Dealing with insurance and confusing policies and procedures can often be one of the major stressors of someone who is living with an incurable illness. We rely on our treatments to help us live the best life possible, which means dealing with insurance companies, pharmacies, hospitals, doctor’s offices and infusion centers. There are plenty of instances when we find that someone in a back office somewhere hasn’t done something in time which means we cannot get our treatments on schedule. This could be because the prior authorization wasn’t sent, your medication was accidentally given to another patient on the same drug and they thought that they could replace it in time for your infusion, but that backfired on them and you’re left to pay the price. Maybe your infusion center told you that they were in network, but you later found out that representative was mistaken and now you’re being charged for an out of network service that costs tens of thousands of dollars.
If all of this sounds like I am listing off a series of worst case scenarios to you, well, I am.
Unfortunately, all of these things have happened to me first hand. I have cried on the phone to my insurance company, begged for humanity and understanding that the fault wasn’t my own and that I trusted the word of the company who was responsible for giving me information I can’t possibly access to. I have relayed information back and forth between companies to make sure that my claims were being processed correctly and made over 70 calls in a day to right a wrong that was easily preventable but it just fell through the cracks. I’ve learned to do all of this and take on so much responsibility in the process of my infusions and the administration of my medical care because of the trauma I have experienced. I vowed to never solely rely on companies who don’t know me, my case, or my illness the way that I do. I’ve learned that no one can or will advocate for me better than I can for myself.
This of course wasn’t’ something that came natural to me, but after a few major scares, legal battles and winning my cases, I felt that I had no choice but to arm myself with the knowledge and know-how to protect myself from future hardships. I knew I had to be able to take steps to prevent these mistakes from happening again. I vowed I’d never be turned away from another infusion because paperwork wasn’t sent on time when that was something that was entirely preventable.
I have talked to so many people living with autoimmune diseases that have been through similar processes and suffered countless setback and it breaks my heart to hear these stories repeated over and over again. I don’t think that many of us realize how much power we have. First, we feel at the mercy of our illnesses, then, we feel at the mercy of massive corporations who unfortunately are not making their money by protecting our interests. I always preach about how we are not to blame for our symptoms and we cannot hold ourselves responsible for attacks that are entirely out of our control. However, we MUST instead take responsibility where we can and one of the places I find to be most beneficial for me is to take complete responsibility over quarterbacking the process of my insurance claims and making sure that my treatment days run smoothly with no surprises.
This means setting a reminder for myself to call my infusion center six weeks ahead of my scheduled infusion and making sure that the necessary documentation for a prior authorization of my treatment is sent to my insurance company in enough time for them to approve it before my infusion date. I also verify with them that they have remained in network and can provide me with their current tax ID number so that I can relay that information to my insurance company when I call them to make sure the paperwork is received 10 days after it is sent and that all looks well on their end. Then, one week out from my infusion, I call my infusion center to make sure that my medication has arrived, or will arrive before my infusion, and I confirm again that I am coming, which day I am coming, and that I do not give permission for my medication to be given away in hopes of someone else’s arriving before I can get there.
Unfortunately, sometimes other people’s medication cannot arrive in time for their treatment days and so the infusion center will use what they have and reorder that person’s infusion medication to replace it. While I understand that the patient isn’t at fault and I wouldn’t ever want someone to have to go without, the reason I take all of these steps is because I’ve had that happen to me and it is incredibly upsetting. As much as I want everyone to have their medication on time, it cannot be my medication that solves that problem for them and then passes it on to me. While I love the pay it forward idea, it only works when the person whose medication is used can receive the new order on time. That was not the case when it happened to me and I suffered greatly because of it.
That is why I do my very best to share what I know and encourage everyone to take these steps. While I wish we were able to live in the luxury of not having to worry about these things, having a disease is another full time job whether we like it or not. We aren’t paid in dollars and cents, we are paid in time- we gain minutes, hours, days, years of our lives that we may not have had access to if we chose to remain untreated. Sometimes it feels completely defeating, sometimes it feels like I know absolutely nothing, and other times, when I fix something that felt insurmountable, when I have saved myself trouble that was just around the corner, I feel empowered and unstoppable.
While a lot of what we go through feels unfair and it isn’t something that anyone should have to do, taking responsibility for something I can do for myself in regards to my illness is something that makes me feel good. I feel so much less at the mercy of others and it feels like I am my own guardian angel. No one who processed my claims is there for me to collapse into when the system fails me. They don’t know I have had Jack take the morning off work to drop me off at my infusion, I’ve put work projects on hold to allow for my days of recovery afterwards, and my sadness when I realize that I have to go through the emotions of an infusion day all over again very soon. As so many of us know, no matter how we are doing overall with our illnesses, infusion days are emotionally draining. The reality of sitting in that chair and pumping medication into you that is meant to help you but hasn’t been around long enough to understand it’s long term effects is a leap of faith that comes with an anxious lump in your throat and the resignation of knowing you just have to hope and let that be enough for now.
My point is this… there are places where we can take more control and take power over the things that happen to us in this process. This has been an area where I have done that and not only do I feel a drastic difference in my stress levels, I feel so much purpose while helping other people to do the same. Whether it is filing for a copay program to help with your out of pocket expenses for your treatment, knowing the ins and outs of your insurance policy, how to advocate for yourself and document your calls with companies who may come calling for money you don’t actually owe them, I am here for you! You don’t have to face this alone and you don’t have to feel helpless like I once did. While there is so much to learn and it truly is like speaking another language, once you do learn it, everything becomes a little less scary and we are able to take the necessary steps to set ourselves up for success, and protect ourselves even if somehow those steps still don’t cover it all.
Dealing with insurance and billing mishaps is a preventable evil. Let knowledge be the weapon you use to fight for yourself and always make sure that your own interests are protected. If you need help or have questions, please reach out to me. As always, thank you for reading and being by my side on this journey. Knowing you’re here makes a world of difference.
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