The Cost Of Ankylosing Spondylitis
I'm always talking to others about the physical, emotional, and mental toll of ankylosing spondylitis. But what about the financial? The cost of getting diagnosed, finding the right treatment, and managing pain easily gets up to thousands of dollars. Keegan and I through the years have accumulated debt from this. The debt overwhelmed us at times. However, we recently hired a financial advisor and since then have found techniques that help our unique situation.
The cost of diagnosis
Keegan wasn't on insurance when I was in graduate school and he was at his worst. He was working at a bagel shop 10-12 hours a day with only one 15-minute break and in so much pain he could barely walk some days. I knew something was wrong, but we couldn't afford him going to the doctor. He was making minimum wage and I was taking out student loans to pay for graduate school. Looking back, I wish we would have taken him just to know what was going on, but we waited until I was done with school so he could quit his job.
But things didn't get better with rest and we decided to get married (sans wedding) to get him on my insurance. The first big bill we were hit with was from a series of blood tests and X-rays to hopefully get a formal diagnosis. At the time, I had no idea what a deductible or out-of-pocket maximum meant. I just knew we needed to pay almost $1,000. I panicked and paid it all with a credit card.
Paying off medical debt with a credit card. I didn't know that health systems would let me set up a payment plan for such a high bill, or even apply for assistance. I found that out years later.
The cost of treatment
We got a call from his primary care doctor-definitively, Keegan suffered from ankylosing spondylitis. They referred us to a rheumatologist. Unfortunately, we came to not trust this doctor, and I did my own research. I called our insurance and found out that Johns Hopkins was in-network. One of the top doctors researching AS was taking patients. I knew no matter the cost, I wanted the best for Keegan.
So we traveled from Harrisburg, Pennsylvania to Baltimore, Maryland once every 3 months. The gas, mileage, and copays added up quickly. Each quarter the doctor assessed Keegan's symptoms, pain, blood work, and mobility to see if the treatments were doing what we hoped. Time after time we learned they didn't. The doctor asked if we wanted to try a biologic. We weren't comfortable with the side effects, so we tried some alternative therapies. Eventually, we moved to Philadelphia and found another rheumatologist who convinced us to give a biologic a try. We found out after almost a month that the one she recommended wasn't "on the formulary." This meant our insurance wouldn't pay for it until Keegan tried 3 other biologics and showed no success.
Thinking that getting a biologic would be as simple as getting an antibiotic from our local CVS. It took 2 months of preauthorizations, the process of Keegan's doctor getting an "okay" from the insurance to cover the medication, to getting the medication to our front door. It required a special pharmacy with special shipping.
I panicked about the cost of the biologic without getting all the information. The insurance wouldn't tell me approximately how much it would cost because they needed a bill to run the numbers against. How could I budget for this medication? We brought up the cost question with Keegan's doctor and she recommended we call the company that made the biologic to see if we qualified for a cost savings card. Luckily we did and we only pay $5 a month for it.
Then came 2 total hip replacements, totaling over $120,000 in hospital bills before insurance kicked in. I didn't realize the first bill we received from the hospital hadn't yet applied insurance and I sobbed. How in the world would our little family manage? We had a 6-month-old and were making ends meet. This could break us.
Not calling insurance and/or the hospital to ask the status of insurance on the bill. This would have calmed me down immediately to know insurance was still in the process of applying our benefits to the cost. I didn't know that bills come out of hospitals faster than insurance companies work sometimes, especially in the case of surgery. Luckily it only took an additional week to get the actual bill.
The cost of pain management
We read online success of other AS patients taking medical marijuana, so we were quick to try it out. It seemed less scary than going on a biologic. However, getting a card and paying for it wasn't something we considered. The initial appointment to get certified (the word in Pennsylvania they use instead of a prescription) cost $250. Insurance doesn't cover medical marijuana, so it's all out-of-pocket. The medicine costs about $150 a month.
Asking for help
With over 7 years of getting diagnosed, trying treatments, and managing pain, our debt was to a point where I wasn't comfortable managing our money. I cried. Luckily a friend at work recommended a financial advisor. They have helped us immensely by taking a look at our debt, income, and strategizing with us to get us paying everything back with paying the minimum interest.
Not only that, our advisor helps us set aside money and anticipate future medical cost. Keegan's AS isn't going away, so this is a crucial part of our budgeting. Of course, it'll take a lot of patience and persistence for us to stay on budget, but we're doing so now with confidence and much less worry.
Do you use the word disability to describe your AS?