My experience trying to obtain the drug prescribed by my rheumatologist is a cautionary tale. This is not about whether the doctor ordered it, or how the specialty pharmacy (CVS) must wait for approval from the insurer before filling the prescription, but the fact the patient who resides and waits at the end of the line, me, is treated not as a person in need, but an expense. In my case, Express Scripts, contracted with Medicare, must agree that the drug retailing $7,000 a month is an expense worthy of me and my pain, even though it is clearly in their formulary. Of course, if I could pay for the drug myself, I wouldn’t have a problem. Being denied this drug was not about drug safety or effectiveness, but the cost to Express Scripts.

I am sure there are many patients like me, but because I am a bit more informed than most — resulting from my long health care career — I am able to track all moving parts. I am now experiencing the dehumanization I always fought against. And I want to warn patients not to be lulled into believing drug and insurance companies’ declarations of benevolence. The insurance industry aims to maximize profitability by controlling access to expensive drugs.

Pharmacies want to collect their share, but cannot influence the insurer’s approval, theoretically. (What happens when CVS and Aetna join hands?)

The pharmacy is ready to fill my script, the doctor has a treatment plan for me, but I invisibly wait. Express Scripts has total control — not the physician, not me.

Patients expect quality care and good medicine. Once a prescription is sent to one’s pharmacy, one never expects the Spanish Inquisition. But once the prescription is in an approval process, the insurer can take weeks to make a decision. In my case, over a month went by before I got a formal rejection. The unrelenting pain, limited range-of-motion and increasing deformity that drove me to the rheumatologist, persists. I am not seeking pain-relieving drugs, but an effective treatment for the cause of my pain and deformities.

None of us can escape the wonder drugs advertised on television and in print. (Terrifying side effects are slurred quickly at the end of each advertisement.) The viewer is instructed, often by a celebrity, to ask their doctor. Then, if the doctor prescribes the drug, there is no guarantee insurance will cover it. A patient’s hopes are easily dashed in the blink of an insurance company’s eye. The ads seduce you, and for-profit health care rejects you.

After my physician followed all Express Scripts’ rules and documentation, Express Scripts rejected the drug because my physician had failed to first prescribe cheaper drugs. My physician and I followed their recommendation to use a cheaper drug for over a month. I can now attest that this less costly drug did nothing to relieve my pain. I have hope once more. How could Express Scripts deny me now?

Exactly one day after my follow-up visit with my physician who promptly resubmitted the drug justification, I received a call from a representative from CVS Specialty Pharmacy asking me for my personal identifying information, and then declaring: “You are correct!” I was elated that I still knew who I was even at my old age. Was she checking on my mind? I was hoping to hear that my drug was approved!

The agent made no sense at all. She had no idea who I was, my ailment, or my situation. She promised me she was taking notes while I asked about the “authorization” process and why did she call me? When she next asked how “Humira was going,” she cracked my composure and confidence in CVS.

Humira has never been considered, and I asked to speak to her manager. An authoritative sounding woman announced she was a patient advocate from the escalation department. And that’s just what she did; she escalated my upset to 10 on a 10-point anger scale. She told me I was auto-called. Agents, who do not have any patient information until after the call connects, check on prescription delivery. My call had been an error, but the purpose of an auto call was to help me, and I should recognize and appreciate that. My anger was showing in my voice, and she warned me to stop screaming. I got myself in check, temporarily, and explained why I was feeling so strongly. My doctor, the day before, resubmitted “authorization” for the drug that had been denied. My pain was ever-present, and this pointless call out of nowhere shook my equanimity. If she wanted to de-escalate my anger, she should be apologetic and empathic. She sternly insisted, in a scolding tone, she was using empathy by explaining the important purpose of the call. Now I am in tears and asked to be “escalated” to her superior.

I next met the leader of this 21-person CVS Health unit located in Pittsburgh, PA. He was obviously briefed by his patient advocate from the escalation department who had strongly defended her empathic approach to me. I was aching to tell him how I was mismanaged by an agent who thought empathy was the defense of the offense. (I have worked over 40 years as a leader in patient advocacy.) I de-escalated myself in order to create a collegial conversation. We shared information, and I shared many years’ worth of resources to help him develop his staff, including my own copyrighted guide to empathic responding. I gave him my prescription. My anger was the only “authorization” I needed. I hope other frustrated patients will receive better care and service from the CVS Specialty Pharmacy — that’s patient advocacy!

But, I am still suffering and do not know my fate. I am still the patient at the end of the line with no idea if help is on the way.

Leslie G. Bank is a physical therapist.

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