When the System Works Against Medication Adherence

Between 2004 and 2005, while serving as the Vice-Chairman (mental health consumer representative) on the New Jersey Governor’s Task Force on Mental Health, I had extreme difficulty seeing a psychiatrist. Ironically, this occurred when the task force was discussing Involuntary Outpatient Commitment (IOC) which is now accepted into New Jersey law even though it was strongly opposed by advocates and psychiatric rehabilitation professionals. I was in my 25th year as a service recipient in the public mental health system. I was working full-time and took the day off to attend the psychiatrist appointment. On my way out of a police academy, where I considered renewing my certification as a volunteer certified police instructor, I checked my voicemail to find a message stating: “Your appointment is cancelled today because the psychiatrist can no longer take your health insurance. You will be rescheduled with another staff psychiatrist.” Despite my paraprofessional status and own inferiority complex I went to the agency anyway. After meeting with a person of “authority” I was given permission to see the psychiatrist and thoughtfully informed I would be billed as if I were uninsured. The psychiatrist had no problem seeing me despite the internal agency bureaucracy and I left with my prescriptions. 

Needless to say, I detailed my experience to the task force. About 3 months later I went to see the new psychiatrist, well not really “new” as I had seen that psychiatrist before, but insurance approved. We know psychiatrists are stretched thin and see a lot of people and unfortunately the quality of service sometimes suffers.Nevertheless; when I tried to meet with the new psychiatrist after handing over my co-pay I was informed the psychiatrist was dealing with a crisis and could not give me a time when the psychiatrist would be available: i.e., 15 minutes, 30 minutes or an hour? The expectation was that I would sit and wait. I refused and asked for the prescription to be called in. The response, “we don’t do that.” I left and the psychiatrist called me. I stepped out of my deemed paraprofessional status and inferiority complex as we bantered over the telephone. The psychiatrist reluctantly conceded and called in my prescriptions.

The stigmatizing drama doesn’t stop there as 3 months later, for my next appointment, the same thing happened.  This time the psychiatrist and agency refused to call in my prescriptions, “they don’t do that” and really meant it.

The agency disregarded my time and whether or not I got my medication. However, they were timely mailing me a termination letter as if I were “non-compliant.” The letter failed to state I showed up for my appointments, I paid my copay, and then was told the psychiatrist was unavailable. Despite being in complete distress I advocated elsewhere for a referral. I was given a public system psychiatrist who I could only see if I would “commit” to see a therapist at the agency (see more on shared decision making here). I hadn’t seen a therapist in 3 years. I now figured I was going to lose my job, my career path and my social standing in the community. I was tired!And not going to beg anymore for medication! I’d end up in a state hospital or criminal justice system because of system’s lacking monitoring and oversight.

Fortunately, I got assistance from a friend who put me in touch with a private psychiatrist who even picked up their own phone. After the initial visit with the private psychiatrist I was asked to come back monthly then every 3 months for over a year. Since 2007 I see the psychiatrist every 6 months. Furthermore, I have met courageous individuals, who despite the organ damaging side effects, have relentlessly “adhered” to medication. After 20 years on a medication, I was taken off, as it would have damaged my kidneys. A different medication now processes through my liver.

I believe medication is only a small, often unflattering complex delivery system, and limited aspect of one’s recovery. My recovery is participating in valued social roles beyond the trial and error and limitations of medication. I welcome you to share your own medication experiences; nameless story of a loved one; and as providers your challenges/barriers and resolution ideas to improve medication services so that the system doesn’t impede consumer social roles such as worker, student, and more.

George Brice