Rhonda, a 55-year-old wife, mother, grandmother, nurse, world traveler and self-described Disney expert had been diagnosed with Her2-negative breast cancer. She was receiving treatment at a local community oncology center. Her physician prescribed treatment and attempted to fill it on the same day at the in-house pharmacy; however, the co-pay was too high for Rhonda’s limited means.

The clinic’s financial assistance coordinator went to bat and, six days later, had secured a co-pay card from the drug manufacturer. Two days later, however, when the practice tried to fill Rhonda’s script, her PBM rejected the use of the co-pay card at the practice pharmacy. Instead, the PBM required the script to go out to its own specialty pharmacy. Not wanting to delay her treatment, the practice quickly faxed the prescription over.

Rhonda never had the opportunity to take the first pill.
After a lengthy hospital stay she was discharged home to hospice.

Another six days passed before the specialty pharmacy notified the clinic that the prescription must first go through the specialty pharmacy connected with the patient’s PBM, regardless of who would ultimately fill it. The clinic staff filled in all the additional forms and handled all new bureaucratic measures, and then proceeded to wait. Three days later, a clinic RN called the specialty pharmacy to ask for an update. The representative who answered told her that all was well, and that no prior authorization would be needed. She then placed her on hold. Ten minutes later, the representative returned, only to say that actually prior authorization was needed. With the greatest of patience, the nurse filled out all the new forms and faxed all relevant records necessary for the prior authorization, over to the specialty pharmacy.

Later that day, the pharmacy contacted the RN to inform her that the prescription had been denied, based on the patient’s Her-2 positive status. The RN again sent the patient’s records to the pharmacy, highlighting the fact that she was, and had always been, since she was first diagnosed Her-2 negative. Two days later, the medicine finally arrived.

All-together, Rhonda’s therapy was delayed 19 days, which, had she been permitted to fill her prescription in-house, would never have happened. In total, the clinic staff spent five hours dealing with red tape.

Worst of all, Rhonda never had the opportunity to take the first pill. The night before the medication arrived at her home, she was hospitalized for complications of her metastatic disease. After a lengthy hospital stay she was discharged home to hospice.

While the physicians caring for Rhonda were busy trying to “march to the beat of the PBM’s drum”, this sweet, young, vibrant woman’s window of opportunity closed. How many other scenarios involving pointless deterioration, hospitalization, and death from PBM incompetence are there? When reflecting on the life and care of the patients, PBMs should not be part of the conversation.

Annabelle, a retired cosmetician and widow, had been diagnosed with Philadelphia chromosome-positive + chronic myeloid leukemia. Her community oncologist tried her out on 180mg of a particular medication, and Annabelle’s response was highly positive. Her blood work showed immediate improvement, and she showed no significant side effects.

The doctor wrote out a prescription for the medication, which according to Annabelle’s PBM had to come from their mandated mail order specialty pharmacy. As the medicine does not come in pills of 180 mg, the prescription clearly stated: one 100 mg tablet and one 80 mg tablet. Nevertheless, over the following months, each time Annabelle had her prescription renewed, she was given either 100 mg or 80 mg – never both. This meant that she was not only taking the wrong dosage, but also her dosage was changing each month, according to the whim of the pharmacy and whoever happened to be filling her prescription.

The PBM specialty pharmacy refused to take the necessary measures to ensure that Annabelle received the proper dosage.

Annabelle did not do well with the incorrect dosing; her laboratory results showed dangerous levels in her blood work, again.

Despite the clinic’s repeated attempts to get the PBM to deliver the right medication, the PBM specialty pharmacy refused to take the necessary measures to ensure that Annabelle received the proper dosage. When the doctor tried to have the script filled in the in-house pharmacy at his clinic, it was denied. Meanwhile, Annabelle continues to be improperly dosed, impacting her opportunity for remission.

This story exemplifies the constant dangers patients are in at the hands of incompetent, faceless PBM pharmacy workers. Removed several times from the patients they are meant to serve, their inattention to crucial detail is not what we should expect from a company in the business of caring for patient lives.

James, a third-grade teacher in his early 40s, has lived with leukemia for many years, keeping it in remission with a daily oral medication. In November, his insurance provider notified James’doctor that a new prior authorization was required to continue receiving his medication. There was no time to lose; James had just finished his last bottle and needed an immediate refill. The authorization was immediately obtained, and the clinic forwarded it on to the PBM-mandated specialty pharmacy.

Four weeks went by, yet no medication arrived. Brenda, a clinic worker, contacted the specialty pharmacy, and a voice on the other end stated that a new prior authorization was needed. Confused, Brenda again faxed the approval letter to the pharmacy, while continuing to wait on hold. After a considerable wait, the pharmacy worker came back on the line and told Brenda that this letter was already in the patient’s file, but that a new prior authorization was needed.

What on earth for? Brenda wondered to herself, as she hung up the phone. They were in February, so perhaps it was because the previous prior authorization had been sent in 2017? Yet, according to the insurance company, the old prior authorization was still in effect. She called the specialty pharmacy back, and this time a different representative answered. He looked up James’ case and stated that all was well; in fact, the medication should arrive in just a few days.

Four weeks went by, yet no medication arrived.

Brenda hung up and called James to let him know he should expect his medication any day now. Answering the phone, James told Brenda that for the past four weeks, going without medication, he’d been frantically calling the pharmacy on a regular basis, trying to order it. They had told him each time that they’d been unable to contact Brenda, despite many attempts, and that his being without medication was due to the clinic’s negligence.

Meanwhile, during those same four weeks, while James’ blood counts were reaching horrific levels, Brenda was able to fill five prescriptions of the same drug for other patients, whose PBM allowed them to receive their medications in-house.

Dealing with PBM bureaucracy can be frustrating to say the least. Getting the runaround… being told one thing by a representative, only to have that information contradicted the next moment by someone else…having the person on the other end of the phone lie to you…these are the things patients and clinic workers meet time and again. And, as if lying about the status of a drug’s delivery wasn’t bad enough, to add insult to that situation by implying the delay is the fault of the very people treating the patient, is unconscionable.

Donald, an electrical engineer, husband and father of two college students, had been diagnosed with colorectal cancer and was scheduled for radiation treatments. His doctor prescribed an oral chemotherapy to be taken alongside the radiation and faxed the prescription off to Donald’s PBM-mandated specialty pharmacy. Three days later, the pharmacy contacted Doreen at the clinic treating Donald, to clarify his prescription. Doreen handled the matter without delay, and then, four days later, called to ask when the medicine had shipped…only to discover that due to ‘issues’ it had not yet gone out.

Doreen had plenty of the medication Donald needed – right there in the in – house pharmacy, and could easily have filled Donald’s prescription herself, had the PBM allowed her to do so.

The pharmacy transferred Doreen to the Medicare department, and after a lengthy wait, a representative came on, to whom Doreen explained that Donald was in fact not a Medicare patient. After another lengthy wait, the silence was broken only by the occasional interjection of “One moment,” the representative explained that regardless of the patient’s coverage, this particular medication ordered for him needed to be ‘released’ from the Medicare Part B department.

The representative informed Doreen that the next step was for her to call Donald and ask him to call them – the pharmacy – to schedule delivery, as the pharmacy was not able to make outbound calls. However, she said, another option was for Doreen to bring Donald in on a third-party call and then wait on the line while the pharmacy verified the entire shipping process with him.

A very frustrated Doreen hung up and called Donald to explain the situation. By now it was Friday afternoon, and Donald was scheduled to begin radiation treatments on Monday, accompanied by the oral medication. It was looking more and more unlikely that Donald would have his medication in time. Adding to the absurdity of the situation was the fact that Doreen had plenty of the medication Donald needed – right there in the in- house pharmacy, and could easily have filled Donald’s prescription herself, had the PBM allowed her to do so.

Countless times, bureaucratic PBM delays mean that patients must postpone treatment–or begin, but without the right combination of medicine–that will give them their best chance at battling this devastating disease.Yet, even when the situation has become a matter of life and death, patients have no recourse other than to wait it out, as the bureaucratic machinery of the PBM is not programmed to make any kind of exception.

Carl was prescribed regular injections of anticoagulant medication. The initial prescription was sent off to the local branch of a major pharmacy and filled without issue. Three weeks later, however, when Carl tried to refill his medication, the pharmacy charged him a $700 co-pay.

They explained that they could not offer refills; they must go through his PBM-mandated specialty pharmacy. Now there was an emergent situation because Carl needed those syringes immediately.

Carl paid the high price to obtain four syringes, which was all he could afford, while his doctor contacted the insurance company, who said that if the local pharmacy would call them, they could offer an override. The doctor called the pharmacy with the terrific news, only to hear them refuse the request, outright. “We don’t have time for this,” they said. “If the customer wants an override, he needs to make the call himself.”

Three weeks later, however, when Carl tried to refill his medication, the pharmacy charged him a $700 co-pay.

Several hours later, Carl received a call from the local pharmacy, saying that they had spoken with his insurance company, and that the mail-order pharmacy will need a new prescription. No word about the override — they hadn’t even bothered to inquire about it while on the phone with the insurance company. Three hours later, the mail-order pharmacy sent Carl’s doctor a request…only it was for a refill on medication used to prevent side effects caused by chemo and radiation — not for the anticoagulant medication that Carl actually needed.

At this point, Carl was twenty-four hours away from being out of medication. Adding to the absurd irony of the situation, Carl’s doctor actually had an in-house pharmacy that stocked the necessary medicine. However, while the pharmacy was once part of the network of Carl’s insurance company, in 2011 their contract had been cancelled, as they presented competition to the PBM’s specialty pharmacy.

Even when PBM specialty pharmacies are unable to provide a patient with the necessary medicine, and even when the situation is urgent to the point of life and death, they still  will not release that patient so he or she can purchase it where it is available. The greed is so deep that they would rather risk a patient’s life than allow another pharmacy to profit in their stead

James was a patient in his late 50s, suffering from advanced renal cell carcinoma. On May 18th, his oncologist prescribed a particular medication, and they began a two-week wait for his insurance company to approve usage. Upon receiving approval, the doctor’s office sent the prescription over to James’ PBM-mandated pharmacy, with a request that it be handled ASAP, as the patient’s situation was dire.

One week after making the urgent request and having heard nothing, the practice followed up to ascertain the status of his prescription. A few days later, a response came back from the pharmacy that they had attempted to contact James twice, but had not succeeded to reach him. They asked the doctor’s office to have the patient call the pharmacy himself. The office asked the pharmacy if and when they had been planning to contact them, to notify them that there was an issue with delivering James’ medication. The pharmacy responded that their policy is to try phoning the patient three times, and then they either contact the prescribing doctor’s office or simply mail the prescription back to the patient.

James’ cancer continued to spread, untreated, leaving him no closer to receiving his medication than he had been three weeks earlier.

While the PBM bureaucracy failed to try to remedy the situation, James’ cancer continued to spread, untreated, leaving him no closer to receiving his medication than he had been three weeks earlier. As for the PBM pharmacy, they seemed completely unconcerned, despite the fact that the five-year survival rate for advanced renal cell carcinoma goes from 53% down to 8%, if it passes from Stage III to Stage IV.

Time and again, doctors reach out to PBM-mandated specialty pharmacies to enquire about the status of medication— only to discover that the process is stuck, and no one at the pharmacy feels any sense of urgency, despite the fact that the patient in question is being treated for a life-threatening condition in which time is of the absolute essence.

Maria was a colon cancer patient prescribed several rounds of chemotherapy. For her first round of treatment, all went smoothly; she was permitted to fill the drug prescription right there at her clinic’s physician-run pharmacy. However, for the second round of treatment, her insurance company mandated that she use one of the large, well-known PBM specialty pharmacies.

Had Maria been any less vigilant, her health could have been severely compromised by such sloppy drug administration.

The problems began when the specialty pharmacy delivered Maria’s medicine late, which delayed the beginning of her second treatment round. The following month, things worsened. Maria had suffered profound side effects from the medication, causing her oncologist to lower the dose for her third round of treatment. When Maria called the pharmacy, however, they said they had no record of the new prescription on file — though it had been sent and received.

Confusingly, shortly after the call, the PBM pharmacy called Maria back and said the medicine was about to be shipped. Upon her inquiry, the pharmacy informed her of the dosage; it was the same dosage and instructions as the previous two rounds, which had caused the intolerable side effects. Maria proceeded to spend the next several hours on the phone with the pharmacy to correct the situation. In addition, her physician’s office called and spent time clarifying the matter with them. Had Maria been any less vigilant, her health could have been severely compromised by such sloppy drug administration.

With PBM specialty pharmacies being run completely separately from the point of care and physicians, patients must be extremely vigilant at all times to ensure they receive the correct medication. For cancer patients who are already dealing with a life-threatening disease and a range of debilitating side effects of the toxic medications they are on, this additional burden can be very costly — and for some, simply not feasible.

Janine, a 22-year-old woman with Hodgkin’s lymphoma, was prescribed a specific medication for fertility preservation. Her clinic’s representative contacted the PBM specialty pharmacy to determine if prior authorization was required for the drug, and what Janine’s co-pay would be.

The PBM pharmacy representative rudely responded that Janine’s doctor needed to follow the proper procedures: send in the prescription and wait the necessary two days before obtaining the benefits information. The clinic representative explained that they only wanted the benefit information in order to make a treatment decision; that without knowing the co-pay they didn’t know if Janine could afford the medication, and therefore didn’t know whether or not to prescribe it.

The response was that the PBM specialty pharmacy could in no way help in this situation, nor could they refer them anywhere for more information.

The response was that the PBM specialty pharmacy could in no way help in this situation, nor could they refer them anywhere for more information. As a result, the clinic’s hands were tied; they had no idea if the insurance company would authorize the medication, and if not, if Janine would be able to afford them on her own.

PBM specialty pharmacies have a long list of complex bureaucratic protocols, but shouldn’t they be able to help patients and practices make cost saving decisions? Unfortunately, PBM bureaucratic protocols are often harmful to the very patients they are meant to help.

Bertrand was diagnosed with renal cell carcinoma and prescribed a specific oral medication by his doctor. The oncology clinic sent out his prescription to the PBM- mandated specialty pharmacy on February 4th. Four days later, the clinic called the pharmacy to follow up, and was told that the pharmacy was waiting for additional information from Bertrand. Ten days later, they called again to see where things stood, and were told that while the pharmacy had tried to call the patient and schedule delivery, they had been unsuccessful in reaching him. The patient’s clinic asked why the pharmacy had not tried to call the patient’s doctor; were they not aware that Bertrand was suffering from renal cell carcinoma, and that it was quickly progressing without medication?

Nearly forty days since being prescribed the medication, Bertrand had still not received it.

Another eleven days passed—nearly one month from the initial prescription—and Bertrand informed the clinic that the medication had still not arrived. The clinic once again called the pharmacy and were told that the pharmacy had closed the patient’s account there, having been unable to reach him and verify his information in order to schedule shipment. The clinic then called Bertrand and asked him to contact the pharmacy in order to re-open his account and immediately schedule delivery.

Nearly forty days since being prescribed the medication, Bertrand had still not received it. The oncology clinic ultimately filed a formal complaint with the insurance company and is waiting for a resolution. Meanwhile, Bertrand continued to wait, though his cancer did not; in fact, between Stage I and Stage IV of renal cell carcinoma, five-year survival rates go from 90% down to 10%.

Time and again, patients wait for medication from PBMs that will never arrive—because of a small detail missing in the documentation, or a situation that requires the specialty pharmacy worker to take some proactive measure. These workers, with their passive attitude towards patient care, unfortunately, do not see themselves as partners to the process, nor do they see it as their responsibility to shorten the time needed to deliver patients’ medication.

About a year ago, Darlene was diagnosed with multiple myeloma and prescribed a particular medication. Single and living alone, Darlene decided she would continue to work full-time while being treated for the disease.

The first hurdle Darlene met was getting her 21-day supply of medication filled by the mail-order pharmacy mandated by the PBM. The pharmacy called her while she was in a meeting at work and insisted that she listen to the mandatory recital of the “Patient Understanding.” They promised it would take no longer than five minutes, yet forty-five minutes later, having been transferred to four different representatives as part of the process, Darlene finally hung up the phone.

While confused and upset, Darlene also felt relieved that the PBM ordeal was over, and all she had to do now was to wait for the medication to arrive. She could not have been more wrong. Although Darlene had made it very clear that she arrives home every day from work at 4:30 p.m., two days later Darlene arrived home to find a note on her door that UPS had tried to deliver her medicine at 2 p.m. She spent the rest of the day trying to locate the medicine.

As time went on, Darlene’s situation only worsened, becoming more and more time-consuming for this elderly woman who was already contending with a fatal cancer.

After a great deal of effort, Darlene managed to schedule future deliveries of her medication for Saturdays before 1 p.m. Darlene is hard of hearing, so that Saturday, she sat in her front room from 8 a.m. to 1 p.m., afraid to even go to the bathroom lest she miss the knock on the door. At 2 p.m., she opened her front door and found a note from the UPS driver that he had attempted to make the delivery but found no one at home. Again, she had to chase down the package and finally ended up retrieving her drugs from a drop center twenty-five miles away from home.

As time went on, Darlene’s situation only worsened, becoming more and more time-consuming for this elderly woman who was already contending with a fatal cancer. Each time she attempted to speak to a PBM representative to resolve the issue, she was passed to a new person who refused to listen to what Darlene had to say, but rather droned on repetitively that Darlene must “follow procedures” or she would not receive her medication.

Not every cancer patient has a vast network of family and friends who are there to assist them in their time of need. Often the elderly, or those living alone without close friends nearby, are forced to handle everything by themselves. While a physician-managed pharmacy would be able to adjust to such a patient’s needs and assist them in easily accessing their medication, PBM mail-order pharmacies are not set up to handle the requirements of individuals. Patients must comply with their procedures and regulations, regardless of the personal cost.