The Cost of Leukemia

If all I had to do was take a pill everyday, living with Leukemia wouldn’t be so bad. In fact, it might even make being married to a job that saps my creativity a little more bearable. Unfortunately, that’s not the case. Unfortunately, I add to my expenses every. single. month. Blood work here, doctor’s visits there, prescription refills in between, it can be overwhelming.

At this exact time a year ago I had a difficult time trying to get my medicine. I had set up delivery through my insurance company’s (Aetna) specialty pharmacy. At the time it sounded like a good idea. They would automatically ship my medication to me overnight when they saw that I was about to run out. The idea was that it would keep me from the whipping of dealing with trying to pick up a prescription and the possibility of everything going wrong (like it has so many times before). When it came time to send my prescription, the insurance company (who is supposed to be on top of things) told me that my medicine would cost somewhere in the vicinity of $2,000, after my insurance was applied. I talked to a couple of different people on separate occasions before asking for a supervisor to intercede. Of course, it was around the holidays so the supervisor was on vacation. I had to wait until the beginning of the new year to get my meds and needless to say it wasn’t through the specialty pharmacy. Leave it to the local CVS to actually get what I owed right. It cost me $100. I never had any problems after that. I ditched the idea of a specialty pharmacy and went to the neighborhood pharmacy store every time. I even applied for co-pay assistance and got the cost down to $75/month until I changed medication (which bumped the price back up to $125).

Yesterday, the beginning of a new year (meaning that I haven’t used my Health Saving Account yet), I went to pick up my prescription at CVS. I walked up and told them my name and the whole bit. Like usual, they were blown away by the cost of my medicine.

“Wow, this costs almost ten grand,” the tech exclaimed.
“Yes, it’s outrageous isn’t it? I’m going to pay for the whole thing.” 

It’s the only time I actually feel like a baller. 

“Just kidding. I haven’t been to this CVS before, I need to give you my insurance card.” 

I handed over my card and they took it to the back to process it. The tech brought it back to me and said,

“Even with your card, this medicine is still expensive.”
“What is the total cost,” I asked.
“$3,057.57,” he replied.
“There must be some sort of mistake. I’ll have to call my insurance company to see what’s going on.”

 I walked out of the store and sat in my truck as I called the number on the card. “Here we go again,” I thought. I talked to a representative who looked over all of my information before determining I would have to talk to someone in their specialty pharmacy. I explained the situation all over again after the transfer.

“Last year I refilled this new medication twice and it didn’t cost me over $120,” I explained, “I don’t understand why I’m having to do any different 45 days later.”

 All of the decisions that I made for my health insurance started to pour over my mind. Did I make the mistake of choosing a different plan with the idea of having a lower deductible? Did I really know what I was doing? Is my plan different from what it was last year? I thought I had a Health Saving account last year. I know the company had put in $500 for me a year ago. Maybe I chose something different. Last year I didn’t receive a debit card to use for my health costs. This year I received a pre-loaded debit card with $900 on it to use towards my health expenses. I must have made a mistake.

I started to get sad. If I changed my plan, it was to save me money in the long run, not to have all of these upfront costs at the beginning of the year, simply because one month of my medication is more expensive than most people’s yearly medical procedures. A huge cloud engulfed me and my head started to hurt.

“I can’t really see all of the details of your plan here,” the representative informed me. “It looks like the total cost for you to get this refilled by our pharmacy won’t be the $3,057 that the local pharmacy told you. I’m seeing a cost of $1,637.”
“I don’t know what to do. That means I have to come up with $700+ to fill my prescription,” I replied. “I’m going to have to call my benefits advocate to see what I did wrong and if there’s anything I can do. Thank you.”

 And with that we hung up.

I was so saddened. I didn’t want to have to go through this again. I’m just so sick of never knowing how much things will cost, and then not being able to pay for it. I didn’t know what else to do but to be bummed out. I had spent so much of the past three months taking my medication religiously. I wanted to go back to MD Anderson in a couple of weeks and see the progress that I had made. I wanted to prove to myself that a renewed dedication to keeping myself healthy and well was vindicated. I didn’t want to have to be off of my medication again because of some enormous amount of money I couldn’t afford upfront. It made me feel like I’m in a constant chase position. I can’t get ahead. I can’t get the wheels rolling. I can’t finish school. I can’t afford my medication/labs/biopsies/dr. visits (or I’m at least always behind). I feel like a prisoner to a job that serves no true purpose to what I eventually want to do with my life. I felt so depressed.

I spent a lot of my day in prayer. I thanked God for my life, for having a job, and the fact that I have insurance to turn to. I asked for a renewed spirit amidst the heartache, for a fresh perspective on how things will come together. I asked for him to remove the dark cloud that was weighing me down and for a sense of optimism to know and understand that no stupid deductible is beyond the control of God. I felt better about things at the end of the day and I was able to find hope in the way of a new co-pay assistance plan for Sprycel (which may provide me $100/month if I qualify) and a reimbursement help from Destination Access (which may help with the costs if I qualify). It’s not guaranteed that I will get that relief, but I have to try something in order to get my medicine. I don’t want to wake up every day knowing that I haven’t tried. If push comes to shove, I can save for the difference in the month to come.

That’s a glimpse of what it’s like to live with Leukemia. I can deal with the occasional nausea or weakness. Dealing with the costs and the occasional hopelessness I feel about moving forward in my life is something far greater and tougher to deal with. But I have no choice. I will graduate college one day. And all of these moments of pain and heartache will probably make me cry as I walk across that stage, something I never would have done had I continued along a path of self-entitlement. This is why I have this blog.