Pharmacy Benefits Managers: A Patient's Perspective


The time for my next dose of medication passed. I stared at my hands and feet, and worried. A week went by with no inflammation. Then it happened: a twinge in the night, fingers with an edge of stiffness, and a sharp pang in the shoulder. I awoke the next morning swollen and inflamed. The pain felt especially poignant. It seemed so unnecessary. My new insurance, through a pharmacy benefits manager, denied coverage of a medication I have been stable on for over a year. The timing of a lapse in medication was devastating. I had just moved across the country, purchased a new home, and began a doctoral program. Daily I limped to class, lost in fatigue, shuffling around in my chair fruitlessly trying to find a comfortable position. Boxes remained unpacked in the garage, the house in disarray. Not quite the beginning I had hoped for.

How does something like this happen? The answer, it turns out, reveals startling complexity in insurance coverage for specialty medications and the pros and cons of current efforts to control costs.

The problem

To begin, insurers hire pharmacy benefits managers to reduce spending. The need to reduce expenses on medication is understandable. The costs are exorbitant. My insurer, for instance, calculated that last year (2016) the health benefits plan cost a total of $553 million, of which 22%, or $117 million went to drug spending.1

Specialty medications can slow disease progression and decrease pain and inflammation in rheumatoid arthritis. These can include biologic agents like Humira, Remicade, Orencia, and Enbrel. The technology and science behind these drugs are extraordinary. For many people, though certainly not all, they provide a significant reduction in disease activity. Biologics and other specialty medications also treat HIV, inflammatory bowel disease, hepatitis C, hemophilia, psoriasis, and cancer. They are not without risks, and certainly not without expense. Compared to regular drugs, they require special handling like refrigeration.

Some of the most expensive drugs on the market are specialty drugs. Before insurance, my prescription is $3400 a month. The total costs of specialty drugs according to my insurer has been on the rise (13.6% higher than the previous year). Last year, a third of the drug spending in the plan, $42.7 million dollars, went to specialty medications from only 1.7% of claims.

With the continued increase in costs, efforts to reduce expenditures are unavoidable. Laudable and needed methods are reducing unnecessary procedures or prescriptions, or increasing efficiency in systems of care. The introduction of biosimilars may also reduce costs. However, in some instances, methods of cost reduction can threaten the health and well-being of patients, not to mention the impact on our families, work, and future disease progression.

One method of cost reduction is to deny coverage based on strict prescribing guidelines set by the benefits manager. This can result in some positives. For instance, by limiting the prescription of unnecessary drugs and by providing a check against poor medical practice. This in turn can reduce costs. Yet, it can also come in the form of forcing patients to try and fail certain drugs first (called step therapy, or fail first), whether or not they are what the doctor thinks is best.2 This is a less clear path of benefit. One could claim success for both parties if a patient finds an effective and tolerable drug that is cheaper, without having tried the more expensive drugs. On the other hand, if forced to try and fail a plethora of drugs rather than get an effective one first, then it is economically wasteful, and wasteful in immeasurable and unnecessary human suffering.

In my case, I encountered a slightly greyer version of the prescribing guideline method. As hinted in the opening anecdote, a biologic alone had kept me stable prior to switching insurers. I checked coverage of my medication before switching, and got the green light. Upon receiving the new benefits and trying to fill my prescription, I was denied. The reason for the denial, I came to find, is because I was not taking it alongside methotrexate, a drug used in the treatment of RA for nearly thirty years. Likely, the reason for the guideline is research findings of greater efficacy of biologics in combination therapy. I understand that. The problem is that I failed methotrexate early on in treatment. While on it, I had severe side effects with liver toxicity present in my blood tests.

My previous rheumatologist who had prescribed the treatment appealed my case. The appeal was denied. She escalated the appeal, and was denied a second time. At this point I had been three weeks without medication and in the throes of persistent pain.

I met with my new doctor while the appeal process was taking place, and proposed the obvious solution of just prescribing both. I would do as I pleased with the methotrexate, I said. This placed her in an interesting dilemma of whether or not to write a prescription she knew I would either not fill, or throw away if forced to actually fill, just so I could get the biologic. In considering what to do, she joined the appeal process, and was also denied. In response, both my previous and new doctor jointly filed for the highest-level appeal, which moved my case to a third party outside of the benefits manager.

I received a letter a week later stating that my doctors had won the case. My insurer would cover the drug for the duration of my time on the plan! Relieved, I drove to the specialty pharmacy, picked up the medication, and injected it while sitting in my car in the parking lot. I was desperate.

Fighting to get a known effective medication back into my body was a degrading experience. The physical and mental suffering, needless to say, was totally unnecessary. I am thankful to my doctors for fighting on my behalf and trying as best as they could to manage my pain and symptoms in the interim.


We are people, not data points. I believe only doctors and patients should be involved in the decision-making process. Nonetheless, benefits managers are a reality for many plans. Accordingly, they can reduce costs and pass on savings to enrollees. My insurer reports that the benefits manager saved the plan seven million dollars last year. The beef, is that efforts at cost reduction like those I have outlined do not always favor patient interests and health.

Benefits managers need to include individual needs and case history when they try to reduce costs.  I can see no justification for denying a known to be effective medication covered by my plan. Requiring me to take a previously failed drug that caused severe complications is absurd. Risking my health and putting me through a month of unnecessary suffering in the name of potential cost reduction is wrong. Treat patients like people, not the bottom line.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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