Those that live with a chronic disease are often credited with surviving through symptoms, side effects of medications, and other health issues that come along with their illness. However, people rarely think of the stress that comes along with gaining the healthcare necessary to treat their disease and live a relatively normal life.
Many systems interact in a patient's treatment - the health care team who helps determine the best way to manage a disease, the pharmacy to fill prescriptions, and the insurance who will supposedly make all of this affordable. Even if a patient stays with the same businesses, this can get incredibly complicated if anything changes within these businesses or in the person's life.
In the past two weeks, I intimately learned the danger of systems that do not share information and may not always communicate enough to truly benefit the patient. Although I thought everything remained the same, several small changes almost necessitated hospitalization and brought forth the prospect of surgery.
Two weeks ago, I told Walgreens to refill my prescription for Ustekinumab as I always do prior to my injections (completed once every eight weeks). This started the beginning of my realization over the stress that comes from needing to trust that everyone in your team will do what's right. First, the pharmacy sent my prescription to the wrong pharmacy, but a phone call two days later fixed that. With my normal time-frame, this would not have been a problem. Three days passed; normally it takes two or less to fill my prescription through their specialty pharmacy. My husband and I spent over an hour on the phone on a Saturday to determine what was happening with my prescription.
By the end of our phone calls, we had no idea who had been paying for my medication for the last 9 months. The nurse on call at my new clinic said they could only help if my symptoms worsened to the point of needing hospitalization.
One week after I started the process, I had five days left to receive my prescription on time. I started again calling the pharmacy to determine why my prescription was rejected and asking the physician who wrote the script to talk with the insurance. At that point, we learned the insurance company required another prior authorization, although never told me I would need another so soon. We figured it could not take long since the insurance approved it at the beginning of the year. However, I learned the clinic was working with an insurance I told them to take off file in January.
Throughout the rest of the week, my husband and I spent many hours on the phone trying to figure out what blocked me from receiving the treatment that has been the only medication to ever bring me into remission. From the clinic using my maiden name, to the pharmacy using my wrong insurance, to the insurance company saying they would pay for $1500 and leave the other $21,000 for me to pay, I thought my only option would be going to the hospital and potentially needing surgery depending on how bad my disease would become in the process.
Through all of this, I could tell certain people in each system were tired of my micromanagement. However, seeing all the mistakes made by each establishment, I no longer trusted that anyone knew what I needed or how to help me get what I needed. Every time I learned of a new mistake, my stress levels skyrocketed because I needed to contact the other systems to make sure they were not impacted by that mistake.
Thankfully, I found one person in each business who became my trusted advocate. I would only speak to that person and they kept me updated on their progress and dealt with my situation personally. They understood my distrust of the system and left messages while I attended class so I knew my situation was being handled appropriately. Without these people, I cannot imagine how my symptoms would have continued to progress and where I would even be today.
This situation exceptionally highlighted to me the trust that the health care system imposes on patients. Without a way to truly connect clinic, pharmacy, and insurance, and without a way for the patient to easily check on updates, the patient is at the mercy of people who are not personally connected to their case and may make small mistakes that have immeasurable consequences. Unfortunately, I see none of this changing until someone in power needs to deal with a situation similar to this, or until healthy people become cognizant of the constant struggles of those of us living with a chronic disease.
Until then, I implore those in any part of health care to have patience. Try to understand the constant worry and stress we have in trying to treat our disease. If we make a mistake or forget to tell you something, please remember that we have to work with everyone in our team which can include many places we need to update with insurance, medication, or personal changes. Beyond all of that, we are trying to lead normal lives while managing a chronic disease which probably causes daily strife that we must overcome. After a fight with one of my past physicians, he told me something I will never forget - he must try to remember that when he sees me, it's a normal workday for him; when I see him, I may be experiencing one of my worst days due to sickness. You may be stressed during your workday, but imagine needed to live with this every day and needing to interact with this health care system while trying to stay healthy.