“Every moment is an organizing opportunity, every person a potential activist, every minute a chance to change the word” — Dolores Huerta

Kaitlyn is a 35 year-old otherwise healthy woman. She lives with her two young children and boyfriend in a middle class neighborhood in the area. She works part-time at a school cafeteria to supplement the family income. She does not drink, or smoke cigarettes, but she does smoke cannabis “to calm her nerves.”

One morning Kaitlyn woke up with blood in her mouth and aching all over her body. She later described the feeling “as if I got hit by a Mack truck!” She Googled her symptoms and proceeded to the Emergency Room to get checked out. When the medical students and I saw her in the ER she appeared distraught, she was fidgety, and her speech was pressured as she related her story. On further questioning, she mentioned memory problems and “weird spells” over the previous couple of years “like a rush going from my body to my head!” This feeling was usually preceded by recalling a familiar dream, or déjà vu. Her sibling, who was in attendance, confirmed the story and added “yes, and she looks like a deer in the headlights for a few seconds!” Her spells were happening several times a day, but she chucked her symptoms to her anxiety. She denied any risk factors for seizures, such as, head injuries with loss of consciousness, family history of epilepsy, or seizures with fevers as a child. Her physical and neurological exams were otherwise normal, save for bites on each side of her tongue. “I think you are right, it looks like you had a generalized tonic-clonic seizure” I told her.

Kaitlyn was admitted and by the following morning she had had an EEG—a brainwave test to look for abnormal electrical activity in the brain—and a brain MRI. The former showed interictal epileptiform discharges (IEDs) arising from the right temporal lobe. The presence of IEDs can help confirm the diagnosis of epilepsy, and where seizures are coming from (Chabolla and Cascino 2006). The brain MRI showed a bright and shrunken right hippocampus—the most medial portion of the temporal lobe—which can be seen in patients with drug resistant temporal lobe epilepsy. As I explained to Kaitlyn, her history, EEG and MRI findings were all consistent with temporal lobe epilepsy coming from the right side of her brain. She was terrified, but at the same time expressed relief to know “she wasn’t going crazy.”

We started her on an antiseizure medication called levetiracetam, informed her that she would not be able to drive for 6 months as per state law, and discharged her home with a follow up appointment in 2 weeks. The following week I received a message from Kaitlyn, she was irritable and she was “snapping at her kids and boyfriend a lot!” I explained to her that this was likely a side effect of levetiracetam, and we switched her to another antiseizure medication called Vimpat (lacosamide). When I saw her in follow up she stated feeling much better, she had no side effects to the medication, and the number of episodes had decreased dramatically.

In her next visit Kaitlyn reported feeling more like her old self, even her memory was better! She had just gone back to driving and no longer depended on rides to go to work or pick up groceries. It seemed she was finally turning the corner. That is, until one day when she received a letter from her health insurance stating Vimpat—the very medication that had finally controlled her seizures—was no longer covered by her plan and that she would need to contact her doctor. At around the same time I received a prior authorization from her pharmacy benefit manager.

Prior Authorizations, Prior Auths, or PAs are used by pharmacy benefit managers (PBMs)* to determine if a treatment or service will be covered. The origin of Prior Auths can be traced back to utilization reviews by Medicare and Medicaid in the 1960s. These were ostensibly used to reduce over utilization of resources and identify waste. Over time the utilization review model was widely adopted by health insurance plans and evolved into what we now know as prior auths. I find PAs a draconian instrument widely used by PBMs to deter clinicians from ordering certain medications, studies, or procedures. It breaks down like this: Clinician orders prescription X for condition A. If prescription X is not in formulary—meaning, the PBM contracted with the health insurance plan does not have a special deal to get prescription X cheap—the PBM will send the clinician a Prior Auth. The lengthy document, which not infrequently needs to be filled by hand and faxed back over to the PBM, will recommend other treatment options for condition A, like say prescription Y. Here is the kicker, the pharmaceutical maker of prescription Y has a deal with the PBM for a cheaper price than prescription X! Therefore, the PBM will push for prescription Y, regardless of whether the patient is doing well on prescription X or not! How does the PBM know whether the patient will do well on prescription Y? You may ask. Well, that’s the problem, they don’t! For all we know the patient could have a fatal reaction to medication Y or condition A could run amok! The decision is purely economical with no regard to the patient’s health or condition.

Can the clinician then appeal the PBM for medication X? The answer is yes, but not infrequently before trying prescription Y, so called step therapy. In case the clinician attempts to forgo prescription Y all together, he/she/they would need to fill the prior auth in which the clinician would have to answer questions such as: When was the patient diagnosed with the condition? has the patient been hospitalized for such condition, and if so which dates?, when was the patient started on prescription X?, has the patient tried other medications? if so name the medications, and the dates they were tried? you get the gist…

The rate limiting steps in this equation are time, man power, and of course money! With dozens of PAs a day, some practices have resorted to hiring people—in cases whole departments—just to fill out PAs. Others have given clinicians admin days to fill PAs and clear the junk from their inboxes, this in turn results in less access to care! Moreover, the clinicians or practices, many of which operate on tight margins, are not reimbursed for the time it takes to fill prior auths. So where is the cost savings? One may ask!

Lastly, the decision making by the PBM once the information is ascertained and faxed or entered, may take as long as two weeks. Yet, 90% of Prior Auths are approved. So why go through this exercise in futility? As I said before, to deter us from ordering certain medications, tests, or procedures.

Back to Kaitlyn, once we were slapped with the Prior Auth, we had to move fast, as she only had enough medication for three days. Withholding antiseizure medication, even one dose, may lead to a recurrent seizure, which could in turn lead to another 6 months of no driving, loss of wages, injury, or even death. Unfortunately, there was no generic lacosamide in the market—only brand name was available at the time. Since brand name medications are more expensive than generics, PBMs make it exquisitely painful to approve. In the end, in spite of our best efforts, we were unable to secure the medication in time, and ended up switching her to another antiseizure medication. She had some side effects to her new medication, and she had some breakthrough auras as well, but she did not have any further generalized tonic-clinic seizures. When Vimpat finally went generic we were able to switch her back and she is now stable and doing better.

I wish I could say this scenario is rare, but it happens all too often. That is why it is important to advocate for our patients and for the practice of Neurology. We should not be told by an RN or doctor in the other side of the line, which medication is best for our patients. Almost every year since 2015 I have made the pilgrimage to DC to participate in Neurology on the Hill where a bunch of concerned Neurologists take the time off their busy schedules to talk to their elected representatives in congress to advocate for issues such as Prior Authorizations and the unnecessary burden they create on an already stressed system.

*Pharmacy benefit managers through specialty pharmacy services such as CVS Caremark, or Optum Rx are contracted with commercial health insurance plans, self-insured employer plans, Federal Employees health benefit plans, and other to negotiate prices from drug manufacturers, and encourage use of generic medication.

Disclaimer: The views and opinions expressed in this blog are those of the author and do not necessarily reflect the views or positions of any entities they represent.