Part 1: In the Eye of the Storm
If I’ve learned anything from our horrific rollercoaster ride through the perilous world of cancer, grossly inadequate insurance, and deep emotional pain it’s that long before one comes to the point of considering a bridge dive into concrete and traffic, there’s almost always help within walking distance, in my case found less than 15 feet away.
Although I’d long admired the enormous contributions social workers make in our society, I never reached out to one for help myself and waited far too long to grab a human life preserver, a savior especially trained to help people like me cope with a wickedly complicated, terrifically expensive, and emotionally debilitating situation that is American health care today.
I was a least smart enough to previously seek the help of both my minister and doctor as I descended into what sure looked like hell from my perspective, and each was hugely helpful. Everyone I knew did what they could, but after months of intense psychological pressure and sleep deprivation, I still began wobbling like a boxer almost beaten senseless, no referee ready to call the fight.
Just before I was KO’d in the 14th round, a medical social worker trained to help traumatized basket cases like me came to the rescue of one who was also feeling hugely inadequate as a caregiver. Carol Sherman, social worker for the UT Health Cancer Center, might not be able to cure cancer as our doctors work diligently to accomplish, but did much to guide a very shaken and disturbed senior citizen through a process most of us are destined to experience on one end of life’s rope or the other. Regardless, we commonly refuse to acknowledge the proximity and likeliness of attack, an invisible threat and most real terrorist no wall can protect against, a condition that consequently leads many of us to build our own psychological barriers that only blind.
Sure, it can be a very dark and disturbing path, but come walk with me a spell anyway. I’ve learned much of great utility though enormous distress well worth sharing, rest stops and tricks of the trade, and now endeavor to make many eventual journeys potentially much easier than ours, either as a patient or caregiver. This missionary zeal also keeps my mind off of things I just can’t change and must accept to focus on what I can fight like mama tiger protecting her cubs, and you can too, if you know how and why you should.
I now feel most compelled to conduct a show and tell for those who are as I once was, blissfully ignorant in the face of monsters hiding just around the corner, one of them I never suspected and long considered a friend, TRS, the initials short for the Teacher Retirement System of Texas, an entity we could have protected ourselves from too had we only known how to play the game and the harsh landscape separating rhetoric from reality. I don’t mean to imply that TRS is composed of demons out to torture the sick and injured, but it’s most important to understand the true nature of any organization involved with health care today is often most skillfully covered in a very attractive but extremely thin veneer under which exists a lot less quality than what appears on the surface.
One basic problem with TRS mirrors the core problem in American health care today: enormous needs meeting expensive care unsupported by existing finances. The dismal scene reminds me of an old joke I’ll repurpose here. TRS is so broke it can’t pay attention. This isn’t actually true for the immediate future thanks to a recent infusion of cash in the last legislative session coupled with harsh reductions in medical benefits for many TRS retirees. These recent actions allow TRS to continue providing benefits for now, and from what I can gather from the outside looking in, TRS will stand on shaky legs for another spell, but both long and short term problems haunt its existence, permanent remedies painfully elusive and subject to political whim. If you want this in TRS’s own words the system “does not currently meet the definition for actuarial soundness.” In simple language this means if TRS continues along the same road, the financial bottom will fall out eventually as it almost did most recently, unless something changes in the future.
TRS, for those not familiar with it, is the largest public retirement program in Texas. On paper and in self-generated profile TRS exists to protect and serve many more than just teachers, but in our case allowed a dedicated, caring and very much loved school secretary to transition from comprehensive medical insurance in place for decades into an illusion of health coverage, right on down to the provision of an insurance card that every health care provider accepted without question, but we came to find out was often barely worth the plastic on which it was printed.
I discovered this fact on my own about a week after my wife had a cancerous tumor removed from her mouth and a feeding tube inserted so that she could get the nourishment to live while healing, yours truly now on the other end of the tube multiple times at all hours of the day and night, one of many new chores in my life, but an extremely important commitment we all sign up for when we promise love and loyalty “in sickness and in health.” I’ve most recently learned love grows even stronger when illness threatens it, one of the good aspects in our new journey together, a story with many peaks and deep, dark valleys, some occurring within minutes of each other.
One perfect example of quick dramatic shift from bad to good occurred most recently, a month after TRS booted my wife out of her health insurance completely, a delightful New Year’s present it punctuated with blunt force inaccuracy in a letter beginning “As requested…” insinuating we somehow asked to be kicked into the gutter.
I reacted by finding new insurance for my wife on the federal government’s web site that listed only one provider. Although we paid a monthly premium of $1,145.17, a most common response to presentation of our new document was, “Sorry, we don’t take this insurance,” almost as if I presented a crude chunk of cardboard with “Mutual of Baghdad” printed in crayon.
Upon our most recent insurance denial, just one in a long line of them, I told the obviously pained receptionist who could easily see my wife’s difficulties and my concern that I’d pay myself for any charges required for treatment. Since Mary’s illness after radiation and chemo required cancelling our last specialist appointment, I was ready to ransom a total stranger to get much needed care and guess this desperation appeared obvious. I’ve long known my emotions are read easily by many, making me a terrible poker player, but often having benefits too, as I suspect in this case.
And that’s how we soon met Dr. Eugene Son, who informed us his services on this day would be at no charge. The compassion I saw in this young doctor’s eyes had warmth I could almost feel and we soon saw it was followed by acute professionalism. The lock on the insurance door and the bright light at the end of the tunnel occurred within five minuets of each other, something I’ve learned is not all that uncommon, especially with doctors who seem to be as sick of insurance companies as we are.
I first discovered the huge gaps in our previous “insurance” when we were informed post surgery Mary would also need chemotherapy and radiation treatment. After a series of web-based written communication often bordering on gibberish because it was so loaded with insurance jargon, I finally learned the insurance company wouldn’t pay as we expected, my wife’s TRS provided insurance covering only a small fraction of the enormous bills.
We came to find out TRS records inaccurately indicated my wife had Medicare Part B. My wife didn’t understand it was critically necessary and didn’t have it, and then the whole insurance illusion collapsed under the weight of enormous bills almost always associated with cancer treatment. It was at this juncture, deeply fearing the hospital would soon refuse to continue treating my wife, I lost the ability to sleep through sheer terror and went to see my doctor. Since she’s also my wife’s primary care provider, our doctor was familiar with a big part of the problem, but not yet aware of my secondary fears, ones I didn’t share initially because I wasn’t certain I could pay her either.
Upon daily arrival for radiation therapy to Mary’s mouth and throat, a grueling affair even under the best of circumstances, I additionally feared for over three weeks some bill collector would block our path and demand toll to cross the threshold, Charon at the River Styx. Each morning before Mary received treatment I prayed in abject fear and then quietly sighed in huge relief when these prayers were answered, but still felt like a sneak thief crawling over broken glass toward a distant goal. Once her therapy started I knew- at least on this day-the love of my life and best friend would be cared for, her very serious disease contested by a first-rate institution full of amazing people of all kinds, from volunteers to exceptionally skilled doctors.
But what would tomorrow bring?
As it turned out, I was partially the victim of very bad advice given by a close friend who is also an RN with decades of hospital experience. Seeking knowledgeable inside advice I asked my friend for guidance about being unable to pay the huge bills accumulating in figures so large I stopped looking at them, also terrified and confused by murky qualifiers and subscripts that often made as much sense to me as hieroglyphics.
My RN friend advised silence and feigned ignorance, explaining correctly that the lag in time between the hospital becoming aware of insurance denials and actual treatment would most likely allow us to escape through the financial back door before anyone was the wiser, and then I could rush straight to the nearest bankruptcy attorney to at least protect the roof over our heads while saving my wife’s life in the process. Bad advice or not, it seemed the only viable option at the time, and I took it.
While partially accurate due to the Kafkaesque nature of insurance and medical billing we’ll discuss at much more length later, my friend’s advice, while well intentioned, was still terrible. I unnecessarily went through weeks of self-inflicted terror based on a completely inaccurate assumption. When I finally approached Ms. Sherman, asking if I could provide information on a strictly confidential basis and then did, I was told that no matter what, treatments would continue as “it wouldn’t be ethical” to stop them, part of UT Health policy focused on the patient first at all times from my direct experience. We were safe for the time being. Her treatments would be completed.
I slept without prescription help for the first time in weeks, but this is just a small part of a journey still in progress we’ll take together through the heart of American health care with a definite Texas twist.
Up Next: Insurance Math-When One Plus One Equals Zero