Mrs. Ellis (a pseudonym) is a 57-year-old woman with a 10-year history of rheumatoid arthritis (RA) and a previous episode of transverse myelitis with residual pain and weakness.
After the patient’s insufficient response to methotrexate (MTX) and upon realizing that tumor necrosis factor inhibitors are relatively contraindicated in demyelinating disease, I wrote a prescription for abatacept (ABA), which could conceivably help both her RA and her transverse myelitis.
Mrs. Ellis was insured by one of the largest payers, who sent me a denial, stating that I had to try adalimumab (ADA) first. Naturally, I promptly reached out to their call center, where I was eventually connected to a customer service representative (CSR):
Dr. S: I am calling because you denied ABA for Mrs. Ellis, who has RA and demyelinating disease.
CSR: But the policy says you have to try [ADA] first.
Dr. S: But it is contraindicated in patients with demyelinating disease and could make her myelitis worse.
CSR: But the policy says you have to try ADA first.
Dr. S: But you’re telling me to give the patient a medication that might make her other disease worse.
CSR: But the policy says you have to try ADA first.
In these situations, all too familiar to physicians today, the term “Kafkaesque” comes to mind (“marked by a senseless, disorienting, often menacing complexity”1). In reading Kafka, one does discover remarkable parallels.
“They’re talking about things of which they don’t have the slightest understanding, anyway. It’s only because of their stupidity that they’re able to be so sure of themselves,” Franz Kafka wrote in his novel The Trial, which was written in 1914-1915 and published in 1925, after his death.2
Dr. S: OK, I’d like to speak to the medical director please.
CSR: I’m sorry, this policy does not allow for peer-to-peer review.
Dr. S: So, you’re telling me I have to give my patient a medication that’s contraindicated and may harm her, and I can’t appeal?
CSR: You can send a letter.
I did send a letter, but it took months for a result.
“Take me to your superior,” Kafka’s protagonist demands of the arresting officers in The Trial.
“As soon as he wants to see you,” said the policeman. “Not before.”2
Even where it is implemented, “peer review” is no guarantee that bureaucracy will not overwhelm good medical care. In a peer-to-peer review for a prescription for belimumab to treat a 70-year-old patient with systemic lupus erythematosus (SLE) and brittle diabetes who was covered by a Medicare Advantage plan, the “peer” (a pharmacist—not a physician, let alone a rheumatologist) said, “You will need to put your patient on prednisone in order to have belimumab approval.”
Dr. A: But the whole point of disease-modifying therapy is to minimize the use of corticosteroids to control SLE. Steroids worsen her glycemic control.
Pharmacist: The package insert says belimumab must only be used in patients receiving standard therapy.
Dr. A: I have documented that she tried and failed MTX, azathioprine, mycophenolate, anifrolumab, and rituximab. She was successfully treated with belimumab monotherapy in the past, before her insurance changed.
Pharmacist: Our review team has determined that cyclophosphamide (CYC) is also standard therapy for SLE, so she must be on CYC before we will approve belimumab.
Dr. A: The package insert says “[Belimumab] has not been studied in combination with other biologics or intravenous CYC. Use of [belimumab] is not recommended in these situations.” Are you asking me to abide by FDA [US Food and Drug Administration] packaging to use the drug in patients receiving standard therapy, but ignore the advice not to use belimumab with CYC? What is the purpose of this policy?
In my mind, this was a rhetorical question, since the obvious purpose of this policy was to improve the payer’s bottom line.
Pharmacist: Our company has a responsibility to control costs through appropriate utilization. You can request an appeal to an administrative law judge if you disagree with this determination.
Healthcare delivery in our country has become a Kafkaesque trial, with anonymous nonclinical administrative personnel “so sure of themselves”2 in directing the personalized medical care that doctors provide to their patients, and frequently overriding the decisions of those clinicians who are actually in the room with the patient.
As Kafka wrote of the court in The Trial, “proceedings are generally kept secret, not only from the public but also from the accused. Only as far as that is possible, of course, but it is possible to a very large extent.”2
One payer was even caught out using artificial intelligence algorithms to deny claims in batches, taking an average of 1.2 seconds to say no. When asked why, the Orwellian reply was that the system “is a simple tool to accelerate physician payments.”3
Healthcare delivery systems tout the importance of shared decision making and best practices in their advertisements, then stymie the optimal care we strive to provide through impassable bureaucratic obstacles created by step-edit and nonmedical switching policies that are clearly designed as purely cost-saving measures. In the fiasco known as modern medical care, the fate of patients now hangs in the scales of judgment that are held by businesspeople, not clinicians. The patients and their physicians are manipulated by rules and regulations that are sometimes distorted intentionally for the commercial benefit of the middlemen.
Kafka wrote much of The Trial while at his “day job” processing claims for workers who had been injured on the job while he was employed at the Workers’ Accident Insurance Institute of the Kingdom of Bohemia. In his 14 years of employment, he rose from assistant to senior secretary and may have learned a great deal about bureaucracy.4
Kafka’s characters have been described as following “a hidden logic that flouts normal everyday logic…. Each character is only an anguished voice, vainly questing for information and understanding of the world and for a way to believe in his own identity and purpose.”5
The writer Ben Marcus, who has criticized the overuse of the adjective “Kafkaesque,” does not see Kafka’s characters in this way. Rather than “vainly questing,” he views them as “heroically striving to break through [a] kind of bleak futility.”6
Almost certainly, the CSR in Mrs. Ellis’ case was just reading a policy, not considering the sociological, political, or medical aspects of the conversation. But in our constant exertions to get the appropriate care for our patients, are we physicians “heroically striving” or merely “vainly questing for information and understanding”?6 Are we in fact mere puppets in a system with our strings being pulled by some judge (The Trial), officer (In the Penal Colony), or authority (The Castle)?
In The Castle, a surveyor is summoned to do some work, only to discover an impenetrable bureaucratic system in which nobody ever meets the people in charge, phone calls are never answered except to terminate in a practical joke, and letters are signed with illegible names and stamped as coming from Department X. This is painfully evocative to almost any physician in public practice today.
Predictably, nothing ends well for Kafka’s protagonists. In The Trial, the innocent defendant is ultimately dragged into the street by officers he does not recognize and knifed to death “like a dog.”2 Kafka did not finish The Castle before he died at age 40 of tuberculosis, but he told his executor that he intended the surveyor to never succeed in penetrating the bureaucracy, but to die trying.
In the case of Mrs. Ellis, hoping for the best, I printed the ADA package insert: “… exercise caution in considering the use of [ADA] in patients with pre-existing or recent-onset central or peripheral nervous system demyelinating disorders.”7 I circled the relevant passage and sent it with a cover letter requesting approval for ABA, noting that there is potential benefit for transverse myelitis in addition to the treatment effect in RA, and sent off the appeal.
Three months later, ABA was approved, prior to which Mrs. Ellis went without effective therapy beyond MTX, which had failed to control her RA. But eventually, we achieved reasonable control of her arthritis.
Through much time-consuming collaboration, the patient with SLE was able to get “free” medicine through an assistance program brokered by a local Area Agency on Aging, although neither her Medicare Advantage plan nor appeals to the pharmacy benefits manager (companies that act as intermediaries between drug manufacturers, drug wholesalers, insurers, and pharmacies)8 that she pays premiums to support were fruitful. She is dramatically improved on belimumab.
This is not what Ben Marcus describes as “bleak futility,”6 because in the end, we often can achieve what our patients need. Perhaps, as a priest tells the accused at one point during The Trial, “the only right thing to do is to learn to deal with the situation as it is.”
Footnotes
FUNDING
The authors declare no funding or support for this work.
COMPETING INTERESTS
The authors declare no conflicts of interest relevant to this article.
ETHICS AND PATIENT CONSENT
Ethics approval and patient consent were not required for this article.
DISCLAIMER
The conversations depicted in this article are uncertified transcripts and should not be relied upon for purposes of verbatim citation. Any errors or inaccuracies are the authors’ own. The perspectives detailed in this article do not reflect the views of the authors’ institutions.
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