The Healthcare Apocalypse is Upon Us
Ask any healthcare professional how things are going on the administrative side of things. Every year bureaucrats from the insurance companies, regulatory agencies, and other institutions insinuate themselves more into clinical decision-making.
About 10 years ago I thought we were in trouble when a $5 generic muscle relaxer cyclobenzaprine was denied. A few years later I saw an 85-year-old retired dentist who had signs of a recent stroke. I ordered a stat MRI of the brain—and that was denied.
We have been steadily moving to a place where the health of our citizens doesn’t really matter that much, at least not relative to the profit-driven middleman—entities with no clinical background trying to save themselves money. Every day, in every medical office in America, support staff scramble to handle denials and prior authorizations.
I am going to review a case that demonstrates how far things have gone down the rabbit hole.
- For over a year, I’ve been seeing Ken, a now 58-year-male with early onset Alzheimer’s disease. I have been trying my best to sort out how something like this could have happened. He has a variant of the ApoE4 gene that puts him at increased risk, but that anomaly is not a good enough explanation by itself. Genetic variation is not our destiny.
- The story potentially starts when Ken developed an abrupt onset of high blood sugars in his early 30s. Before that, he was a vigorous, athletic man with no significant chronic health problems other than a tic disorder from childhood. After some evaluation, it was determined that he had latent autoimmune diabetes and was started on daily insulin.
- Just before he was fifty years old, Ken starting noticing cognitive changes. Based on a record review, his first complaint in this regard was: “He states he was always good with numbers, but finds he has difficulty with basic arithmetic tasks such as adding two 2-digit numbers. Memory may be somewhat impaired as well.”
- Ken saw a neurologist around that time who did a comprehensive assessment. An MRI of the brain was normal. He had labs tests that included those for tertiary syphilis and Lyme disease. Testing was requested also for sleep apnea, but his insurance company back in 2011 wouldn’t cover “the expense of a facility sleep study.”
- Ultimately, the sleep study was approved and Ken was found to have sleep apnea. The CPAP machine was finally approved in December of 2012, nineteen months after the neurologist put in the initial request for the study.
This underlying issue could have been the predominant reason for his cognitive decline and it took that long to get it sorted out. It turned out that sleep apnea wasn’t a major contributor.
- In December of 2012, Ken saw his primary care physician (PCP) who noted: “The patient has read that some infections could be associated with memory loss and wanted to test for such infection.” In the plan from that visit, the PCP noted, “he was already screened for Lyme and syphilis.” [In no way, shape or form was Lyme disease ruled out by the standard basic test done prior to that visit.]
- In March of 2013, Ken saw a second neurologist who noted it was a “complex case” relative to memory problems, weight loss, and “significant tic-like movements that seem predominantly to affect the right side of the body.”
- In June of 2013, he saw a third neurologist who concluded: “I do not believe his subjective memory loss is related to his tics specifically.” [“Subjective memory loss” seems like a passive-aggressive way to say it’s not that big of a deal and the patient is probably exaggerating.]
- Fast forward to 2016 when Ken had a follow-up visit with neurologist #3. Ken told the specialist he could no longer spell (including his own name), with word finding difficulties and other worsening aspects of cognition. The conclusion in the note is that the patient “was extremely fixated on his cognitive inadequacies” and then: “It is my suspicion that he does not have a definable neurological condition and that his complaints are likely to be psychosomatic.” A third MRI of the brain was ordered probably to placate Ken’s wife.
- Later in the spring of 2016, another neurologist documented problems with coordination, dropping things, vision changes, and difficulty “figuring out machines” at home, e.g. he couldn’t figure out how to put batteries in his insulin pump that he had been using for 16 years.
- Neuropsychological testing was done soon after the spring 2016 visit with reports of depression and anxiety. The psychologist recommended a trial of antidepressants. After that, Ken had a lumbar puncture and for the first time was given a diagnosis of early onset Alzheimer’s disease. This diagnosis was less than 6 months after one of the neurologists implied Ken’s issues were some variation of malingering.
- In September 2016, Ken saw a fourth neurologist and then a neuro ophthamologist before going into Boston for a fifth, sixth, and ultimately a seventh Neurology opinion. That year, it was noted for the first time that the patient started having urinary frequency and incontinence with no obvious explanation. He also developed chronic extremity pains and peripheral neuropathy that limited his ability to move and exercise.
- During these extensive evaluations that included 44 office visits [yes I counted them] to more than 15 different providers, his wife was also trying to sort out potential underlying causes. She arranged for a Lyme test from an outside laboratory that came back positive for a Borrelia infection.
Many years ago, a study showed evidence of the Borrelia burgdorferi bacteria in the amyloid plaque in the majority of patients who died with Alzheimer’s disease. It is well established that the amyloid plaque that builds up in the brain for these patients is an antimicrobial response. Some research has linked Alzheimer’s to viruses within the herpes family and other studies support links to a fungal infection in the central nervous system as playing a role.As with most complex conditions, any and all of these infectious agents may be playing a role. Mainstream medicine has not taken much of an interest in sorting out these underlying issues. The bulk of research dollars are dedicated to finding a new, more effective pharmaceutical drug.
Over a 10-year span, Dale Bredesen, MD, the author of The End of Alzheimer’s, reported that the pharmaceutical industry spent over 10 billion dollars pursuing 244 potential drugs for Alzheimer’s. Of those potential drug therapies, 243 failed and one, Namenda, made it to market, but has minimal benefit.
- For Ken, by the time I saw him in the office for the first time, he also had a separate positive test for Bartonella, a bacteria you can get from ticks, fleas, cat bites or cat scratches. The primary questions from the beginning of our relationship was whether Ken had a chronic infection of Borrelia, Bartonella, and/or other infectious agents—and most importantly, what role these chronic infections might be playing in his various health problems.
- We tried many different options over more than six months with not much progress other than a significant improvement in his blood sugar control with a combination of thyroid medications. Ultimately, a decision was made to try IV antibiotics for the high likelihood he had chronic tick-borne infections. It took some finagling, but the insurance company approved the treatment because (fortunately) he had positive lab tests.
- Within 3 weeks of the daily IV Rocephin antibiotic, there were a series of dramatic improvements.
- His chronic pain and peripheral neuropathy symptoms improved so much that he did a 5k with his family.
- His bladder condition improved to such an extent that his bladder scan showed no urinary retention and his urologist cancelled a planned surgery.
- A prominent four-year skin condition I diagnosed as “granuloma annulare” to his back and legs cleared.
- His gastrointestinal symptoms of gas and bloating described as “Irritable Bowel Syndrome” by a gastroenterologist resolved.
- Most interestingly, his insulin requirement decreased by over 50% in that first month.
- In addition to all of those improvements, his chronic tic disorder resolved as well. It is well established that tics can be caused by acute or chronic infections of Streptococcus bacteria (PANDAS) or others including mycoplasma, Borrelia, and Bartonella (PANS).
Overall, this was perhaps the most dramatic series of improvements I’ve seen in such a short time for any patient I’ve managed in almost 25 years in medicine.
- Ken had an intense reaction to his legs toward the end of therapy. It wasn’t a traditional systemic allergic reaction and possibly represented a variation of a Herxheimer response from engorged lymphatic areas that drained from those areas where the bacteria had sequestered.
We had to take a break from treatment and potentially switch to a different IV antibiotic.I was told I needed to contact the insurance company so we could continue the IV antibiotics. Naively, I figured this was just a formality.
The request was denied.
I waited on hold 20-30 minutes during lunch several days in a row trying to get someone on the phone with any authority.
I was denied again.
I was told the next step was a “peer-to-peer” review with a physician who worked for one of the companies managing the process.
Eventually, I got on the phone with a doctor and about 30 seconds into my clinical summary, he told me the request for more antibiotics was denied.
This person, that for whatever reason was not practicing medicine any longer, who had no experience in managing chronic tick-borne infections told me there was no clinical indication for more antibiotics.
- Ken’s wife, at the recommendation of a friend, set up a consult with a local infectious disease specialist. He reviewed the case and then told her that Ken never had Lyme disease and then, in one of the most stunning cases of abject denial in the history of medicine, told her that all of the benefits seen from the IV antibiotics were likely a placebo effect.
- The last step in this enlightening critique of the American health system came when Ken’s wife and I were part of a conference call with the Appeal Committee for the insurance company. Two administrative people with no clinical backgrounds and one doctor would make the determination whether we could continue with the IV treatments.
- The insurance employee doctor had supposedly reviewed Ken’s office notes. He focused on a piece of information that Ken had an antibiotic reaction when he was five years old. Ken’s wife tried to say that the documented penicillin reaction was an anecdotal report from his mother. The physician commented that it seemed like Ken was prone to antibiotic side effects and it seemed he might use this as a pretense for denial. After the call, the head of the group assured us they would have an answer by December 17th.
- On Friday the 20th, we were told that they believed he did have chronic Lyme disease, but denied the final appeal for more treatment.
This is not over.
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Andrew Lenhardt, MD