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.