Married to an Advocate

What life is like watching and supporting a significant other dedicated to helping patients

My wife asked me to write a blog about what its like being married to an advocate. At first, I was overwhelmed. I didn’t really know what to say or what to write about. But the more I thought about it, her helping patients and advocating on their behalf has just been so ingrained into our day-to-day family life that I had stopped noticing. Normal for her is: fielding questions from our families about everything from medication access to Medicare plan possibilities, answering calls at 10 PM from a random patient, insurance, or friend-of-a-friend that had nowhere else to go, and explaining the EOB we just got to me, among many other things.

To be honest, I wasn’t even really familiar with the term advocate until NAMAPA was founded. I didn’t know there was a specific term for helping people navigate the crazy healthcare system we have in the U.S. It makes sense though, and I’ve seen that there is a huge gap that exists in the care patients receive and their understanding of the healthcare system oftentimes. Who do you go to when your insurance says you can’t get a medicine that you need? Or, even worse, you can get a medicine that will improve your quality of life but you’ll need to pay tens of thousands of dollars to get it. The number of times that I’ve watched my wife sit on the phone for hours and refuse to take “no” for an answer, until miraculously she gets through to the right person or gets the answer she is looking for, is superhero-esque. This is the kind of thing that makes someone an advocate.

So, a day in her life is hard to nail down exactly. Every day is different in general, with work, family, extra-curriculars, etc., so advocating is just another thing that is thrown in there. It gets load-balanced with everything else, at night after the kids go to bed, early in the morning over coffee, or during breaks in the day, she accomplishes an amazing amount in the name of helping someone. All of this without any expectation of reward, with someone suffering a little less or having an improved quality of life acting as more than enough payment. This isn’t about her, this is about advocating and fighting for an insurance company or manufacturer to cover medication for a person many times she’s never even met. One day, she told me when I got home from work that she had at some point managed to get a family friend’s cancer medication covered during the day, after this person had spent months trying to figure out what they were going to do. It was no big deal, just another day.

There are tough and frustrating times, too, don’t get me wrong. Advocating often takes determination (or stubbornness, whichever you prefer) far beyond when a normal person might give up. I’ve seen her elated when cases that she has worked for over a year are finally approved after knocking on metaphorical door after door of different organizations for insurance coverage, medication grants, and programs that most people don’t even know exist. I have also seen defeat when she has exhausted all possible avenues, but it’s never over for her. There is an immediate mind shift to how best to communicate to a doctor what she has tried and ask for next steps.

I also realized, its not just her. She has surrounded herself with other advocates all fighting the same fight. These individuals pour themselves into this life without hesitation and when they get the chance to do it together, you’d think they’d have won the lottery. Not long ago, we had a long and frustrating conversation with my parents, trying to explain how Medicare works and what coverage they needed while looking at the pros and cons of many plans. How someone is supposed to make that decision without an informed party walking them through the process is beyond me. But together with another advocate, they were able to determine best care scenario and then explain the options to my parents. I’ve also seen it happen in some cases, the people you are advocating for will blow your phone up, almost being a little over-bearing because the process is so scary for them. No patient should have to feel that way and that logic is fuel to these advocates fire and passion.

But ultimately, being in healthcare, no matter your role, is all about helping people and that makes you an advocate. The healthcare system is incredibly complex, flawed, and messy. I’m not even sure how people make medical decisions like choosing an insurance plan without being married to someone who does this everyday, thankfully I married a nurse. It continues to amaze me how much my wife and everyone that founded NAMAPA give back to others and make sure people are taken care of. Their willingness to create a shared body of knowledge that will help all healthcare workers, regardless of role, know and understand more about medication access can only result in better patient care at the end of the day. Being an advocate isn’t as sexy as being an actual superhero, but it’s probably about as close as you can get in real life with the continuous opportunities to change so many lives for the better.

 - JR Johnson, husband of NAMAPA’s President, Elizabeth Johnson