This post is long and boring, heads up. But it is a glimpse into what I have to deal with regularly, just to get the medication I need to get/stay healthy.
It's no big secret that our healthcare system is broken in America. There are so many pieces of that conversation, and I am far from qualified to speak to any of them. While I am incredibly grateful to be in a place where I can get medical care, and can afford insurance, the reality is that it is a broken system. Too often, profits reign over people, and it can be incredibly frustrating to navigate.
I have to remind myself of the blessing of medical care and insurance. Because I can grow so discouraged when I find myself in a place of fighting the insurance again. It's hard enough having to fight for my health. But then the insurance companies make it so much more difficult by denying access to the care I need. The care I know will make all the difference.
I take a specialty medication for my Crohn's. There are no generics, so the class of drugs used to treat my disease are all name brand and proprietary. And the pharmaceutical companies can charge what they want, without much to stop them. And let me be clear: I cannot afford my medication without insurance. Most people cannot afford my medication without insurance. A lot of people can't afford my medication with insurance. {Think: I hit my deductible for the entire year with one dose of my medication...and my deductible is not the whole cost of my medication}. I know a lot of money goes into the research of creating these drugs; it's an expensive process. But it boggles my mind how we haven't figured out ways to get more affordable medications into the hands of people that need them. The cynic in me knows that I won't see a cure for Crohn's in my lifetime, simply because there is no profitable incentive to pursue one.
{Side Note: the patents of many of these drugs are expiring next year...which would pave the way for generics! But there's rumor that the pharmaceutical companies are using everything in their power to stall and extend those expirations. It's a bureaucratic mess, and patients like me are stuck in the middle}.
Because I take a specialty medication, I have to have a prior authorization for it. Meaning, my doctor has to send information/labs/research to the insurance company that states why I need this medication {what it's treating, why this is the medication that is needed, etc.} And I get it; they don't want to pay the exorbitant prices! But if I don't have this medication, I will get sick, it will cause more problems, I will end up in the hospital. I have no other options. Even with the doctor sending in all that information, the insurance can {and does} still deny it. And then it goes into a 30-day peer review process, where my doctor then has to personally speak with a board of doctors on the insurance side to plead my case, present research, etc. It's why I had to do lab work and a colonoscopy, so he could submit those results {i.e., spend more money on those procedures, just so I might have a chance of an insurance approval}.
In the past, my pre-authorizations have lasted a year, so I have marked my calendar to start pushing the right paperwork within plenty of the time. Because it's not a quick process. I was unaware that my most recent authorization for my 4-week Stelara injections was only for 6 months. So when I recently received a message that my pre-authorization had been denied, I was immediately confused and panicked. When we went through this process back at the beginning of the year, it took 2 months for everything to shake out and for me to actually start getting more frequent doses {can you see now why I have been sick for 3 years?? Everything takes so much time}. And that was with me calling every week to push along every step of the process.
Another nuance is that Stelara is only FDA-approved for an 8-week dose. Meaning, more frequent dosing is an automatic denial. However, the overwhelming research shows that IBD patients have seen better results with Stelara when patients have been moved to more frequent dosing {6- or 4- week}. Which is why my doctor recommended and prescribed it. He was great and helped jump through all the hoops the insurance required to finally get me approved. And I have seen a HUGE difference in the last 6 months. It's working.
Fast forward, and because it's not FDA-approved for a 4-week dose, insurance automatically denied it again. Instead of allowing the patient to continue with their treatment. Instead of waiting for a cancellation from the patient or doctor. It's automatically rejected. So we have to go through the whole process again. I'm thankful that my doctor is willing to jump through the hoops to do it all {because some are not}. I'm thankful that the Lord orchestrated the timing so that I already had an appointment on the calendar right when all this happened so that he could step in and help. I'm thankful that he took the time to explain some more of the background, that the GI community as a whole has seen an uptick in insurance denials in the past year. That GI's across the country are frustrated and pushing back, and willing to fight.
But I am frustrated with office/admin/nurse staff that are not more on top of the process {especially since they see it happen to their patients every single day}. I can absolutely offer grace, considering all that office/admin/nurse staff have had to deal with the last few years, and I do my very best to do that. But it has been a repeated problem in this particular office, and I was spoiled with the staff in Texas who were ahead of the game, protecting their patients. This office staff has more than once made be seriously reconsider staying...and meeting with my GI is the only thing that keeps me. But most discouraging of all is the lack of kindness and compassion. When I called the office to ask questions and figure out what my options were {because I am due for a dose and run the risk of missing it while the insurance takes its time approving it}, they basically shrugged their shoulders and said "Tough luck, there's nothing we can do. You'll just have to miss a dose." I understand it's an insurance issue; but if you know what the problems are and your patients are suffering and getting sub-par medical care because of it, there has to be a better response. Kindness and compassion go a long way...
So again, I am thankful for my GI, who deemed all of this situation unacceptable and immediately went to work to do whatever he could on his end to make sure I don't miss a dose. He called the infusion center {the office/admin/nurse staff who told me "tough luck"} immediately and asked them to fax paperwork marked urgent same day to the insurance company. He asked them to find a sample dose to reserve for me, should the insurance company deny the initial pre-authorization and it has to go into that 30-day review. So as long as they can find one, I shouldn't have to miss any of my doses.
Sigh.
Fighting for my health is so much more than getting rest, eating right, taking my medication. It's fighting insurance and extending grace to unkind staff. It's being on top of all the appointments, procedures/test, authorizations, timelines, so that you can be proactive and fight for your care. It's working hard not to let all of the struggle and mess stress you out, because stress is bad for your healing. It's doing all of this to still only feel about 80% of what actual healthy people feel. It's fighting to pay thousands of dollars for an imperfect medication that gives you terrible side effects, that you deem better than how sick you were before. It's doing all of this, knowing you're going to have to do it all again in 6 months...
I'm still standing 3 years later only by the grace of God. He has continually watched over and cared for me. It is a daily battle for joy in the midst of my suffering, but He is faithful. And I cannot wait for my new body, complete healing, and never having to deal with another insurance company again.
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