Personal Experience: The Insurance Tightrope Walk

By William

I have had bipolar disorder since I was 17. I functioned well enough to get a computer science degree in an honors college at a local four-year university, have a 22 year-long career in my field of expertise, get married, and have a child. I am not functioning well enough for such milestones at this point in my life. I feel a bit like I am slipping through the cracks in the system. But overall, my normal state of functioning over time has not decreased over the years. I am 46. At this point, all my own personal markers say I am in mental health crises. I am out of work on disability for my disorder. I cannot maintain regular visits with my daughter on the schedule I agreed to when my wife and I separated two years ago. I am not eating regularly and not taking care of myself in the way in which I am accustomed. I am waking up at 1 or 2 a.m. and am not able to get back to sleep. Overall, the constant job of maintaining a level emotional state for me takes a great deal more effort now than it has in previous decades. I think a lot of people, whether they are diagnosed with a mental illness or something else, would understand that statement in this tumultuous time.

I am on Vraylar. It is an atypical antipsychotic that works as a mood stabilizer for my bipolar disorder. It is a very expensive medication but it is a good medication for me. Normally. Each pill charges my insurance about $950. I was taking three 1.5 milligram Vraylar pills a day to maintain stability. That is not an outrageous dose, by any means. However, every time I tried to get my prescription filled, insurance kicked back that they needed “prior authorization” from my doctor. This happened every time I tried to get it filled, regardless if there was a change in dose or not. A few weeks ago, it took a week to satisfy the insurance agency with prior authorizations from my doctor’s office so that they would fill a lesser dose of two pills. Two pills of Vraylar (3 milligrams,) the way the drug works, does not adequately insulate me from the highs of mania. That milligram level is more for depression than mania on this particular drug, as any doctor would know. But insurance is driven by profit, not doctors. For a time, at my doctor’s advice, I was taking three 1.5 milligram pills, though insurance would only fill it for two pills. So, of course, I would run out early. And insurance would give me more trouble when I tried to get it refilled. But my doctor and I decided that I would still have problems refilling my Vraylar next time, whether or not I am taking the dose that insurance would allow. Therefore, I was taking three pills (4.5 milligrams:) this is the dose prescribed by my doctor, not my insurance. I was without the medication for a week a few weeks ago while we got the prior authorization approved by insurance though I did not wait until the last minute, by any means. It took a week to get the prior authorization from my doctor’s office approved by insurance. I started the process almost a week before I ran out. During the week without my medication, waiting for the “prior authorization,” I stopped sleeping through the night and began having paranoid thoughts.

I imagine you are thinking this must be horrible insurance, or an unresponsive doctors’ office, or perhaps a bad pharmacy. But I worked for a local university and have some of the best health insurance one can get. It is what attracted me to work there. I see a doctor who is the head of my local depression center. He is a very good psychopharmacologist. And after running in circles at CVS, I had switched to a local pharmacy here in Ann Arbor that is much more responsive and personalized.

Health insurance bureaucracy, not my doctor, was effectively dictating my doses. They were dictating if I can get my medication or not. I started getting hypomanic that week because I was without my mood stabilizer for a week. It was not my fault or my doctor’s fault – he did everything he could, even ordering  two prescriptions – one on the lesser dose that we thought insurance would honor. And my insurance company, unbelievably, responded that they would need a prior authorization for that dose too. And it is the two pill (3 milligram) dose we ultimately got to go through because my insurance, provided with prior authorizations for both doses, still blocked me from getting my normal 4.5 milligram dose. So I got the lesser dose filled and was taking more than the dose on the bottle, because that is the dose I was prescribed by my doctor.

The system that I depend on to maintain my emotional stability with my illness is cracking. It is largely broken already, just ask any good counselor or psychiatrist. My experience is not an isolated one, but instead, it is becoming a constant and exhausting battle for the medication, in my experience. At this juncture, I feel that I cannot maintain the high level of functioning that I had in previous decades with my illness. I have had to adjust my expectations of what I can do. I talked to my doctor about getting on an older, cheaper medication so that I could maintain a constant supply. Otherwise insurance would refuse to fill my more expensive medications. They gave my pharmacy and doctor’s office the runaround. Older, cheaper medications, in my experience, do not get challenged by my insurance every time I try to fill them. There was no fix for this situation that I could see. In my experience, the situation is getting worse and worse, not better. I imagine such experiences are getting more widespread among the population. And the population taking mental health medications is on the increase, to a huge degree.

I have accepted that I am dependent for my stability on a broken and worsening system. My sister says doesn’t want me to “slip through the cracks” like another young family member of ours who committed suicide. But the cracks in the system seem to be growing larger, even with my good insurance. And I felt like I was slipping through these cracks, not because my functioning over time was decreasing, but because the system I depend on has ever-widening cracks in it. I had adjusted my expectations of what I can do right now without a constant supply of my medications because of insurance meddling. I thought that I may need to have my doctor put me on something cheaper that doesn’t work for me as well as the medications he has prescribed for me because insurance is constantly challenging my filling of my current medication. It was a hard choice for me. Either way, I know I am not currently functioning at the level I need to be to reach milestones such as those I have reached in previous decades of my life. It seems to me that this was just life in the 2020s. I hope our leadership in Washington recognizes the system I depend on (particularly the insurance agencies and the overpriced pharmaceutical industry) is dysfunctional.

But there is a silver lining to this particular story. My local pharmacist told me that each Vraylar pill costs $950. So, I looked my medication up to see what it would cost without insurance. I found that, for some reason, a single 1.5 milligram pill was the same cost to insurance as a single 4.5 milligram pill. So I thought, instead of taking three 1.5 milligram pills for a total of 4.5 milligrams, that it may be the same cost to insurance as one 4.5 milligram pill. This would cost insurance a lot less than taking three $950 pills a day. I met with my doctor and gave him my findings. He agreed and we switched to one 4.5 mg pill. This time, when I had it filled, insurance did not question it. So now I am on the dose I should be on. Hopefully, my insurance will stop giving me trouble every time I have my Vraylar filled now that it is cheaper for them. This sort of nonsense is what I deal with now on a regular basis. Insurance tries to dictate what I am on, over and above my doctor’s orders. They do this because they are driven by profit. It is a sad and frustrating situation. As I said, I hope our leaders in Washington are aware of this nightmare and will step in and do something about it. I get the feeling from others I know that this sort of experience is common these days.