Debtors’ Prison Waiting Room: Insurance Preauthorization in the Era of Step-Therapy

Illustration of a blue and yellow balancing scale. On the left side is a red heart with white text that reads "health" on it and, on the right side, is a black bag with a gold U.S. dollar sign on it. The illustration has a light blue background.

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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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Getting to The Roots: Why Does Subminimum Wage Persist?

Outdoors. A tree surrounded by green grass is seen from the tree top down to its complex roots. The roots are surrounded by soil because they're all underground.

In 2018, the National Council on Disabilities reported that people with disabilities in the U.S. have decreased chances of finding work. In addition, the report found that disabled workers often work for subminimum wage, low wages, and under substandard employment contracts (i.e. in part-time jobs that offer no chance for advancement or benefits). While there has been some progress towards banning subminimum wage, as several states banned the use of subminimum wages for disabled workers and others are moving in that direction, the problem remains. Job seekers with disabilities continue to struggle to find work and disabled workers’ labor remains largely devalued in the U.S. labor market. This bothers and puzzles me. 

I first learned about subminimum wages as a grad student in rehabilitation counseling. The concept was strange to me as I immigrated to the US from the former Yugoslavia, which did not have such an arrangement. Both disabled, my father and I had been employed at competitive wages all of our lives; I couldn’t help but wonder how this option was even possible.

In a lively class discussion on the value of vocational rehabilitation, we debated the “need” for subminimum wage. Most students argued that people who couldn’t meet the productivity standards of the industry should not be paid the same as those who could. Sadly, only the instructor and I argued the opposite: all workers should be paid the same minimum, if not a living wage. Both sides presented very weak arguments based on purely articulated beliefs, void of any factual or historical evidence. 

I left the class that evening determined to get to the bottom of this problem. I wanted to answer the question: why is subminimum wage justifiable in the US? The search for answers to this and other questions related to employment of disabled workers has driven my academic career since. I found that a look at the historical roots of the ideology that employers, vocational rehabilitation experts, and policy makers have used to justify exploitation of disabled workers may explain why subminimum wages are still in place and what could be done to dismantle them.

The place of disabled workers in the U.S. labor market has been determined for centuries by the belief that people with disabilities should work for something other than wages. Throughout the history of disabled workers’ participation in the labor force, employers and vocational rehabilitation experts purported that what we primarily get in exchange for our labor power is solely the opportunity to work and a chance to pay back the cost of rehabilitation to rehabilitation experts and society.

The idea that disabled workers can and should be compensated in ways other than through fair remuneration originated in the early Industrial era. With the Industrial Revolution underway in 19th century U.S., the insistence that workers adapt their labor to the demands of industrialized production denied many disabled people a chance to work in factories. Machine-centered production lines required that a worker could maneuver their body according to the needs of the machinery.

Jobs were not given to those who could not meet the expectations of fast-paced manufacturing, long working hours, and the levels of physical and mental agility necessary to run a machine. “Feeble mindedness,” “deviancy,” “crippleness,” and similar labels operated interchangeably to mark those temporarily or permanently unemployed to justify their unemployment and resultant confinement to workhouses, prisons, and asylums.

At the same time that they claimed the unemployability of its inhabitants, superintendents of asylums used inmate labor to support their operation. During national work shortages, when their admissions would substantially increase, the institutions expanded to help store surplus labor.

During the time of widespread institutionalization in the 19th and early 20th centuries, inmates worked long hours under the auspices and supervision of institutions dedicated to providing them with vocational training and rehabilitation. Inmates farmed institutional lands, bent over sewing machines to produce home goods for sale, provided nursing care for their fellow inmates, and maintained the facilities that housed them. Sometimes they were “rented out” as farm hands or domestic servants.

The disabled, poor, and “deviant” were publicly regarded as eternally indebted to the private funders and the public authorities that supported the institutions. Those who operated the institutions considered the labor of inmates to be: 1) a product of the process of rehabilitation, 2) repayment of debt to the nation, and  3) a useful contribution to the institutions themselves.

In what we might call a mission statement of Pennsylvania’s Pennhurst State School, an asylum operating from 1908 to 1987, its superintendent wrote in 1926 that the aim of the institution was “to train each and every one of the patients so that they are more useful to themselves and those in charge of them, to eliminate social and other undesirable habits and replace these habits with habits of industry and habits that are socially acceptable.” The managers and funders of asylums often spoke of the therapeutic values that labor had on the inmates and patients. They regarded inmate labor as a path to rehabilitation of the unfortunate and the “deviant.” It also provided significant cost-saving measures for the funders.

Beginning in 1840, the cost of asylum operations shifted from local governments to state governments; in the 1970s, it transferred from the state to the federal government. The argument that rehabilitated labor leads to self-sufficiency was central to the requests for funds put forth by the superintendents to their private funders, local and state authorities, and later to the federal government.

But make no mistake: while they were claiming that the purpose of these businesses was training and rehabilitation, the superintendents had long known that these exploited workers did provide valuable labor. Isaac Newton Kerlin, superintendent of Elwyn Institute, clearly recognized that the asylums were employing disabled people. In 1888, he said that “the gardening, laundering, and cobbling of our feeble-minded employés [sic] find here an exchange which will never be criticized by outside ‘labor unions,’ nor reached by ‘labor legislation.’” Kerlin, thus, recognized both the value of disabled people’s labor for the institutions and the potential for exploitation of disabled workers for the benefits of an ableist society. 

In fact, early policies regulating the use of disabled labor—workmen’s compensation and subminimum wage provisions—exempted institutional labor. Organized labor increasingly disapproved of the enterprise, but never interfered in the business of institutionalized exploitation of disabled workers. The eight-hour day provisions limited exploitation of paid staff, which resulted in the decrease of community placements for disabled workers and an increase of their labor in the institutions. Kerlin had thus correctly predicted the course of history of disabled labor.

For decades, calculations of the value of disabled workers’ labor have not been based on the usual considerations of the financial profits that paid labor provides to employers and the needs of workers. Instead, disabled people have been paid based on the imaginary benefits that the opportunity to work might provide and the costs of their rehabilitation (which is mostly paid by public funds).

Proponents of institutional exploitation of disabled workers have not only introduced the idea that the labor power of disabled workers belongs, at least in part, to institutions, but they have also paved the way for legislation to apply this to non-institutionalized disabled workers as well. During the congressional hearings regarding the Fair Labor Standards Act of 1938 (which made subminimum wage legal),  the idea that there is such a category as  “substandard workers” was endorsed by then Labor Secretary Frances Perkins. She was an influential voice in the creation of the New Deal and the first woman to serve as a cabinet secretary.

Although the phrase was not included in the Act, the idea that some workers should be paid less than minimum wage was legislated. Section 14 of the law, which allowed for sub-wages based on disability, still remains a legal scheme for remuneration of disabled workers at wages below legal minimums.

Despite ongoing advocacy from global disability rights and justice movements, multiple lawsuits addressing the exploitation of disabled workers, and the enactment of WIOA eight years ago, the discriminatory practice remains.  As the fight continues, and yet another bill to abolish subminimum wage is before Congress, the time has come to eradicate centuries-long misconceptions about the value of disabled workers’ labor.

We must finally abandon old ideology that serves as the basis for undervaluing workers with disabilities. The harmful belief that we work for opportunities and paybacks must be eradicated. The opportunity to work alone does not put bread on the table. It is the wages that workers earn that pay the bills. Talking about the past gives us the fortitude to change the future. The roots of exploitative practice are deep and have spread too far for too long. Let’s dig them out!

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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