interestingly, these groups continue to state extended antibiotics are too risky, when the same exact groups have no problem pushing toxic drugs like remdesivir for COVID or chemotherapy for cancer patients. The bias is plainly clear to any casual observer.
Any federal investigation into Lyme/MSIDS is squashed without a chance. This continues to play out, despite clear evidence of conflicts, bias, and impropriety including the targeting of doctors who dare to treat differently.
The paper gives the sad story of Dr. Burrascano who testified in the Senate about the witch-hunts against doctors who treat chronic Lyme. Karma proved it shortly thereafter when the NY medical board opened an investigation against him. It wasn’t until 2001 that 37 of the 39 charges brought against him were cleared. The stress this causes can not be overstated. All of this led to NY adopting Resolution 2155 which essentially tells insurance companies to ‘cease and desist from targeting physicians’ until the science is settled. The document then gives legislation in Illinois as a great example of protecting Lyme literate doctors.
But, the problem is always the ‘law of unintended consequences.’ I’ve heard from advocates in other states as well as LLMDs that doctor protection laws actually draw a target onto the backs of doctors and that doctors have had MORE issues with the state medical board AFTER this type of legislation is put into place. One thing is for sure no Lyme legislation should be considered until LLMDs have been carefully consulted. It is, after all, the foundation from which all else springs. Without good, experienced doctors, we patients would be hopelessly lost.
The author then takes a stab at government funding for research. The problem here again is the ‘law of unintended consequences.’ In order to even discuss this with any clarity, certain hidden things need to be brought into the light.
- Dr. Fauci, head of NIAD for 7 presidencies, and essentially present since the beginning of the Lyme debacle, has been the gatekeeper of government research funds. You want money. You have to go through Tony.
- Fauci has a long, long history riddled with conflicts of interests. To say he’s a fan of Big Pharma and has many apron strings attached to it would be an understatement.
- A perfect example is current COVID treatment. Old, proven, safe, cheap treatments remain unapproved while shiny new, expensive, ineffective, dangerous treatments are given FDA approval. Why is that? Money, my friends, and lots of it. The ONE NIH-funded trial, directed by Fauci, announced Remdesivir worked for COVID, but ignored mortality completely, as well as the toxic side effects. This is just one example of hundreds. BTW: this is remdesivir’s 2nd go around as it flopped for Ebola, so they dug it out of the drug graveyard for COVID to make up for lost profits.
- COVID has hopefully demonstrated to the world that science has been completely hijacked and can no longer be trusted at face value. Big Pharma is a powerfully big monster that has a huge lobbying presence in Washington (swaying politicians), funds medical medication – which influences medicine and science at an unprecedented level. There is also a revolving door between government health agencies and Big Pharma.
In light of these three pieces of information we should conclude that throwing any amount of government money at yet more poorly done, biased research is unhelpful at best. This is hard for many patients and even advocates to understand. Money toward research is a good thing, right? It depends. What research and who’s doing it? If it’s the same people doing the same biased work, no amount of money can change what’s already been predictably cast. The Klempner trial is a perfect example of this closed loop system where shoddy, biased research is still used as the law of the land. But this trial is hardly an isolated example. The ONE poorly done study for remdesivir is STILL what is used to push on hospitalizes patients to this day. Please note that Klempner is back at it, now creating a new Lyme “vaccine”. Research in Lymeland has been tightly controlled by what many call The Cabal. Nearly all of them are involved with creating vaccines, and have a history with biological weapons.
They say, “There is nothing new under the sun,” and they are right.
The same people have been doing the same things for over 40 years.
This section again points out the ‘law of unintended consequences” regarding legislation mandating insurance coverage for Lyme. Try and remember that when it comes to the law, every single word matters and can be misused, thereby actually making things worse for patients and the doctors who dare treat them. The author admits some snags have occurred as most LLMDs are not certified in the specializations listed in a statute. Further, most insurance companies consider long-term treatment for Lyme “experimental” which needs to be clearly listed in legislation regarding treatment.
Again, this is complicated stuff folks! And again, I’ll reiterate that LLMDs NEED to be in on this discussion. The more, the better. And there better also be a number of experienced attorneys that have learned from the school of hard knocks, because it doesn’t get any harder or dirtier than in Lymeland.
The document delves into the International Classification of Diseases Codes (ICD) and that without these magical codes, you will NEVER obtain reimbursement for medical care. For decades patients haven’t been able to obtain reimbursement due to the fact that on paper, what they have doesn’t exist because there’s no code. Jenna Luche Thayer has done phenomenal work in this area. She and her husband are both patients and Jenna just happens to have previously been a government whistleblower with years of experience fighting the system – which is precisely what makes her so effective. She has years of experience in this type of work.
I’m struggling with the author’s title: “National problems require national solutions.” Our entire planet has been locked down due to a “national solution.” Each nation has relied on one man’s modeling, and a few figureheads in government to make decisions, and they’ve been wrong on virtually every single aspect of COVID. There have been no forth-coming apologies or changes other than them continuing to push the exact same wrong narrative they’ve held from the beginning. We should keep this backdrop in mind when discussing Lyme, because it’s quite similar. Lyme and COVID are just two of many with the same organizations/people making the decisions. Please don’t forget this!
Frankly having the federal government mandate anything scares me to death. So many things can go wrong and have gone wrong putting the power into the hands of the few. Doctors are educated to make medical/health decisions. The power needs to be in the hands of those who spend their lives studying and in medical practice, not bureaucrats, politicians, and corrupt public health ‘authorities’ who get kickbacks on the very things they are providing guidance for.