Andjela H. Kaur

I get that millions of people in the United States have grown a dislike for health insurance companies. After all, as the director of the Consumer Financial Protection Bureau, a government agency “dedicated to making sure you are treated fairly by banks, lenders, and other financial institutions,” noted in May: “43 million consumers had medical bills on their credit reports, and…all together American families owed around $88 billion in medical bills.” In one sentence he sums up the alarming consequences of this enormous collective debt: “The contagion of medical debt affects people’s ability to access affordable credit, find quality housing, or even obtain a job.” This sentence encapsulates the fear many of us have. It represents the horror behind the thought that we may lose the fundamentals of our livelihoods on the account of trying to live a healthy life. 

Like millions of folks affected by such indebtedness and their allies, I too have hard feelings about this statistic. I often dwell on the well-established fact that a large fraction of bankruptcy filings in the United States are precipitated by personal debts to the medical industry. This post does not add to that discussion since these statistics gain nothing from another personal story. Also, it is not my intention to debate whether this disproportionate source of debt originates in the high costs of medical services or in the uncertain commitments of insurance companies to paying medical and pharmaceutical claims.

Instead, I want to revisit this familiar story of going into debt by taking us a few steps back, to a moment before one faces the possibility of becoming indebted as a result of receiving medical treatment. I call this the (modern) debtors’ prison waiting room: a spot in spacetime where one awaits the decision from their insurance company regarding undergoing “step-therapy.”

What I know about this little-known place, I’ve learned from personal experience. I’ve been trying actively to negotiate treatments with my doctors for over 20 years. Over the last decade in particular, I gained a lot of experience with complimentary, alternative, traditional, and unconventional treatments. Partly because of the versatility of these approaches and partly due to the pace at which the disease has been settling in my body, I have been able to avoid expensive medical treatments for a long time. But the moment has come, after living with Crohn’s for 25 years, when I have to consider therapies that require significantly more engagement with health insurance companies. The time has come for me to face step-therapy. 

The Patient Access Collaborative, one of several anti-step-therapy advocacy groups in the U.S., gives an apt description: it is a conditional treatment approval which “requires patients to try one or more medications specified by the insurance company—typically a generic or lower cost medicine—to treat a health condition. Patients must then fail on the medication(s) before allowing a ‘step up’ to another medicine that may be more expensive.” In other words, patients must first take the less expensive drug until the insurance company is satisfied that the patient cannot get by without the drug prescribed by their doctor. Step-therapy has always existed, but it has become particularly popular with insurers in the past two decades because of the advent of the expensive drugs called “biologics.”

My gastroenterologist first offered me biologics as a therapy for my then-moderate Crohn’s 15 years ago. He explained then that active ingredients in these medications were live organisms such as cells. Today the definition of biologics is more complex. The FDA explains that they are pharmaceutical compounds of “sugars, proteins, or nucleic acids or complex combinations of these substances, or may be living entities such as cells and tissues.” This broad definition makes it clear that biologic medication could be any well-engineered chemical composite that the FDA approves for treating a specific condition.

Beyond the technicalities and methods of biomedical engineering and FDA rules and regulations, this group of medicines has also been known as a very expensive treatment. There are many theories about why the high price persists. They range from the familiar explanation that biomedical innovation is itself expensive (e.g. experiments take time and experimental procedures are costly) to propositions that the drug approval process takes time and money (e.g. control group studies are demanding). In addition, there are suggestions that the handling and administration of the medication is driving up the costs (e.g. many biologics have to be administered at infusion centers). Or it could be the complexities of the politics and economics of patent management in the U.S. (e.g. inexplicably low uptake of biosimilars by the U.S. drug market).

It would be too cynical to dismiss any or all of these possible explanations outright. At the same time, it has to be said: despite the technological advances that enable their innovation and production and the streamlining of the FDA approval process (e.g., emergency approvals and similarity-based fast-track procedures), these medicines remain expensive. So, we have no reason to believe that the cost of treatment will soon or spontaneously go down. This is how the talk of “step-therapy” starts.

Citing the burden and the seeming perpetuity of the high cost of biologics, insurance companies have, for the past 20 years, increasingly implemented step-therapy as a cost-cutting measure built into the preauthorized treatment for irritable bowel disease, some skin conditions, certain types of cancers, and rheumatoid arthritis.

To use the term “therapy” here is rather misleading because the first drug allowed by the insurer most often is not the one the patient’s doctor prescribed as the preferred—most likely effective—treatment for their illness. Insurance companies use the word “therapy” to suggest the possibility that a cheaper medicine may have some therapeutic effect on the patient, even if their doctor prescribed a treatment more likely, in their expert opinion, to have better outcomes for the patient.

It’s only if the required, cheaper, treatment fails to deliver any improvement (or it causes severe reactions and side effects) that the insurance company allows another treatment option to be attempted. Following failure of one medicine, the patient is permitted to use the next on the list of medicines approved by the FDA and sorted by price, from least to most expensive. Sometimes this list is very long. While the insurance company controls its expenses, finesses its profit margins, and maintains the high prices of medicines, the patient experiences another form of perpetuity: that of a treatment failure and increasing medical debt.

Now, I am not there yet. And it’s unclear if I will face such perpetual failure. I’m still awaiting the insurance company’s prescription for the course of my therapy. I am yet to be admitted to the army of medically-indebted residents across the U.S.

As I weigh my options, imagine possible outcomes, curb my hopes and fears, and try to avoid future disappointments, many questions are racing through my head. Will I have the honor of passing by the horrors of step-therapy? Where on the list do I begin to accumulate my medical debt? Could I be lucky enough to avoid having experiences like many others whose conditions worsened as they were going through the motions of step-therapy? Or will my body, like theirs, be used as a laboratory for cost-saving maneuvers that maximize profits for insurance companies? Oh, wouldn’t it be nice to skip to the front of the line and embrace the opportunity to grow my medical debt right away without added pain and suffering?

I’ve been in this antechamber of the debtors’ prison for two weeks now. A fortnight ago, I responsibly supplied my doctor’s office with all medical tests required for the application for treatment preauthorization. Subsequently, I responded to several calls from the hard-working nurse whose sole job is to arrange the paperwork needed for pre-approval and to submit pre-authorization applications to insurance companies.

As I met all the medical requirements for what my doc and I agreed would be the best available treatment for my kind (phenotype) of Crohn’s Disease, two Mondays ago the kind nurse submitted my application for approval of my first-ever biologic treatment. She called me to confirm that the application went through.

Recognizing that I was admitted into the waiting room, I instinctively asked, “How long is the wait?” “Let’s see what insurance you have,” she said. She was quiet for a moment as she shuffled through her notes, and then she enthusiastically exclaimed, “Okay good! They don’t take that long, maybe a week or two.” Next, she cautioned, “Keep in mind that it’s the summer and people are on vacation, so give it a bit more time.” I was silently doing the math: “One or two plus x is…what exactly?” Ah, yet another flare of perpetuity.

We enter waiting rooms with an array of anticipatory feelings. We may feel excited to begin a restorative treatment we have been waiting for. We may feel impatient to get it over with. Or we may look forward to all the things we are going to learn from the new experience. In any case, we lose sleep and our quality of life decreases. Waiting rarely brings about tranquility. Resolution comes when the wait is over. But what to expect from perpetuity?

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