Lorraine, a multiple myeloma patient, was being denied by her insurance company the medication prescribed by her doctor. A worker at the clinic where she was being treated called Lorraine’s PBM to sort the matter out. She got through to a company representative and began reviewing the situation until, at some point, the call was disconnected. Upon calling back, the worker had to start all over from the beginning with a different customer service representative.

A few days later, she called the PBM a third time, reaching yet another representative, who seemed unable to understand the situation. The clinic worker asked to speak to a supervisor, yet she turned out to be even more abysmal than the prior three representatives, both in terms of her attitude and her inability to understand the situation. The supervisor transferred the matter over to someone in appeals.

She began by emphasizing the urgency of the matter; the longer it took to get Lorraine her medication, the worse her prognosis.

Now, the clinic worker found herself speaking to a fifth employee of the PBM who became even more aggressive, and questioned the worker’s role in the doctor’s office and her right to be making the call. When the worker began to conference the doctor in, so he could participate in the phone call, the PBM representative hung up on them.

As a last resort, the worker tried reaching someone in the PBM investor relations department, and had the call transferred over to the executive escalation team. She began by emphasizing the urgency of the matter; the longer it took to get Lorraine her medication, the worse her prognosis. She added that their office would be contacting both Medicare and the Insurance Commissioner’s office in Maryland, to complain about the unprofessional handling of the matter with a patient’s life on the line. Within twenty-four hours, there was a case worker assigned to Lorraine’s case, yet no knowledge yet of how long it would be before — or even if — Lorraine would receive authorization for the lifesaving treatment she needed.

Dealing with PBM bureaucracy often feels like being trapped on a merry-go-round with no way off. Every issue is handled by a different person or entity, each with its own agenda and protocols. Patients must wait for weeks or even months, to obtain medication that they could have received within twenty-four hours, had they been permitted to get it at the point of care from their oncologist. These delays often translate into delayed treatment and worsening of the patient’s condition, and in the most tragic of cases, possibly contribute to the patient’s death.

Paula was a very intelligent company executive battling breast cancer. Her oncologist prescribed a particular medication and she faced no issues in having it filled or refilled the first time. When it came time for the second refill, however, she met a PBM roadblock. Despite several calls to the PBM, and speaking with several different people, all the patient could get them to explain was that there were insurmountable “insurance issues.” Not knowing what else to do, she came into the oncologist’s office so they could call the PBM together to resolve the matter.

The patient had already gone 10 days off of her regimen, something which never should have happened.

After a long wait on hold, the doctor and his patient finally reached a representative who informed them that they were unable to fill the prescription because it could have a negative interaction with another medicine she was currently taking. The doctor and the woman looked at each other for a moment, before asking the rep, “What medicine?” The patient was not taking any other medication. This was, however, not what the PBM had in their records. It took quite a bit of additional convincing by the patient and her doctor before the PBM would believe them, and agree to provide authorization.

By this point, due to clerical error and the absence of anyone to take responsibility, the patient had already gone 10 days off of her regimen, something which never should have happened.

Practices report that they spend an absolutely ‘ridiculous’ amount of time trying to obtain prior authorizations from PBMs – well beyond any reasonable expectancy. Even getting to the point where there is another human being on the other end of the phone to talk to is an achievement in and of itself. This, of course, is only the beginning of the PBM process that is fraught with errors and poor record keeping, all of which can add up to dozens of hours of staff time wasted dealing with bureaucracy, and drag on over days, weeks, even months. In the meantime, patients with cancer are left waiting without the treatment that they need.

The pharmacist of an in-house clinic at a community oncology practice was going over patient files one day when the phone rang.

The caller politely introduced herself as an employee of a well-known PBM specialty pharmacy, and then abandoned all niceties as she proceeded to ask why the pharmacist was filling a prescription for a patient that by all rights belonged to them. The in-house pharmacist pulled up the file for the patient in question, who was battling advanced stage ovarian cancer. Not seeing any conflict of interest, he requested further details.

“Did the patient’s physician intentionally send the script to you?” she asked, to which the pharmacist replied, “Of course he did. Our pharmacy is located inside of the practice.”

In clipped tones, the caller explained that his filling of this script was “outside of the manufacturer’s contract, and illegal.” Unfazed, the pharmacist responded by saying that there was no law preventing them from filling it. At this point, realizing that her strong-arm tactics were getting her nowhere with the pharmacist, she changed tactics; perhaps the doctor would be an easier target. “Did the patient’s physician intentionally send the script to you?” she asked, to which the pharmacist replied, “Of course he did. Our pharmacy is located inside of the practice.”

With no wiggle room left, the caller said that she would be informing the patient of all this, and abruptly ended the call. The pharmacist was left to marvel at the audacity of trying to intimidate him into handing over a patient – and the corporation that clearly couldn’t care less about what was best for her.

When that corporation’s income is derived from ‘trolling’ the system to collect more profit-generating patients receiving treatment for life-threatening ailments, we realize things have gone way too far. At some point, something must be done to rectify the perverse profit- motives and incentives behind the corporate PBM approach patient care.

Belinda, a kindergarten teacher and mother of two, was fighting thyroid cancer. Her oncologist had her on a particular medication that was approved for off-label use on thyroid cancer; she’d been taking the medication for seven months and was doing well.

In January, Belinda’s insurance carrier moved to a new PBM, which required her to fill her prescriptions at their mandated specialty pharmacy. They assured Belinda that it would be no trouble for them to continue filling her medication. So, that same month, when it came time for Belinda’s refill, her oncologist sent the e-prescription directly to the new pharmacy, and called Belinda to confirm.

When Belinda tried to pick up the prescription, however, the PBM-mandated pharmacy said they were unable to process it “at that time.” She waited an entire month before being contacted by the PBM pharmacy to verify benefits and schedule delivery. After another week went by with no medication, a very frustrated Belinda called her oncologist to see if they could dispense the medication directly to her. Unfortunately, according to Belinda’s insurance policy, they were not allowed to do that.

Another week passed, and, after six weeks of delays, the PBM-mandated pharmacy contacted Belinda. They wanted now to schedule delivery – again. The prescription was then sent to PBM’s Clinical department to verify dose, diagnosis, allergies, and drug interactions.

Had Belinda been authorized to purchase her medicine from the in-house pharmacy at her doctor’s office, the entire process would have taken a single day.

At this stage, someone at the PBM finally noticed that the drug was being prescribed for an off-label usage, and called her oncologist to verify the diagnosis. The oncologist spoke to the PBM pharmacist, explaining that the drug had been approved for nearly a year, with the patient taking it all that time, to very beneficial results. It had always been for off-label usage, and the insurance company had always agreed to it. What was the matter?

The PBM pharmacist had no explanation for the time lag, nor was there any documentation to explain why more than two months had passed. At the end of the conversation, the doctor asked if Belinda could finally expect to receive her medication now. “No,” the pharmacist replied. “Now, we forward the matter to the payment verification center. After that stage, it will be forwarded to the dispensing center. Then we can ship it out.”

Had Belinda been authorized to purchase her medicine from the in-house pharmacy at her doctor’s office, the entire process would have taken a single day.

The larger an organization, the more complex the bureaucratic procedures. This is often done under the guise of ensuring safety. However, how far do things need to go before it can be said that the harm to patients has greatly surpassed any intended good? At what point do the PBMs themselves become accountable to a certain standard of care–even in terms of something as simple as response time?

In the Fall of 2012, Trisha, a medical software instructor in her early 60s, suffered renal failure and was rushed to the hospital. Diagnosed with Multiple Myeloma, she underwent dialysis and was referred, by her community oncologist, to a Myeloma specialist at the nearby hospital system. The specialist recommended a particular regimen of chemotherapy to keep the disease in check, and Trisha was released.

A few months later, tests revealed that the cancer was progressing. Her chemo was clearly not working; a new medication had to be tried. This would not be simple, for following Trisha’s renal failure, her kidneys had never returned to normal. This meant her doctors had to be extremely careful about what drugs they prescribed, as certain medications for Myeloma are known to take a heavy toll on the kidneys.

Ultimately, after more than two months of delay, the correct medicine was finally approved by the PBM.

Trisha’s oncologist, in consultation with the hospital specialist, decided to prescribe a particular drug that could slow the progression of her disease, without having any adverse effects on her already stressed kidneys. Her oncologist sent in the prescription to the PBM mandated specialty pharmacy, which promptly sent back a notice denying the request.

At first, the pharmacy said that prior authorization was needed. Her doctor said, “No problem,” and instructed the in-house clinic to fill out all the necessary forms and fax them over. This was followed by a second denial, which stated that the patient did not meet “the proper requirements” to receive the requested drug. What were those requirements? Trisha had to first have tried two other drugs, one after the other, and to prove that either her body had been unable to tolerate them, or that they had failed to slow the cancer’s advancement.

Of those two drugs that the PBM demanded Trisha try – and fail – first, one was the very same drug she had been prescribed the previous year that had already failed to slow the cancer’s progression. The second was a medication that, had she taken it, would have seriously damaged her kidneys and likely put her back into renal failure.

Over the next two months, Trisha’s oncologist appealed the PBM’s decision, and a long series of communications ensued between the oncologist, the Multiple Myeloma specialist, and the PBM specialty pharmacy. Trisha, meanwhile, watched with increasing anxiety as her myeloma protein markers quadrupled, indicating that the cancer was gaining ground. The appeal turned into a letter of medical necessity, and ultimately, after more than two months of delay, the correct medicine was finally approved by the PBM.

PBMs have been given enormous amounts of control over what doctors may and may not prescribe. They try to strong-arm doctors into prescribing the medicine that the PBMs choose, even though they have never met the patient, and often have no medical background to support the decisions they are making.

Diagnosed with hemophilia, 15-year old Jason had to simultaneously contend with his blood’s inability to form clots and the danger of bleeding uncontrollably. Jason’s oncologist had him on a once-daily oral medication that can slow the spread of his disease by blocking a specific protein the disease needs to thrive.

One day, Jason missed his footing on the stairs at home. Falling, he hit his thigh and developed a significant hematoma, common with hemophiliacs. He now urgently needed a specific recombinant factor injection to help his blood clot, and quickly.

Jason’s oncologist quickly prescribed the necessary self-injected medication to be taken at home. Prior authorization was received, however the PBM handling Jason’s case refused to allow the practice’s pharmacy to fill the script, so they forwarded it to the PBM-mandated pharmacy. Unfortunately, they could not fill the prescription, and without informing Jason or his doctor, they outsourced the prescription to yet another pharmacy.

Recognizing the urgency of the situation, Jason’s mother, a full-time nurse, stepped in to see how things could be expedited. She made numerous phone calls, verifying that the pharmacy she used to work with before her insurance changed had the medication in stock and, due to a contract with the PBM, was able and willing to ship it out the next day. Not wanting to lose out on the business, the original PBM-mandated pharmacy stepped in and vetoed the plan, stating that as it had already been ordered from them, there could be no cancellations.

With no alternative, the doctor sent Jason to the hospital emergency department to receive the necessary injection.

Adding another layer of unnecessary problems to the mix, the PBM suddenly claimed that there had been no prior authorization filed for the prescription. Undeterred, the practice pharmacist spent hours trying to get it all done as soon as possible, so that Jason could get the medicine he needed.

Finally, just when it felt like the situation was starting to be resolved, the PBM pharmacy representative on the phone belatedly realized that the medication in question was for injection and stopped the process. Prescriptions for injections, she said, had to go through a different department. Unfortunately, it was now 5 p.m. on a Friday and the PBM offices were closed for the weekend, so they would have to wait to submit the prescription until Monday. Because of his hemophilia, young Jason was now in danger of developing a dangerous complication that could require emergency surgery and a long hospital stay if not treated immediately.

With no alternative, the doctor sent Jason to the hospital emergency department to receive the necessary injection. While this prevented any life-threatening occurrences, it incurred an enormous expense for his family and insurer, one that could easily have been avoided. Due to the astonishing bureaucracy, a patient fell through the cracks, with no one outside his personal doctor standing up to take responsibility or showing the slightest concern.

Patients do not walk off the pages of a textbook or an encyclopedia of illnesses and their recommended treatment. Each case is individual and ought to be treated as such, in a thoughtful, intelligent, holistic manner. Additionally, patients do not stop treatment just because it is the weekend or after the phone lines shut down. The more control PBMs are given over patient care, the more sweeping and infuriating their bureaucracies become, and, ultimately, the more dangerous their decisions and actions prove to be.

Gordon, a retired FBI agent with a distinguished record of security service on behalf of the United States, was diagnosed with an aggressive form of lung cancer. Proving resistant to the drug regimen his oncologist initially prescribed, the cancer metastasized to his brain, and he was immediately started on radiation therapy. It was at that point that his doctors made an important discovery: Gordon’s cancer had the EGFR mutation, which indicated he would do better with oral medication than infusion chemotherapy. More importantly, there was a new drug that had just been approved by the FDA as the first-line treatment for EGFR-mutated non-small cell lung cancer. This gave Gordon and his cancer care team a window of hope.

Gordon’s oncologist prescribed the new medication, but the PBM denied authorization, providing the name of an alternative drug they wanted him to try first. His doctor argued that his original prescription would be better for the patient; It had been shown to have far higher efficacy for patients whose cancer had metastasized to the brain. The PBM argued back that it had been initially approved for a different EGFR mutation than the one Gordon had. His doctor argued back that this was irrelevant, as it was effective for Gordon’s mutation as well, and was now FDA approved.

After more than 30 days of wasted time, the PBM approved the doctor’s original prescription.

Back and forth, the fight went on for an entire month, with the doctor providing data and rationale to support his clinical decision making. Meanwhile the cancer grew inside Gordon, unchecked. He began to feel increasingly fatigued, and a man who had remained very active throughout his cancer battle began to deteriorate.

Ultimately, after more than 30 days of wasted time, the PBM approved the doctor’s original prescription. Upon beginning the regimen, Gordon’s condition began to slowly improve, but it never should have been allowed to reach such a low state.

Again and again, we see PBMs playing doctor, choosing to authorize one medication and not another, for reasons that have nothing to do with patient care. From pushing the drugs from pharmaceutical companies with which they have made sweetheart deals, to demanding patients be prescribed lower-cost medication, their actions are profit-driven and often in complete contradiction to what the patient actually needs to get well.

After having survived her battle with thymus cancer in 2015, Rachel was surviving with several autoimmune disorders, including myasthenia gravis, a condition in which the body attacks its own neuromuscular connections. After utilizing several immunosuppressants, Rachel has managed to keep the illness in remission for the past two years, by taking a wonder drug that works as an immunosuppressant, maintaining a low volume of antibodies in her system.

An advanced oncology certified nurse at a community oncology clinic, Rachel knows her condition well and how to stay healthy. For two years she has been taking her medication faithfully every day, working to care for her patients, and living life as normally as could be.

Then, at the beginning of 2019, her employer changed insurance carriers. When it came time one Friday for Rachel to refill her meds, she went to the local pharmacy to pick them up, only to be told that there were ‘issues.’ The pharmacist was confused and said he would look into it.

Two hours later, the pharmacist called to say that from now on, Rachel must obtain her medication through the PBM’s specialty pharmacy. She immediately called the new pharmacy’s number, where she waited a long time until she was connected. After trying fruitlessly to locate Rachel in the system, he put her on hold for ten minutes. When someone else finally came back online, Rachel had to tell her entire story from the beginning. This happened several times, with Rachel’s blood pressure rising exponentially. It was Friday afternoon, and she had six pills left – enough for two days.

Rachel hung up the phone; this had been a dead end. Falling back on a trick she had learned after dealing with countless PBM bureaucracies on behalf of patients, Rachel called the member services number on the back of her insurance card. After being passed around from representative to representative, she reached “Brian,” who promised to establish a new member’s account for her. However, as to her refills, he insisted he first needed to call her doctor to get prior auth.

It was Friday afternoon, and she had six pills left – enough for two days.

Rachel began to see red. It was Friday afternoon, and her neurologist’s office was closed. Trying to remain calm, Rachel explained to Brian that she still had several refills left. Brian promised he would contact her pharmacy and have the refills transferred over. “Call me in the morning,” he said. Saturday morning, at 7:30 am, she called the specialty pharmacy, where she was told that no one named Brian had been in touch, and there was nothing in the computer about her issues. However, this new representative was the real deal. She handled everything over the next few hours, and arranged for the meds to arrive by Monday – which they finally did – just as Rachel’s pills had run out.

Infinite patience coupled with buckets of determination and self control seem to be de rigueur when it comes to dealing with PBM Specialty Pharmacy bureaucracies holding one’s life-saving medicine hostage. If it was this difficult for a seasoned, tough-as-nails advanced oncology nurse to get her own meds, what is going to happen to the other 99.9% of the population?

Brian, a married social worker with two young children, was in his early 30s in February 2014, when he was diagnosed with a relatively rare form of cancer in his appendix. Brian underwent surgery and chemo at a large hospital system, and for the next few years, his life went back to normal.

Brian’s once promising prognosis has been replaced by one far more dire. In effect, Brian missed his very narrow window and it is likely that he will never get well again.

In late 2017, however, Brian suffered a relapse. He underwent surgery to remove all traces of the cancer, and his oncologist followed up with a round of chemotherapy. Despite the metastasis, Brian’s doctors thought he had a good chance at survival, and recommended that he immediately begin a six-month regimen of oral medication to help keep the cancer at bay. He was young, strong, and had everything to live for; they were optimistic the cancer might never return.

On February 8th, Brian’s oncologist sent a prescription for the pills to the local pharmacy his clinic worked with. They informed him that while they had the medicine in stock, Brian’s insurance and PBM prohibited them from filling the prescription. Instead, they forwarded the prescription to a PBM-mandated specialty pharmacy to receive prior authorization.

The PBM-mandated specialty pharmacy granted the prior authorization, but was also unable to fill the prescription, so it was forwarded to yet another PBM specialty pharmacy. By this point, 11 days had passed. After another few days of silence, the second PBM pharmacy sent a message that they were unable to fill the prescription; it had to be done by the first PBM specialty pharmacy. It seemed that no one really knew who was responsible or able to fill the script.

On February 23rd, the same day that Brian finally received his oral anti-cancer medications, he was rushed to the emergency room for severe pains in his abdomen. There they discovered he had contracted an infection that necessitated surgery to repair his abdominal wall. The pills in his hand were no longer relevant.

Today, Brian must remain on chronic antimicrobial therapy pills to ward away abdominal infection; should he stop, they might easily return. Unfortunately, this precludes any further chemotherapy, and Brian’s once promising prognosis has been replaced by one far direr. In effect, Brian missed his very narrow window and it is likely that he will never get well again.

Oncologists are on the front lines treating patients with cancer who have complex needs–they know the exact state of their patients, and how very precious even a day can be. PBMs and their mandated specialty pharmacies are several times removed from the exam room, and as a result, their lack of urgency and inability to cut through bureaucratic red tape can easily become an indirect–or even direct–cause of patient suffering.

In 2012, a 45-year-old salesman named Bill was diagnosed with colorectal cancer. Bill had a good job working for a large office supply manufacturer based in the Midwest, a loving wife and two small children, and he decided to fight with everything he had. Following surgery, Bill was treated with IV chemotherapy, but with negligible results. The cancer progressed over the next year, and his doctor changed to a different IV chemotherapy. This time his response was very good, and for the next four years things were fairly quiet.

In 2017, tests showed that Bill’s cancer was back, and this time he was treated with yet a third kind of IV chemotherapy. His response seemed good at first, but by the following year, the cancer had progressed to Stage IV and metastasized to his liver. At this point, Bill’s oncologist ordered an oral medication specially prescribed for relapsed or metastatic colon and rectal cancers.

Bill’s physician at the community oncology practice sent the prescription over to the in-house pharmacy to fill. Unfortunately, according to Bill’s new insurance plan, his prescription could only be filled by a PBM-mandated pharmacy. Despite the facts that Bill’s Stage IV cancer was aggressive, that his doctor wanted to get him started on the medication that very same day, and that the medication was sitting on the shelf of the in-house pharmacy, Bill had to wait. Even the option sometimes given to have a ‘one-time fill’ that would let him get started while waiting for the PBM pharmacy to mail him his medication was denied. Thus, with the drug’s prohibitive list price (over $10,000/month), Bill had no option but to wait.

The doctor sent his prescription on to the new pharmacy, along with Bill’s contact details, so that they could arrange for delivery. Meanwhile, Bill went to his clinic and received detailed in-person counseling on how to take the drug, since it was a somewhat complicated regimen. There were specific directions on how to take the medication, what side effects to expect, and how to ensure the proper dosing. The latter could be confusing, since the drug is taken in multiple tablets twice daily on days 1-5 and 8-12 of a 28-day cycle.

After seven full days of waiting to start his therapy regimen, Bill finally received his medication in the mail. Opening the box, he began to read the label, and found to his great surprise, that it stated: “take once a day.” Picking up the phone, Bill checked in with his oncologist to report the change in instructions. The clinic pharmacist confirmed that the instructions were wrong, and reached out to the PBM pharmacy, which promised to contact Bill about clearing up the matter.

While he waited, his cancer was allowed to progress, unchecked.

Bill received a call from the PBM-mandated pharmacy representative, who apologized for having sent the wrong prescription with the wrong amount of medication. They assured Bill he would receive an additional supply of medication. First, however, they asked Bill to please return the medication he had been sent, so it could be properly labeled. Now Bill, with Stage IV metastatic cancer and his treatment already having been delayed a week, was being asked that rather than take his life-saving medicine, he ship it back to the warehouse for proper labeling and reshipping.

This was not the last time the PBM pharmacy impacted and delayed Bill’s care. Later, when it came time to refill his medication, Bill’s treatment was again delayed. The PBM pharmacy, it seemed, decided that before filling his prescription, it had to first clarify the dosage. It then claimed to have had difficulties in contacting Bill’s community oncology clinic, despite having been provided with all the correct contact details. Ultimately, Bill had to call his local clinic and ask for the in-house pharmacist to call the PBM to confirm dosage, before they would ship it out. And while he waited, his cancer was allowed to progress, unchecked.

One of the most dangerous parts of PBM-mandated pharmacies is the distance between the pharmacy and patient. In this, we are speaking not only of geographical distance, but also of when patients are forced to wait for medicine to be shipped, rather than walk across a hallway to purchase it. More to the point, however, is the situation in which the patient becomes a name or number on a call sheet, rather than an actual human being facing a life- threatening illness; rather than a patient for whom there is care and endearment. That distance is at the core of many PBM mistakes and apathy.