Prescription Coverage Drama and Trauma: It Breaks Me at Times

First, I’ll say it ended okay for now.  Hours later, I’m still feeling vulnerable and sad. Sad at my situation and sad for how much worse it is for many others.  

Step back to this morning at work.  I choked back silent sobs just wanting to get it together.  I’m in my office, standing at my desk and wiping away tears. I’ve just gotten off the phone with my super exclusive specialty pharmacy and copay assistance representative for my disease modifying medication.  I say super exclusive because this is the only pharmacy I’m allowed to use for this medication.  This is the most important medication I take that holds hope for slowing my Multiple Sclerosis disease progression.  It doesn’t cure anything, but it may keep my immune system from attacking my central nervous system as frequently as it would without the medication.  

My health care insurance changed the pharmacy I need to use.  That’s not the problem I’m struggling with right now.  Before it changed, the previous pharmacy phone rep told me that my copay assistance was denied because I’d used up all the funds for the year.  

This morning I was told that after my insurance pays the amount covered by my policy, my one-month supply of medication is $2,317.  Copay assistance provided by the manufacturer of the medication caps at $12,000 per year. The math doesn’t work out in my favor. I calculated that copay assistance will cover 4.8 months.  I need to take this every month, and that’s not even going to cover me for half a year. The rep keeps saying I need to be aware of this when I make an order because I’ll have out of pocket to pay.  

I know I’ll fare better if I stay calm and wait for final answers before getting upset.  My body doesn’t comply, and while I’m polite to the reps, I’m barely getting the words out – “Thank you for your help. What can I do?”

The co-pay assistance rep says she’ll make some calls and find out the balance of my co-pay assistance fund.  She promises to call me back by the end of the day. I thank her and hang up while choking back immanent sobbing.  

This sucks.  I hate that I have to deal with this.  I hate that my health is frustrating and I live in a nation where even with terrific insurance coverage I feel like a burden and at risk of needing to do without prescribed health care.  

My work day continues, and I talk to a few people to continue projects and discuss next steps completely unrelated to the experience I just had. I’m still wiping away a tear during one conversation and tell them, “I’m sorry, I have something unrelated I’m dealing with.” I continue to discuss the project as if I’m okay.

Within the hour the copay assistance rep calls me back and says I still have over $9,000 in my copay assistance fund.  I have no answer for why I was told that the fund was exhausted.  I have no promises that it won’t be a $2,317 debit to that account each month. I’m only assured that I have enough to provide my medication through the end of the calendar year.  For now I’m fine.

If I’m still taking this medication next January, I’ll need to ask each month if they’ve completed the “two-step process.”  She keeps saying this as if I know what that is. I finally interrupt and ask what is involved in the two-step process for ordering.  She explains it’s where the pharmacy determines the amount covered by my insurance, schedules a delivery date and then bills my copay assistance fund. Only then will they know if there is an out of pocket amount I owe and how much it is.  

I asked her if the pharmacy would call me back after knowing the amount due and let me know if my personal credit card is going to be charged beyond what I’m ready for.  She says yes. That’s what I have to go on right now. Best case, it keeps getting covered, magically the $2,317 per month is reduced after the copay assistance program pays, and I can keep using this medication next year.  Worst case, next year I’ll need to pay $15,805 out of pocket above and beyond what I pay for my health insurance.  If worst case comes to pass, I’ll more likely work with my neurologist to see if there’s another medication I can use that is covered or has a better copay assistance program. 

The details and drama of dealing with this is exhausting and stressful, and I’m sick of it.  I share this not to ask for pity or sympathy, but to spread awareness about how life is when living with an incurable disease not of my making. I wish I had the energy to advocate loudly for pharmaceutical medication reform. But it’s just too big and too much for me to do on top of taking care of my health, working full time and trying to live well. I wish I could distract myself with anger, but I’m too tired or not distanced enough to be angry. I hope to be able to do something productive with this.  I hope people sicker and less able to navigate bureaucracy can get what they need to be able to obtain the medications they need without spending down their life savings or declaring bankruptcy.  Even then, I understand our system isn’t likely to provide all they need. 

We need a better system. We need to care for our weakest and most vulnerable. I have insurance, aptitude and patience to deal with this, and it breaks me at times.