Family Stories

I've been asked to share a bit about our journey with our daughter Vienna's IBD/Chron's Disease diagnosis over the past 3-4 years. Where to start... the first words that come to mind are emotional and financial devastation, distress, anxiety, depression, and helplessness. As a parent and caregiver raising a child with IBD there is a feeling of extreme lack of control over the situation or its outcomes. Specifically, I'd like to share how this relates to the challenges we faced financially battling our insurance company endlessly for the only viable treatment options. After almost a year of fighting for a diagnosis, ER visits, hospital stays, begging doctors to "check again", testing, repeating testing and procedures, we finally got her diagnosis. We had to move 4 states away to finally find a Pediatric GI doctor that would listen and not just label me as "crazy" and an overreacting mother. We had to split our family up. Vienna and I in Montana and her dad and brother in Oregon. The travel costs back and forth, paying a mortgage and a monthly rental, lost wages, all added up quickly. I was no longer able to work as I was full-time caregiver and trying to keep our girl alive. She had lost 10 pounds in less than 2 weeks at this time and could only keep down water and bone broth that I was spending days on end making. My mental and physical health rapidly declined. Little did we know this would not be the hardest part of the journey. The battle was just beginning.

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It was decided quickly that we were to try the biologic drug Remicade. It's a medication to treat severe active Chron's Disease and is done via infusions in the hospital once a month. Even though the GI doctor recommended starting the infusions asap we struggled for approval from our insurance company. More time lost, days and weeks on the phone with the insurance company, doctors offices, basically the never-ending loop that you're stuck in trying to move what feels like a mountain. Vienna was approved and they started the infusions. The drug was effective and we were starting to see her come back to life. She was gaining weight, color was coming back into her face, and her hair/nails were starting to grow again. That was until the botched infusion happened with a relatively new doctor she was seeing as we were trying to establish care back into Oregon. He started the infusion at double the rate and double the dosage that she was receiving in Montana. Vienna went into anaphylactic shock. I watched as my baby girl was gasping for air, her breathing almost completely blocked. I'll never forget the look of terror on her face. They pulled the infusion from her, put her on oxygen and injected her with albuterol. She later recounted to me that she felt sure she was going to die. Once you have an allergic reaction to a biological drug you can no longer use the drug for treatment. We currently have a lawsuit with the hospital in Oredon for the malpractice that occurred. Between travel expenses (hotels, flights, food, etc) and lost wages and additional hospital bills we were out of pocket $44,328. This was a major setback in her treatment. We had to move on to a new drug. There are only a handful of drugs approved for treatment in pediatric patients with Chron's.

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The next drug that was recommended was Humira. It's an injectable drug that I was able to do at home subcutaneously. The insurance company would only approve 2 injectables per month. The drug had not reached therapeutic levels in Vienna at that dosing and was failing. She was stuck in a severe flare and needed the 4 injectables per month, 1x weekly as recommended by her GI. The battle with the insurance company continued. We fought from both sides. Her GI and nurse spending hours of their days on hold and on the phone battling the insurance company. Myself and my husband doing the same from our end. The insurance company refused to pay for more than 2 injectables. I sat in the Walgreens pharmacy line tears streaming down my face as the pharmacist told me I could pay for the other 2 injectables out of pocket. Out of pocket is $7,299. I sat there faced with a decision that nobody should have to make especially those that pay astronomical amounts of money into insurance premiums. Where is the help for people like us? Doing quick math on this I knew that this decision would financially bankrupt us in a short amount of time. So we're forced to forgo medical care due to costs. That forces us to move on to our third drug for Vienna. Keeping in mind that when we run through the handful of drugs available for pediatric patients we will then be facing last resort options that are unfathomable for a child that has yet to reach puberty. Surgical options, colostomy bags, etc. We were enraged. This was yet another egregious injustice. The last drug we tried with ended her in the ER 4 times in one week. She had all the listed rare side effects from the Entyvio. We had enough and stopped all the treatments. The next drug option is only approved for age 18 and older so we anticipate more battles with the insurance Company and more financial devastation.