Friday, February 10, 2017

Plot Twist!?!?!

Living with a chronic illness is a constant roller coaster of ups and downs. And I don't mean just physically. There is so much else that goes on behind the scenes spiritually and emotionally that we have to process and deal with on a daily basis along with managing our physical symptoms.

Spiritually we deal with doubt, fear, worry, friends dying, holding on to hope when things feel hopeless, clinging to joy when things are crumbling around us, prayers with tears streaming down our face...doesn't mean we're not trusting that God is in control or questioning His love for us, just means that we are living in a broken world, and in dealing with broken bodies as well, sometimes feel the weight of that a bit more than we might without being sick.

There's an emotional aspect of being chronically ill, too. We deal with isolation from being unable to get out and spend time with family and friends. We have to grieve who we used to be when we lose the ability to do things we used to love. We struggle with the guilt of seeing the people we love most having to watch us suffer through sometimes relentless symptoms and be unable to do anything to help. We deal with the up and down emotions of hope and discouragement every time we want to try something new only to have yet another failed treatment option.

It's tough. No way to sugarcoat it. But we learn to live with it. Just like everyone has to figure out how to deal with whatever is going on in life, we cry, process, cry some more, then pick ourselves up and keep going. I have met many people through shared chronic illnesses and similar symptoms, and they are some of the strongest people I know. But no matter how strong we can be in the face of our diseases, there is one things that never seems to fail to do its best to defeat us...

Insurance companies.

Talk to any chronic illness patient and you are almost guaranteed to hear at least one (often many more) stories of insurance battles, denials, appeals, and living in limbo waiting for people sitting safely behind desks to make decisions that impact our lives.

I have fought multiple battles with my insurance company. Most of those have ended in us losing and being forced to pay for necessary treatment out of pocket. It's a catch-22 for me. My insurance coverage for *almost* everything is fantastic. I have a low deductible and out of pocket maximum (especially compared to ACA plans), don't need referrals to see specialists, can travel out of state for care with no pre-authorization...I know I am so blessed with the coverage I have. Yet even with the coverage I have, I have still fought for treatments I desperately have needed.

The first major battle was for my feeding tube formula 2 years ago. I had my NJ tube placed and was sent home to have a nurse teach me how to run my feeds and care for the tube. Prior to the tube being placed, I had asked for (and received in writing) my coverage for feeding tubes. We thought we knew going in what my responsibility would be and what my insurance would cover. The first issue was when my insurance company said I HAD to try one of the lowest cost formulas before they would even consider paying for a second tier option...despite that fact that NONE of those formulas were free of my allergens. I had to choose between certain anaphylaxis (milk based formulas) and GI pain with swelling and joint inflammation (soy based formulas) for a week so my nurse could document an adverse reaction and we could get a second tier option approved.

After a week of feeling awful, my nurse agreed that it was time to try a different formula. We decided to try an elemental formula that my specialist said worked well for the majority of his mast cell patients. My home care company didn't carry it, so we decided to just buy a case ourselves to try until we could find a company that we could get it from. Little did we know that would be the first of hundreds of cases that we would pay for out of pocket over the next 2 years...

In processing our request for a second tier formula, my insurance came back and said that formula was actually not covered at all under my policy...despite the confirmation I had been given only weeks before (in writing I might add) that it was covered. We showed them the documents THEIR REPRESENTATIVES sent me stating it was covered. Turns out the confirmation they sent was not for my policy but a similar plan with a different group ID. They denied payment again. We appealed and so began a year long battle that ended with an external appeal and lawyers that were unable to do anything to reverse the decision. Since my first tube was placed, we have paid for over 125 cases of formula out of pocket...and will have to buy who knows how many more as I continue to need Herman and Sherman for nutrition.

A success story of one appeal we had to go through happened just last year. Dr. Afrin and my local allergist had recommended Xolair as a potential treatment option that they felt could really be beneficial for me. My allergist filled out all the paperwork for the authorization process and a few weeks later, it was denied. Round 1 of the appeal was also denied. On our last chance for internal appeal before we would have to take it to a lawyer for an external appeal, we were able to provide enough physiological data regarding my symptoms and the benefit seen in clinical trials that we finally won the appeal and Xolair was approved! Six months after we first requested authorization, I got my first injection and had a significant improvement in mast cell disease management for the better part of 2016. In those 6 months of appeals, I had 2 hospitalizations and countless ER trips...who knows how many of those could have been avoided if they had just approved the injections the first time???

These insurance battles are draining and exhausting and an emotional (not to mention physical) roller coaster. As a chronic illness patient, it can be so frustrating to know that my healthcare is not really in the hands of my doctors, but in the control my insurance company. They are the ones making the call of what treatment options we have, what meds get approved, and if we really get down to it, how much my life is worth to them. People in business suits who have degrees in public health and healthcare administration are making decisions that impact OUR LIVES, yet they have no idea what we face on a daily basis. A simple click of the mouse and life saving medication is denied. One word typed on a keyboard and a patient is forced to choose between quality of life and astronomical out of pocket expenses. It can be tough sometimes to remember that our insurance companies are not in control of our lives...

Because God is.

With the flare I've been in recently, things have been rough. My allergist prescribed home infusions with electrolytes and IV meds to hopefully give us better control of my symptoms at home and keep us from needing to rush to the ER as often. While we hoped this would help us manage my mast cells better, the orders also began what we thought would be yet another few rounds with my insurance company. And again, we faced the denials that seemed to come in so easily...so many times...yet every time, God intervened and things became smoother sailing than we could have imagined. It was like staring at a spiritual battle between Satan and Jesus, and every time it seemed that Satan got the upper hand, Jesus would come through for a huge victory.

We had an issue with my port access and the infusion company not allowing Nick and me to fully care for my port and infusions. We thought we were going to have to jump through a gazillion hoops just so I could be allowed to be in control of what was going in and on my body. I even started looking at other home infusion companies in the area to see if it might just be easier to switch everything over. We spend a LONG frustrating week trying to get answers and resolve the issue and with many people praying. When the nurse came out the following week, I again brought up the issue fully prepared with all of our reasoning and backing of my doctor and case manager. It was resolved within 30 minutes and 2 quick phone calls. What had been a huge road block only a week before was only a minor issue that was easily resolved. The nurse said the other nurse apparently just didn't know their policies well. That may have been the case, but either way, God still came through in a big way when we didn't see how this could possibly work out.

Another issue arose over the IV medications my doctor had prescribed for me. First, no one seemed to know where the prescription needed to be sent for it to be filled. My infusion company said they couldn't fill it. Local pharmacies said it was a specialty prescription so they couldn't fill it. My specialty pharmacy first said that they couldn't fill it either, but then said they needed the order directly from my doctor who was out of town. It was a mess. We finally got it straightened out and the order was faxed over. Then my case manager got a call Tuesday evening stating that based on my insurance plan, coverage for the meds was denied. Again, we prepared for a long drawn out appeal process. When we were dealing with the formula issue, it was months before everything was settled and we had officially lost with no other appeal options. I couldn't wait months or I'd continue spending every 4-5 days in the ER for anaphylaxis or other mast cell related issues. We started calculating how much we would have to pay out of pocket if we had to go that route. I added up the total costs of my ER trips just in 2017 to present to my insurance to see if we could persuade them that paying for a $3 dose of a medication throughout the week was so much cheaper than the $6k-$9k ER trips every 4-5 days they were currently paying for. We were prepared to get my doctor and case manage involved to advocate for me. I began collecting data to be ready to go to battle yet again with my insurance company. And we kept praying.

The next morning I called the specialty pharmacy to confirm what my case manager had been told the night before and to get the appeal process started. When I asked about the status of the IV medication, the representative informed me that it had shipped the day before and would arrive the next day. I thought I had misheard what she said. She repeated herself and said the meds would be delivered to my doctor the next day (apparently there was another round of authorization needed for them to be shipped directly to me, but that was such a minor issue at this point). I asked what my out of pocket cost and/or copay would be and she told me that it was covered at 100%! I didn't even know what to say. I had her repeat everything one more time, then thanked her and hung up. It seemed too good to be true, but yesterday I picked up the meds from my doctor (or at least a partial order...we still have stuff that needs sorted out...one step at a time...). God again intervened in such a huge way we never could have expected.

The past 2 weeks have been a crazy roller coaster of ER trips and good days at home as well as moments of discouragement being replaced with hope as these insurance issues were being resolved. One of the toughest things to deal with when my mast cells are raging like they have been these past few months is how God can possibly be using this for His glory. How can my life make a difference when I'm stuck at home most days and only see the people I live with? I'll be honest, I still don't have an answer for that. But when I get these moments that I like to call "plot twist" moments where God comes through in huge ways and takes a situation that seemed to have no good answer and flips it 180 degrees into something better than we could have hoped, I'm reminded that God has not forgotten me. My life still has purpose and that's the greatest plot twist of all. That God could take my life and do anything with it is even more amazing that Him resolving insurance issues.

A few weeks ago, my mom shared this song with me and was successful in making me cry even before I got out of bed that day =P The truth in this song was exactly what I needed to hear then, and still now. God's plan is still to prosper us. He has not forgotten us, no matter how complicated life may seem or how hopeless a situation may feel. It might not always feel that way, but we have to remember that God loves us more than His own life. God meets us right where we are in our pain and suffering, and does not allow us to fight our battles alone. We learn to trust Him more when we see Him bring about these plot twists in our lives, however big or small they may be.


Life with mast cell disease (or any chronic illness) will always be a roller coaster...physically, emotionally, spiritually...that won't ever change. Unfortunately, it's not likely that our insurance battles will ever have an end in sight either... =P But God also won't ever change. And because of that truth, we can be strengthened to keep fighting and keep looking for those plot twists that remind us that not even our insurance companies can stand up to our God.

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