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.  

The Value of Doing Nothing: Same Thing, Different Feel

It’s interesting to me that the same task can feel stressful sometimes and relaxing others. It really shows that it’s not about what I’m doing, rather it’s how I feel when I’m anticipating or doing it. It’s how I judge the task in the moment.  

Needing to cook dinner after a long workday may feel like one more burdensome thing that needs to be done, while spending hours in the kitchen baking or creating a new dish on a weekend might be a therapeutic activity resembling meditation for the focus and relaxation I feel.

The same can be true for a bike ride or jog where I’m trying to perform at a certain pace or complete a set distance.  Doing the same distance with no expectations might feel like an easy activity.  What amazes me is the pace might only be a mile or two less per hour for it to feel relaxing.  While I love pushing myself and feeling strong for the accomplishments, I’m realizing that including the slower pace at times is better for me than continuing to push myself. It’s also clear that periodic no-movement days are good for me.  

When someone asks what I did all day and I say nothing, I often realize it’s not true.  I did do something. Most of the time, I’ve showered, I made something to eat, I napped, and I watched television that entertained me. 

I’m realizing I really need to think of these slow-moving episodes as necessary recovery and recharging.  I need to do this not because I’m deluding myself or making excuses, rather I need to place value on what my body needs to keep performing. While this is true for any human, it’s especially true for me given Multiple Sclerosis presents itself in my life as almost constant fatigue. Because it’s constant, I need to push through the fatigue to work, be active and participate in life. This is common for many people with MS and other chronic conditions. 

It’s often a source of frustration and requires intentional kindness toward myself to focus on what my body can do instead of what it can’t.  The knowledge that I can push myself to the point where it triggers my immune system to start attacking my brain and spinal cord is scary. The reality is that I put a lot of effort into self-care, and my immune system continues to attack periodically. 

Thus, it’s mandatory for me to include relaxing and recovery in my life to set myself up for the best health prognosis possible. This isn’t unique to me or anyone else, it’s just that the consequences may be more severe if I skip rest days. Still, it feels shameful to have days where I accomplish very little. It feels lazy, and laziness is ingrained in my psyche as one of the worst things a person can be.  

It’s imperative that I view recovery days as productive. If I view it as a wasted day, it stresses me out. If I view it as necessary and good health management, I can relax into the day and enjoy it.  There’s value in doing nothing.  When I recognize doing nothing as an accomplishment that improves my health,  I lose the guilt and feel better about my myself.