PBM Denying Prescribed Medications – Judge, Jury, & Executioner?

PBM Denying Prescribed Medications – Most of us have experienced a denied pharmacy claim at one time or another.  Usually it’s a matter of your plan covers this antibiotic, but not that one.  A switch is made and you get over the infections.  Its happened to me a few times – once with an allergy medication and a couple times with a medication for my thyroid cancer testing.  In both cases it boiled down to a simple matter of money.  The insurance company didn’t want to fork over the money for the more expensive drug when there were “other options.”

In the case of my med for cancer testing – it was Thyrogen.  This amazing drug, which is fully FDA approved, is a synthetic form of thyroid stimulating hormone (TSH), which allows thyroid cancer patients to undergo treatment and testing without having to go through thyroid hormone withdrawal.  If any of you or a loved one have experienced “hypo-hell” you understand the value of this medication.  Why did my insurance deny the claim?  They said that the same results could be achieved without paying for the drug at all – aka – just stop taking your life sustaining meds for a month.  Can it be done? Yep. But there are life threatening side effects to that withdrawal.  Just ask my friend Elizabeth – she almost died.

Pharmacy Benefit Managers

So, who are the folks that make these decisions? In most insurance plans, the decision on whether to pay for one drug versus another, or to pay at all come down to pharmacy benefit managers (PBMs). PBMs are a middleman (organization) in the prescription drug world, negotiating prices and purchases for healthcare plans from pharma.  These groups often have a set list of “rules” that they operate by in relation to treatment for complex diseases such as cancer.  Even simpler medications are controlled via PBMs – I was once denied an inhaled allergy medication simply because I had not tried and failed on a cheaper alternative in their flow chart.  This is referred to as “step therapy” – you have to fail step A in order to receive the drug at step B.  Even if you doctor wants to start with step C, you have to first fail on A & B.

Essentially, we have a bureaucracy coming between doctors and patients.  Without having knowledge of patient history, or why a physician prescribed a certain drug, these organizations have the power to deny a prescription in the name of cost savings (a savings that is rarely passed on to patients, rather going to the payers).  As such, doctors are forced to justify their decisions to a faceless organization, or to go against their medical judgement to follow the pre-approved steps.

FYI – These PBM’s are owned in a majority of cases by insurers themselves.  For instance, United HealthCare owns OptumRx, and Cigna owns Express Scripts.  These are names that we usually think of as nothing more that a mail order pharmacy service, but they are much more that that, and much more powerful.

What can you do?

If you have faced this, or are facing a denial by a PBM, sadly, there isn’t a whole lot that can be done at this point in time. In the case of Norma Smith of California, her treatments as prescribed by her doctor were delayed by months in order for her to fail the steps.  With stage 3 multiple myeloma, these delays caused nearly catastrophic damage to her liver, all while waiting for the medications her doctor prescribed in the first place. Months of protests by her, her husband, and her doctor’s office finally provided the prescription, but only after her health continued to deteriorate.  Her physician, Dr. Ravi Rao, even speaks of a denial for another patient where the PBM requested that surgery be performed before approving a medication.  Imagine a faceless entity second guessing an oncologists decision in such a way!

Large oncology groups may have specialists on their staff that are experienced in dealing with PBMs.  Regardless of the size of your doctor’s staff, they are the best place to start.  At a minimum, they may ask for justification.  In the case of the patient that the PBM wanted surgery for, the doctor was required to send in documentation that the patient wasn’t a candidate for surgery.  Sadly, many times the answer is not as simple as that (although it was horrifying).  Often the doctors are given no choice but to see their patients fail on treatments that they didn’t want, delaying lifesaving medications.  Hence my assertion that these PBMs are in the proverbial position as judge and jury, and sadly executioner in some cases.

I urge you all to take a look at the Community Oncology Alliance, a non-profit that advocates for patients receiving cancer care in their own communities.  They have focused groups for pharmacy benefits, oncology practices, patients, survivors, caregivers, and more.  Their members and board of directors have testified on Capitol Hill concerning PBM interference in the doctor-patient relationship and are active in sending position letters and papers to powerful men and women in Congress, as well as in the administration of the Centers for Medicaid and Medicare Services (CMS).

Have you had experience with a PBM denial?  If you are comfortable, we at Cancer Horizons would love to hear your story.  Follow this link to tell us more, or comment below.

As always, much love, many prayers, and abundant blessings to all of the warriors out there!!

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