Sit Down Before Reading, A Memoir by Dave Bexfield
My reserved stem cells were thawing on a counter next to my hospital bed, about to be reinfused, when my health insurer called. Would I be willing to consider a different course of treatment for my multiple sclerosis? One they could fully support and pay for?
“Let me check with my medical team. I was scheduled to stay in isolation at MD Anderson for a full three weeks and just underwent days of getting my immune system ablated with five toxic chemotherapies, including one derived from mustard gas. I’ve also already undergone a spinal tap, endured a bone marrow aspiration taken from my hip, had a central line installed in my chest, and stomached a battery of invasive tests. I’m now so weak I am unable to get out of bed and need to get regular sponge baths to clean up the vomit triggered by the chemo … not to mention the uncontrollable diarrhea. Oh, and I’ll likely die if we stop cold now. What are you proposing?”
Is what I wanted to say. Instead, I mustered a “no, thank you” and went back to focusing on keeping my lunch of overcooked chicken, overcooked vegetables, and bland applesauce in my stomach instead of on the bedsheets. Two weeks after my stem cells were reinfused to kickstart my immune system rebuild—and after a few scary moments including throwing up so violently that I passed out—I had recovered sufficiently enough that I was sent home. Not home-home, but instead our temporary Houston home. I was to be closely monitored for the next several weeks and had been given two strict instructions: stay within 15 minutes of the hospital and do not be left alone. If there was any sign of fever, I was to be rushed back for immediate intervention. Me not dying depended on it, doctors insisted.
For the next year, my life was essentially Covid lockdown for one with added bonuses. You know the drill: disinfect everything, avoid people, and mostly stay at home. The bonuses? Frequent bloodwork and a host of nos. No fresh fruit or veggies, no soft cheeses, no undercooked meats, and no alcohol of any type—it was contraindicated with the antibiotic I was taking. I celebrated the end of that year with a favorite IPA (or two) right before I got my shots. Since my immune system had been totally reset, every childhood vaccine had to be re-given. After being stabbed with thousands of needles over the past five years, meh, what’s a few more?
About that time, I finally opened the envelope from my health insurer proudly crowing about all the new health coverage I would enjoy in the coming term. So, so much coverage. Just not the kind of coverage that would save people with MS. As it sat upside down in the waste basket, it dawned on me that it would be environmentally prudent to recycle such nonsense. But before I did, I flipped through the pages for grins. And then stopped grinning.
Turns out, less than two months after I was transplanted, my health insurer submitted a startling change to my policy: stem cell transplants for MS were now a fully covered benefit if part of a clinical trial. Wait, what?! Changing healthcare policy is like trying to unstick a massive cargo ship wedged in the Suez Canal or getting an anti-lynching bill passed through Congress. It doesn’t happen quickly. For this to be announced so soon after my transplant, the change had to be in the works at the same time I was asking to have the procedure covered. Their denial arguments—too unproven, too risky, too [insert excuse here]—all a steaming load of nonsense.
My healthcare organization, though, had made an unfortunate miscalculation. That being that one lone, gimped-up disabled guy named Dave wouldn’t go after a $2 billion business. Uh-oh.
The transplant worked so well—I could walk over a quarter mile unaided again—that I wasn’t so disabled anymore. And I wasn’t just a professional writer who happened to run a blog—I was a public relations expert, advertising copywriter, and former newspaper journalist with deep knowledge of my craft and my disease. I had the toolset, resolve, and grit to go toe-to-toe with anyone or anything that wronged me and my disease-fighting community. Game on.
The World's Most Expensive Wallpaper
Laura was decidedly nonplussed with my decorating choice. As I tacked up one insurance denial bill after another onto our garage wall—more than a hundred pages bleeding with unpaid expenses totaling over $198,000—I argued that she just couldn’t see the vision of our new wallpaper. She saw visions, all right, visions of a deranged husband with sharp tacks marring what had been perfectly fine drywall. But I had a plan. I always have a plan.
First, I assembled my team. In addition to a motivated army of ActiveMSers, an eclectic mix of supporters moved by my story offered aid: a former governor with experience negotiating with North Korea, the band Angels and Airwaves fronted by the former lead singer of Blink-182, a professional athlete who happened to be a champion of MS causes, a disheveled lawyer straight out of Better Call Saul, a onetime healthcare executive seasoned in disputes, and so many others. I then organized and put into play a devastating and calculated outreach: videos, speeches, newspaper articles, magazine covers, and personal letters to executives, medical directors, and board members.
The story evolved with unbelievable twists that only happen in the movies. Like the time I had a what-are-the-odds run-in at a local bar with my healthcare CEO—he knew exactly who I was; it was cordial—as friends watched on, mouths agape. And the time I had to skip getting presented an oversized novelty check on the baseball diamond of the Albuquerque Isotopes; it conflicted with a speech I was delivering for the MS Society, one that by the end had all 500 in attendance on their feet, cheering. Then there was the time my story was shared on Capitol Hill to advocate for healthcare reform, the time my gripping story was voted “fan favorite” at a medical film festival, and the time I got crowned New Mexico’s “Ultimate Insider.”
I reached for every accolade I could. It’s one thing to deny a patient, it’s another to deny a patient who runs a nonprofit, is a champion of the state, and has powerful supporters across the country troubled by the dereliction of his health care. I upturned every rock for evidence to support my case, even going so far as to contact the engineers at Unilever, the makers of Right Guard spray antiperspirant, to find out how many pounds per square inch of force were required to depress the spray nozzle. They were rather flummoxed by the bizarre question—it required so little pressure that they’d never measured it. But for this grown man, it was a daily after-shower torment, as I contorted my body every which way to spritz my armpits only to deodorize my torso
or the bathroom door.
It still wasn’t enough. Some friends, even family, started asking when I was going to give up, cry uncle, admit defeat. But if I couldn’t take on the health insurance industry armed with such a compelling story and an avalanche of supporters, who else possibly could? I begrudgingly started to prepare the nuclear option: billboards, print advertisements, and press releases. And a final dagger: deeply personal letters to the organization’s biggest donors, each one tearfully pleading for help. Even if those appeals fell to unsympathetic patrons, their frustrations from hearing from an individual patient would certainly reach the highest levels, frustrations that in time would become cacophonous.
Dogged Persistence Pays Off
Then the break happened.
In my meeting with the disheveled lawyer, he casually mentioned that my case was unique because I was on a federally approved healthcare policy instead of a private one, as Laura worked for the government. Some of my concerns could potentially be answered with a Freedom of Information Act request. The FOIA ultimately revealed, tellingly, that my healthcare organization had been far less than forthcoming about their policy decisions. When I brought this to their attention, they shrugged their shoulders. When I brought this to the attention of The New York Times, they suddenly stopped shrugging.
The result? “Dogged Persistence Pays Off With Interest” in the Aug 3, 2014 edition of the Sunday Times. After four years of persistent fighting, Laura and I were made whole—complete reimbursement, plus interest, plus taxes. And an apology from the CEO. Appropriately, the story ended not with a flurry of lawyers and non-disclosure agreements, but with a single handshake between me and him over lunch at my favorite deli. “But how can we trust you not to litigate this in court later?” he asked. I paused to reflect on the irony of the moment. “Because I said I wouldn’t. And I keep my promises.”
I had every intention of turning this improbable tale into Operation Overturn, the future best-selling memoir and Oscar-winning movie of the same name—obviously starring Ryan Reynolds. (Technically, our only resemblance is the puppy-dog eyes; his are brown, mine are blue. When I was younger and beardless, my doppelganger was Cameron from Ferris Bueller’s Day Off. Again, because of the eyes.) Every intention. After all, the pandemic meant I finally had time to sit down and pen my masterpiece. But by the summer of 2020, barely through a few paragraphs in Chapter 3, my disease had other plans.
The transplant, today considered the single most effective MS treatment in existence with a success rate as high as 80%—often paired with a noticeable reversal of disability—had totally failed me by 2015. I was a rare outlier for whom it didn’t take; Laura and I were crushed. My impressive gains had all but evaporated by then as well. I returned to taking traditional FDA-approved drugs for my stubborn MS, but in rapid succession three more disease modifying treatments failed. My disability kept ticking up as treatment options kept dwindling when, ominously, the vexing spate of UTIs reminiscent of 2009 returned, only worse. 15 UTIs in 15 months.
I thought back to our time in Houston, when life and our future seemed so promising. So hopeful. In those stressful days before the transplant, we often dined at our neighborhood’s favorite Chinese restaurant, as much for the food as for the fortunes. They were actual fortunes, not unhelpful “people find you compassionate” observations with Lotto numbers you’ll never play on the back. We saved our favorites. Laura’s top three: 1) You will be in for a challenging time, 2) You will need to be patient, and 3) Your hard work is going to pay off. I saved just one: “Your present plans are going to succeed.”
Healthwise, those plans ultimately didn’t succeed. But I recorded in the journal I was keeping at the time, with apparent bemusement, what another one of those fortunes predicted. That one day my name would be famous. I scoffed at the absurdity and scribbled in my journal, “hopefully not for some crazy medical procedure.”
Nope, it won’t be for that. But it will be for what I’m going to uncover by the end of this book. To quote an aggrieved Mike Ehrmantraut of Better Call Saul, “Whatever happens next, it’s not gonna go down the way you think it is.”
No, it definitely isn’t.
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