Necessary Dependency Needs a Fix
Note: This blog post, and the ones following, are Elizabeth’s personal story of living with schizoaffective disorder. She hopes that by sharing her story, she can help others who are also facing a mental health challenge.
At the end of December, I remember calling the Bowen Center, my mental health facility in Wabash, Indiana, to see if the nurse knew anything further regarding my medicine situation. She quickly called back. Samples were shipped to their office last Friday from the manufacturer. I felt thankful that I would once again be taken care of for the time being. As the day went on, I began to worry, wonder, and want to simply provide for myself better through monetary and other insurance coverage means to alleviate the need for the run around and frustration when trying to obtain my medication.
Early on when I was ill, I vigorously fought against the medicine. I didn’t see the need for it and didn’t feel that it was necessary regardless of how my parents tried to convince me. I wanted to just be me.
Being dependent on medication daily was foreign to me at the age of 25 when I first started seeking help. I was a healthy person who exercised regularly, and ate healthy meals most of the time. I also slept well at night and got plenty of sleep on a regular basis. I worked full-time, volunteered, and had good friends to socialize with, but how quickly life changes.
In March 2008, I was given a diagnosis of Schizoaffective Disorder. My need for medication was real, but I still continued to fight it only taking medication when I was hospitalized in May 2008, and later on in July and August 2008.
By mid August 2008, I was committed to taking medicine regularly. It was either that or never be released from the hospital.
Over the course of the next 3 years, I took medication on a regular basis except for a few short months between the end of 2009 and beginning of 2010.
It is difficult to find the medication or combination that works. I know this from personal experience. The road may be bumpy, but sticking with it may eventually yield the right match.
Since October 2011, I have been on Fanapt. It certainly changed my world, my life, my everything. Instead of being in and out of the hospital, I could begin to build a life and repair my self- esteem, self-confidence, and emotional disarray. It was a chance as a mentally ill person to deal with what I am supposed to deal with when properly medicated.
Originally the medication came through Novartis Pharmaceutical Company. A med assist program was available due to my low income status, and the fact that my insurance did not cover the medicine. Fanapt at the time was $1,200 a month out of pocket, and well out of my price range.
Not long after that, the Novartis Pharmaceutical Company no longer carried Fanapt, but I was able to use coupons until other means were found. I was willing to do whatever it took.
Fanapt switched to Vanda Pharmaceutical Company. Thankfully, a med assist program was available again due to my low income status. The medicine was still $1,200 per month out of pocket, and completely unaffordable.
Then, the med assist program at Vanda Pharmaceutical Company said my Medicare coverage changed. So for the past few weeks, I have been in limbo trying to figure out what I am going to do about my medication.
Humana handles my prescription drug coverage. I promptly contacted them to find out the actual cost of the medication if the insurance coverage is applied. Fanapt would be $1,100 to $1,200 the first month, and $400 to $500 for the rest of the year. The cost is still not affordable. Each year I would have to pay $1,100 to $1,200 the first month. With living on my own in an apartment, I don’t have that or even an extra $500 a month after bills, food, and gas.
As of today and talking to the nurse at the Bowen Center, the med assist program at Vanda Pharmaceutical Company says I have two different sources of insurance, which is not true. I still do not make over the limit for the wages I can earn and still be on med assist. It is confusing and frustrating.
Samples are wonderful, but the supply of them is indefinite. If a generic medication comes out, there will be no more samples available according to my nurse at the Bowen Center.
I want to take care of myself, but how? Who can help me? Where do I turn?
The frustration I feel is appropriate. The tears that have fallen are just. The worst of the dilemma is do I risk losing my apartment if I wind up in the hospital again if working full-time is too much? Or do I switch jobs and take a job that doesn’t pay great only for the insurance that may or may not cover my medication in a cost effective manner? Do I stay at my current job and hope for the best with the samples? What is the right choice?
Yes, we have choices in healthcare, but I feel more and more that my options are limited due to my diagnosis. I wish I had the answers for the healthcare system in the United States. I know we don’t want our prisons to be holding cells for people that simply couldn’t get their medication. What do we do? What if that happened to you?
I am on disability because sustaining full-time gainful employment is very difficult for me. Currently, I do work 30 hours per week. I want to work and provide myself with what I need but my situation doesn’t allow me to do so. What can I do? I pondered that question as I drove home from the Wabash, Indiana Bowen Center with my brown paper sack of Fanapt samples, and tears streaming down my face.
Necessary is not even a good enough word for the mentally ill and their need for medication. The struggle is real, and doing something about it is a collective goal. We need champions that advocate for the mentally ill, so that the cost of medication is manageable and our lives livable.
I no longer fight against the medication, but instead fight for it. I want others to experience the same success on their medication that I have had on mine, and feel human dignity on disability or off. Being me means being on medication, a necessary dependency. Who has the fix?
My name is Elizabeth Schmalzried. I am from Wabash, Indiana. I graduated from Indiana University in 2004. I was a member of the Women’s Golf Team at Indiana University Purdue University Indianapolis (IUPUI) during my four years in college. I was diagnosed with Schizoaffective Disorder in March 2008. I have been through a great deal with my mental illness, and continue to manage my mental illness in recovery. I moved to Fort Wayne, Indiana in October 2016, and hope that my contributions to this blog will be relatable and help others who have similar struggles. I enjoy working out, reading, listening to, and watching the news, golfing, cooking, volunteering, watching sports, watching movies, listening to music, and spending time with my boyfriend, family, and friends.