3. Tenacity

According to the Oxford English Dictionary, tenacious, as I’m using it here, is defined thusly: “not readily relinquishing a position, principle, or course of action; determined.”

My wife is tenacious. Often dangerously so, especially when fueled by rage, as evidenced by the following: Years before I met her, about 40 years ago, when she was a graduate student, she was carjacked. Rather than do what normal people would do, she put the pedal to the medal, and screaming like a banshee, drove off with the guy inside the car. She refused to stop the car until she had pulled into the lot of the local police, whereupon the poor guy jumped out of the car and ran off. Later, while we lived outside Madaba, Jordan, I witnessed her accost a man who had cut her off, and dinged our little car. She, in English, berated the man for a good five minutes, explaining (I use the term nicely) how one didn’t just cut inside someone making a turn and hit their car. That taking turns making turns was the correct way to do it! Neither he, nor any of the tens of folks who had gathered to witness the spectacle understood a single word she said. Finally, yesterday, our car was hit while she was driving. Apparently, (I wasn’t there), a man in a large American pickup truck pulling a branded agricultural business trailer that had his freaking PHONE NUMBER painted on it, slammed into her rear. And then took off! So again, my wife did what normal people do. She followed him. Now, granted this guy wasn’t too bright. He took a roundabout route through town, but ended up going home. With her, on the phone with the police, right behind. Where she leapt out of the car and demanded his paperwork. He took off into his house. Thankfully the police showed up. There’s more to it, and she’s sore but generally OK, but that’s enough to illustrate my point.

So, at the close of the last thrilling installment of my story, we were going to meet my Neurologist to get prepped for my Leqembi infusions. We sat ourselves, early that morning, in his patient meeting room. About five minutes late, he burst in. He was in a tizzy. 

“I’ve never seen anything like this,” he said. “Your insurance is rejecting your treatment! I don’t know what you’re going to do now. They want you to get a neuropsych test that nobody gives anymore. I threw out all my test kits years ago. So… I don’t know.” And that was it. We were shown the door. We were stunned. (Remember what I said about the spectrum before? Yeah, this is another downside!). As we were standing in the outer office collecting ourselves, his office manager, who is a lovely man and is responsible for all insurance communication, came out and asked us into his office. We sat down and he explained to us that yes, despite actually approving the treatment, we hadn’t yet proven that I was deserving. He showed me the guidelines, and sure enough they required two specific evaluations which he said were probably holdovers from the clinical trial guidelines. 

“You need,” he continued, “to find a Neuropsychologist, or maybe even a geriatric Neuropsychologist, which we are not, to give you these tests, and then you can come back and we’ll start the process with Eisai. But,” he opined, “I have no idea where you’re going to find them. When you do, please give us a call to set up a follow up appointment.” He also offered to ask every insurance company that I was eligible for under the Massachusetts version of the Affordable Care Act what their Leqembi coverage requirements were. Which was good of him.

Thus begins a period fraught with rage, anxiety and depression. That spurred on some serious tenacity. Now, let me state here for the record, historically I’m not a really tenacious guy. Wendy is, as you well know, and I know I had to be my own advocate in getting the health care I needed, but in general, I’m much more comfortable being a nice guy, and not a tenacious one. And sometimes I get my ass kicked for that. (Figuratively, not literally.) However, rage fueled tenacity ruled the next few weeks. A look through our insurance website showed very few Neuropsychologists in the area, even looking as far away as Boston. And nobody we called had any idea what the tests we were specifically looking for were! One group did, but they were booking six months out. A call to our insurance company, who were the ones requiring this, yielded no help whatsoever.

“We can send you a list of all covered Neuropsychologists if you like.” 

“Is this the same list as I’ll see if I type Neuropsychologist into the search bar in the find a doctor section of the site?” 

“Yes. Yes it is.” One of the biggest problems with cell phones is there’s really no satisfying slam the receiver down method of hanging up. The best one can do is sigh really loudly in disgust before hitting the red button. Which you can be sure I did. Oh yes I did. There was a lot of sighing and pushing of red buttons in the weeks to come. None that bore any ripe fruit. Wendy and I were a collective mess. Not sleeping, anxious, snapping at each other, and full of rage at the STUPID injustice we were dealing with. We crossed every bridge we could think of. Nobody offered the test. Eisai could not help. The insurance company could not help. A call to the Massachusetts Health Connector did yield a list of other insurances that I qualify for, all of which cost significantly more per month, which I sent on to the office manager to check out. My PCP could not help. We did find an independent Neuropsychologist who didn’t accept insurance, who said for $3,000 he offered a full battery Neuropsych exam, and even though the test we were looking for was purely subjective and not data driven (hence the reason no Neuropsychologists give it anymore - they tend to want numbers, not impressions), he’d give it to us a part of the comprehensive exam. We scheduled an appointment for two months out. I scheduled an appointment with a social worker to try to help me overcome my depression and anxiety.

I had that appointment on the day before my 61st birthday, exactly three weeks from my last appointment with the Neurologist. Those, for those who have not figured it out yet, were not good weeks! The social worker sat with Wendy and I as we discussed our feelings of impotence within the medical bureaucracy and rage against the disease that was going to kill me (but first wipe my mind clean), and anxiety about not knowing what to do. She asked what specific tests we were looking for so she could reach out to her community for us. And then she paused. And flipped around to her computer. And found both tests online and printed them out. And gave them to me. And scored them. And printed them out with her official barcode. And handed them to me to give to the Neurologist, who could then send them to my insurance company. Easy. As. That. Tenacity ruled the day!

I made an appointment immediately to see the office manager, who was amazed that I had found the tests that easily. He promised, because it was already late, to send them off to the insurance company the next day. That was a Friday. On Monday morning, first thing, he called me.

“What did you do?” he asked incredulously, “Your insurance has fully approved the medication! They can’t even have looked at and reviewed what I sent yet! This is amazing!!!”

“I didn’t really do anything recently. I mean the last few weeks I’ve called them repeatedly, but nothing positive ever came out of it. And I’ve not called them since taking the tests. I have no idea!”

“Well, I don’t either!. But it’s all approved! So, let’s set up an appointment with the doctor right away so we can get your infusions scheduled!” Trust me here, I’ve asked no follow up questions about how/why. I don’t want anyone to look! I’m just moving forward.

The healthcare system in America is completely broken. This is not a condemnation of the Affordable Care Act, through which I get my coverage. Except for the stupid red-tape, my coverage is great (once you kick through that red tape). I’ve paid barely anything out of pocket for any of the procedures I’ve had, including surgery (Wendy too). Leqembi is a several thousand dollar per month medication that must be infused at a hospital or clinic. I am paying nothing. Not even a co-pay. The problem is that doctors are overworked. Hold times on the phone to my primary (who is not actually a doctor, but a nurse practitioner) are a minimum of 20 minutes to get an appointment. Wait times, as mentioned, to get an appointment can be months long. I’m not sure how to fix it, and am offering no solutions as it’s not my forte, only expressing my opinion that we have a very basic need that is completely shattered. It really requires tenacity and dogged perseverance to get what you need. Be tenacious and Advocate for yourselves, because you can’t really count on those who should do it to do it for you. And, if you know someone who is struggling, please help them! I have my tenacious wife to help me. Not everyone does.

Thanks for reading,

Sean