Necessary Medications and Politics: Part 2

I wrote a post last month describing my frustration at receiving a call from my pharmacy saying my health insurance coverage would no longer cover my main MS medication.  If you’d like to read Part 1 of this story, check out Necessary Medication and Politics: The Devastation Falls on Patients.

Here’s part 2 of the story:  Today during my lunch hour, I spent 40 minutes on the phone plodding through a total of five phone trees that required me to enter my address, phone number and date of birth repeatedly. I explained my situation to four different customer service representatives of my health insurance, pharmaceutical coverage, specialty pharmacy (for specialty drugs which are what the super expensive medications are called), and finally specialty medication coverage. The final verdict is good for me.  My medication is covered. I’m told I now have a lifetime approval for the medication.  Lucky me.  Let me repeat this, because I say this in all earnestness: I am lucky. 

I know others aren’t as lucky as I am.  The success I’ve been able to achieve in this round does not mean our system is okay. It doesn’t mean I won’t experience this in the future for other medications or treatments.  This medication is not likely to be effective for me forever.  There are other medications that I can try when this one stops working, and I could need to go through this again.  It’s complicated, scary and frustrating to have our health riding on an unpredictable and evasive system.  It causes me heartbreak each time I see someone advertising a Go Fund Me campaign to help someone with medical expenses. 

This time, it worked out for me.  There are others that either aren’t successful in navigating the system or just can’t prevail even though they’re dogged in their efforts.  If you don’t have any health issues, please see yourself in me and in others that do.  We don’t cause our conditions, and we’re not sick because we deserve it. It’s the luck of the draw sometimes, and it can happen to anyone. 

Please know how important it is to support pharmaceutical reform – In the US, the costs of old medications continue to be astronomical because the market and insurance companies allow it.  I truly believe we will not have good health coverage in the United States until we address these out of control costs that benefit stockholders and those in high-ranking positions in pharmaceutical companies.   

I’ll share the details of my experience subsequent to my last post on this subject for those that are curious.

I waited until after my neurologist appointment and MRI results to make the call to my insurance provider since I wanted to make sure that I should continue my existing medication.  I’ve taken this medication six of the last eight years, and my latest test results indicate that it’s working for me.  The best I can hope for with this medication is that it suppresses my immune system and it reduces the frequency of MS exacerbations for me.  It’s called a disease modifying drug (DMD).  With my DMD and lots of lifestyle and nutritional choices, I believe they’ve helped me reduce having three exacerbations per year to having none in six years. 

After the call telling me it was denied and no longer covered, I contacted my pharmacy and neurologist’s office.  I asked my neurologist to find my old appeal letter and send it again to my insurance provider.  I asked them to contact me if they needed anything else to help reverse this decision. 

A couple weeks later, a nurse from my doctor’s office called. She said it was resolved and I was covered.  The same day I received a letter in the mail from my insurance company saying my appeal was canceled with no explanation. 

Today I made the call to see what the final answer was to figure out where I stand.  As I said at the beginning, it was a forty-minute call that took a lot of patience, persistence and good communication skills to navigate the system.  It may not seem like a lot of time, but it’s a frustrating process with lots of wrong answers along the way.  Each time I was given information I knew was mistaken, I explained yet again what I knew to be true and requested a reliable verdict on my case. 

The representative said that I do have a lifetime approval for my preferred medication.  I am relieved and very aware of how lucky I am. 

Trying New Things: The Rewards Usually Outweigh the Risk

I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest.  My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be. 

It’s reasonable to limit activities when you have health issues.  Addressing nutrition, rest, fitness and overall wellbeing is a full-time job.  Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen. 

Doing things outside of my routine usually involves budgeting my energy leading up to and following the event.  The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision.  It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health.  They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves. 

I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim.  Feeling like that is depressing.  Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment.  It adds to a sense of strength and empowerment.  This is one area of life where I think one can help offset the other.  It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before. 

It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot.  I bought it and planned going with a friend.  Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time.  I went on to do the trapeze class, love it, and go back many times.  I tried it, succeeded, and built up my physical confidence.

Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment.  There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me.  Picture this:  I enter a hotel ballroom where only two tables have people sitting at them.  One table with ten place-settings is full. The other has eight twenty-year-old Japanese students.  With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could.  I sat down, and then the other tables filled up around us.  I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English.  I don’t speak any Japanese.  I conversed with the one young man about professional topics to find some commonality.  While I did, it was clear the rest of the men were commenting about me and laughing at me.  They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table.  My guess is the time at that table was only about 30 minutes, but it felt like hours. 

Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster.  But I hold it up as a benchmark experience.  It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction.  It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be. 

This experience helped me build my social and emotional confidence.  Trying trapeze helped me with my physical confidence.  Both of them reduce the chance that someday I’ll have regrets for what I didn’t try.  Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward.  That reward may be for accomplishing it well, and it may be for just enduring and surviving.  Either way, we win.