Florida Lyme Advocate Appeals
For Full Treatment of Chronic Lyme
An Appeal to The North Carolina State Board
Dear members of the North Carolina State Licensing Board and others:
I am writing to voice the collective support of Dr. Joseph Jemsek, on behalf of Lyme disease patients across the state of Florida. As the founder and director of Florida Lyme Advocacy, I have lived with later-stage, chronic neurological Lyme infection for six years and counting.
In my role as this state's lead legislative and education advocate in Tallahassee, I have listened to, read, and recorded thousands of later-stage, chronically Lyme-infected patients in under two years where the CDC's numbers reflect only 46 in 2005; 89 in 2006, respectively.
Thousands of Florida's patients have lost years of their lives, exhausted their life savings, and lost their homes and nearly their lives before traveling hundreds to thousands of miles to see Dr. Jemsek and other world leading Lyme treating experts in the northeastern United States. Many who never found Dr. Jemsek and his Lyme literate colleagues or simply found them too late are dead.
Sadly in Florida, as in most states in the United States, this disease is under-counted, under-treated, and denied insurance coverage due to the perpetuation and misuse of exclusionary CDC blood test and rash surveillance criteria; the Public Health's validation of the same; the widely followed dogma and rhetoric of the IDSA's (Infectious Disease Society of America) outdated, exclusionary "guidelines"; and the exploitation of all of these inaccuracies by profit-driven insurers.
As a result, this hidden epidemic continues to unfold, nationwide, and the few remaining Lyme literate physicians capable of making the very "clinical diagnosis" the CDC, Public Health officials and, ironically, the IDSA all acknowledge as the only appropriate markers of diagnosis and initiation of treatment; are increasingly being targeted by those who do not want to count, diagnose, treat or pay for life saving treatments for later-stage chronic Lyme disease.
Your job as a licensing board is to assure the safety and basic human rights all human beings to receive the best standard of care available at any given time within each specific area of modern medicine. Your responsibility is to protect the inherent human right of every citizen of North Carolina and every patient treated by your state's licensed physicians, to informed consent.
That can only occur when every patient, including later-stage, Lyme infected patients, are given unbiased, objective information and full disclosure of all the treatment options that exist. Not just those that are most profitable to insurers or those which promise the most expeditious diagnoses and treatments to practitioners more concerned with HMO five-minute windows of year-end bonuses than human lives, literally.
Dr. Joseph Jemsek has diagnosed and successfully treated over 1,000 patients specific to the later-stage Lyme-infected population. Many of these patients have been brought out of wheelchairs, off walkers and salvaged from psychotic and severely neurologically impaired states equivalent to Alzheimer's, Parkinson's, MS, Lupus and the like.
Our patient records in Florida reflect over 3,500 later-stage Lyme-infected patients found in under one month's time by two advocates vs. the CDC's 145 for two years. These patients spent an average of 5-20 years, saw anywhere from 7 to over 100 doctors, and lost their life savings, homes and some nearly their lives in search of medically sound care and Lyme literate treating physicians. Many others died before they could find competent care.
A substantial percentage of these patients have exhausted their life savings and those of their loved ones and friends to travel to physicians such as Dr. Jemsek to finally receive comprehensive and medically responsible and sound treatment they could not find in the entire state of Florida.
Dr. Jemsek's clinical and scientific notes and peer-review literature reflected in support of patients here in Florida having to go through numerous grievance processes to receive any treatment at all, have been voluminous, articulate and meticulous.
The counter arguments offered by insurers attempting to misuse CDC surveillance criteria and the exclusionary "guidelines" and dogma of the IDSA, have been one or two line denials based on negative CDC surveillance criteria the CDC, itself, continues to warn are NOT to be used for diagnosis, nor exclusion of this disease; and certainly, NOT for determination of the means, levels, methods or duration of treatment for LATER-STAGE, CHRONIC LYME INFECTION.
They continue to state these surveillance criteria miss AT LEAST 90% of actual Lyme-infected patients at risk of permanent disability, multi-system complications and even death.
"Evidence" is defined as "information or signs indicating whether a belief or proposition is true or valid.
What is evidence if not the actual occurrence of events and that which "proves" to save lives? When a treatment works, you use it again. When treatment outcomes show varying degrees of success depending on the class of drug used, the level and duration administered; not to mention what those literate in this disease clearly know to be frequently occurring and complicating co-infections, you try all the options and consider new ones as they emerge and evolve.
You do not pull the plug on treatments that are working in progress; nor abandon a patient's basic human right to know all the options - even those less likely to succeed. This is no different than the widely validated approach to giving the patient full autonomy and authority to choose the option (including no treatment at all) in addressing such illnesses as prostate cancer, and many other highly complex diseases.
The American Association of Pediatricians states very clearly:
The more restrictive the guidance.., the more certain the guideline developers and endorsers must be of its correctness. When the evidence is of low quality and the benefit-harm equilibrium is balanced, guideline developers generally should not constrain the clinician's discretion by making a recommendation but instead should designate acceptable alternatives as options. An option means either that the evidence quality that exists is suspect or that ... studies have demonstrated little clear advantage to one approach versus another. 
American Association of Pediatrics (Steering Committee on Quality Improvement and Management), Classifying recommendations for clinical practice guidelines. Pediatrics, 2004. 114(3): p. 874-7.
The important distinction that must be made here is that the IDSA guidelines being exploited by insurers to deny life saving treatments to later-stage, chronically ill infected Lyme patients are outdated and exclude the very scope of disease and disease population being debated in the first place.
In fact, the original 12 members who drafted these now outdated "guidelines" of the IDSA were 12 researchers with limited experience in treating acute, early stage Lyme disease; while having NO EXPERIENCE AT ALL in treating later-stage, chronic Lyme infection. In fact, they never believed in and still do not believe in later-stage, chronic Lyme infection.
ILADS (International Lyme and Associated Disease Society of America), of which Dr. Jemsek is a member, is a multi-disciplinary, worldwide organization of leading experts who have saved tens of thousands of later-stage, chronically Lyme-infected patients where the IDSA one time, short-term, "one size fits all" protocol has overwhelmingly failed. For many, it has cost them their lives, literally.
Both viewpoints - IDSA and ILADS are reflected in peer-reviewed literature. But again, the IDSA's guidelines are both scientifically and clinically exclusionary and outdated; where the ILADS guidelines remain flexible, open-ended and ever evolving as the scientific and clinical scope of this disease is revealed. This is sound, responsible, ethical medical care. It is the moral, legal and ethical responsibility of every state licensing board to protect such an approach.
At present, the majority of later-stage, chronically Lyme-infected patients are being subject to guidelines addressing APPLES; when their scope and stage of disease is a completely different entity - ORANGES.
This is parallel to subjecting full blown diabetics requiring insulin and other more aggressive, but necessary, life saving measures; to a sub-standard, negligent approach to their disease such as dietary changes that might work for Type II diabetics or those proving insulin resistant. We would never do such a thing.
The American Association of Pediatrics also clearly acknowledges that the next best practices in any given disease or speciality is likely decades away from textbooks teaching our next generation of physicians in the university setting; as well as years away from common access or use by mainstream practitioners.
The legal and medical standard of care defers to the treating physician who knows the most about the individual patient and the disease being addressed.
With regard to issues of medical and legal standard of care, let us be clear. As a rule, the medical and legal standards of care demand that the risk / benefit ratio to a patient be the ultimate guiding factor where science is ever evolving and uncertain. (Again, parallel to prostate cancer)
Evidence-based medicine requires ONLY that medicine be practiced in accordance with the evidence that currently exists...ALL the evidence, not just one or the either side; and NOT that treatment be with withheld pending research.
The legal standard of care for treating a condition is determined by the consensus of physicians who ACTUALLY TREAT patients, i.e. ILADS "hands on" clinical experts; not IDSA physicians whose very guidelines are based upon the belief later-stage, chronic Lyme infection doesn't even exist. They don't treat it because they don't even acknowledge it as a possible diagnosis.
Furthermore, the legal standard of care does not subject individual patients or the treating physician's objective clinical judgment to restriction of "guidelines", nor internal insurance policies based on economic cost containment strategies.
Antibiotics are the only demonstrated effective form of treatment for Lyme disease; acute or later-stage, chronic persistent Lyme infection. There are no studies supporting the hypothesis that symptoms that persist beyond short-term treatment are an autoimmune response without active infection, while there is a wealth of studies in which the bacteria have been isolated in patients with persistent symptoms post-treatment.
Empiric treatment of infection is well accepted. If a patient presents with infection, responds favorably to antibiotic treatment, relapses when treatment is withdrawn and responds favorably when the treatment is re-instituted, there is empirical evidence of an infectious process. This is not experimental, but the way infection has been treated for years.
When symptoms of Lyme disease persist, antimicrobial treatment is generally followed by clinical improvement. Relapsing disease is obvious to the physician and patient and generally responds to re-institution of therapy.
With regard to IV measures, IV antibiotic treatment has commonly been used for many bacterial infections in addition to Lyme disease. IV antibiotics have been used in the treatment of neurologic Lyme disease for at least 20 years. The position that it is experimental when used to treat Lyme disease, and thus not eligible for coverage, is untenable.
The CDC, itself, states that parental antibiotics are generally recommended for treating meningitis, carditis, later-stage neurologic Lyme disease and complicated Lyme disease arthritis.
Successful treatment of a central nervous system infection is dependent on adequate CSF penetration by the chosen antibiotic, with the goal of achieving greater than minimum bactericidal concentration (MBC) levels for as long as necessary to assure destruction of the bacteria in question.
For neurologic Lyme disease, intravenous antibiotic therapy with ceftriaxone or cefotaxime is the accepted standard because these drugs more effectively penetrate the blood brain barrier.
In the CDC's own words:
"Later disease, particularly with objective neurologic manifestations, may require treatment with intravenous ceftriaxone or penicillin for 4 weeks or more, depending on disease severity. In later disease, treatment failures may occur and re-treatment may be necessary."
As a point of legal reference, it was determined in Mathis v. Morrissey:
* (The) "medical doctor, being the expert, appreciates the risks inherent in the procedure he is prescribing, the risks of a decision not to undergo the treatment, and the probability of a successful outcome of the treatment. But once this information has been disclosed, that aspect of the doctor's expert function is performed. The weighing of these risks against the individual subjective fears and hopes of the patient is not an expert skill.
Such evaluation and decision is a non-medical judgment reserved to the patient alone."
Insurance companies are not permitted to abrogate patient autonomy by choosing the most economically appealing treatment option where two standards of care exist. That choice belongs to the patient, who alone bears the risks and burdens of the medical decision.
The AMA requires physicians disclose and discuss the risks and benefits of the proposed treatment as well as alternative treatments (REGARDLESS of cost or the extent to which the treatment options are covered by health insurance).
Without adequate information about treatment options, their probable outcomes, and the risks and benefits associated with each, patients cannot act autonomously or give informed consent.
The CDC acknowledges the number of new Lyme-infected patients is likely ten times higher than reported or counted. As of three years ago, that would put the number of newly-Lyme infected patients at nearly a quarter of a million people; 5 times the number of newly-infected AIDS patients. And yet, this disease receives 100 times less funding for research. Later-stage, chronic Lyme infection and its multi-system complications both disables and kills.
An ever dwindling, handful of world leading Lyme literate specialist such as Dr. Joseph Jemsek have repeatedly risked their licenses and their livelihoods to save tens of thousands of later-stage, chronically Lyme-infected patients from around the world. Those saved lives continue to mount as IDSA-minded, misinformed practitioners and those with financial ties to insurers and their bonus structures focused on NOT treating this highly advanced stage of Lyme disease continue to neglect and defraud the Lyme community nationwide.
But just as importantly, state licensing boards are failing to uphold their inherent legal and moral responsibility to protect patients in the United States by assuring that the best standard of care available at any given time within every area of medicine, is accessible, offered and provided them no matter what the cost. Anything short of this is medical negligence and fraud.
We have an epidemic disease quickly unfolding in the United States that has proven to cause birth defects and death of the fetus in pregnant women with active Lyme disease; to survive blood bank conditions; and is highly suspected to be sexually transmitted. The hosts carrying Lyme-infected ticks and other newly discovered transmitting agents (i.e. mosquitoes, biting flies, etc.) are expanding everyday as is our proximity to this disease becoming a daily risk as it is now on our beaches, in our backyards and along our everyday travels.
The scope of this disease continues to be revealed as does the virulence of any number of strains continue to prove increasingly adaptive, mutational, and resistant to even the latest, best protocols of treatments.
This is a pandemic public health threat being dismissed and covered up as a political agenda.
State licensing boards would serve the public far better by protecting the few physicians capable of unraveling the ever-evolving, convoluted realm of manifestations later-stage, chronic Lyme infection has proven to render, and saving their punitive measures for insurance companies using clearly medically negligent and fraudulent tactics such as formulary cost restrictions, off-label requirements and restrictions, as well as step-therapy to withhold, deny and pull life saving treatments from later-stage Lyme patients who continue to suffer permanent disability and even death from such criminal measures.
(See the outline provided for in-depth explanations and details of how insurers are defrauding insurance paying consumers.)
State licensing boards, particularly in the southeastern United States, would be far better served to protect the few physicians capable of diagnosing and treating later-stage Lyme infection sooner and cheaper, to contain this disease before we infect anymore of the blood supply we will increasingly need with the predicted worsening storm seasons to come.
Dr. Joseph Jemsek is administering individualized, responsible and often intensive treatments to patients who are at risk for being permanently disabled, blinded and even in danger of dying.
I was fortunate enough to be cared for by such a compassionate, knowledgeable, morally and ethically responsible physician after being bedridden for two years by previous neglect and ignorance. That aggressive, open-ended treatment took me from a bed to running a 10K, working full-time and paying my taxes and my insurance premiums again; not to mention drafting and filing the first ever Lyme disease legislation in the history of Florida in less than six months.
State licensing boards and our healthcare industry, in general, need to think very seriously about what they will do when there are no more licensed Lyme treating physicians around who know later-stage, chronic Lyme disease and its myriad of mimicking presentations well enough to diagnose their loved ones.
All concerned should think about what they will do when even the richest of bank accounts can't buy the class of drugs necessary to effectively address any number of the various forms of this disease organism or knowledge in the nuisances of what works for some and not for others.
Money can't buy the doctors or knowledge that no longer exists.
Misinformation is a dangerous, but effective tool for those who have chosen to perpetuate dogma and ignorance to neglect a growing, sicker population of later-stage, chronic Lyme-infected patients across this nation.
If the IDSA and its supporters who are at the root of the witch hunts that have led Dr. Jemsek sitting before you are so sure they have the right answer, why won't they sit down at the table and present the evidence that their counterparts - Lyme literate doc's continue to offer up? Again, because they have no proof, only outdated, exclusionary rhetoric.
As members of North Carolina's State Licensing Board, you better think seriously about the dwindling number of doctors that exist who are capable of unraveling a disease that renders multi-system manifestations leading most doctors down any number of the wrong roads, to the wrong diagnosis, the wrong medications and the loss of lives, literally.
It would serve our country well for patients and non-infected persons (including members of this board today) to seek out the full scope of evidence before this inevitable, epidemic disease finds its way into your backyards.
Dr. Jemsek has saved countless lives that his predecessors laughed at, dismissed or simply didn't care to properly treat because it took time and cost money that meant trading the HMO year-end bonuses for staying in the five-minute window of profit.
He has honored his oath where his predecessors have been nothing short of negligent and fraudulent. The North Carolina State Licensing Board and American citizens, at large, would be well served to fight for this man's license and livelihood to be protected and celebrated as the truest form of an ethical, moral physician and caregiver.
Founder and Director
Florida Lyme Advocacy
31 N. 3rd Street, Floor Up, B,
Fernandina Beach, FL 32034
904-491-7617 / firstname.lastname@example.org