(c) GoGraph / lhfgraphics
In my 11-year career as a patient with a progressive disabling disease I’ve been subject to an almost countless number of frightening medical procedures, the prospect of any one of which would have made the healthy me ruin my pants. Despite the horrid nature of some of these procedures – from needles in the spine to having tubes the size of fire hoses stuck into my veins to tests involving electric shocks of varying intensities – I’d have to say that the source of some of my most prolonged periods of agony have been long and drawn out battles with insurance company telephone tormentors who seem trained by the spirit of Marquis de Sade himself to extract as much psychic pain as possible while doing their god-awful best to avoid providing even the merest dribble of satisfaction.
Given my numerous nerve-racking experiences dealing with the insurademons, it was with great relish that I read the heroic man versus insurance company saga of Mr. Dave Bexfield, which was recounted in the August 3, 2014 edition of the New York Times (click here). I’ve been acquainted with Dave, at least in the virtual sense, for several years through our interactions on various Internet sites, forums, and email. We finally actually spoke to each other last week, as I was preparing this piece. Dave is the creator of the website ActiveMSers (click here), a vital resource for MS patients looking for inspiration and info on how to stay as physically active as possible. The site includes Dave’s blog, interactive forums, tips and tricks, and reviews of all kinds of gear designed to help people with MS stay in the game, so to speak.
Back in 2010 Dave underwent HSCT (hematopoietic stem cell transplant), a stem cell procedure that, in a nutshell, gives MS patients (or patients with a variety of other so-called autoimmune disorders) a new immune system by first destroying their old one through the use of powerful chemotherapy agents, and then resetting it via a stem cell transplant. For more info on the procedure, please refer to my last Wheelchair Kamikaze post, in which I wrote extensively about HSCT (click here). The treatment successfully put the brakes on Dave’s very aggressive relapsing remitting multiple sclerosis, but also left him $200,000 in the hole, a situation which precipitated an epic four-year Battle Royale with his insurance company.
In order to fully understand the majesty of Dave’s victory over his insurance company, I think a little background is in order. Back in 2005, Dave experienced his first MS symptoms, in the form of vision problems and strange sensory experiences. A few months later he suffered his first full-blown relapse, which resulted in the entire right side of his body going numb. After going through the usual diagnostic workup (MRIs, spinal fluid analysis, etc.) he received a verdict of MS. Over the next four years, despite being on the disease modifying therapies Copaxone, Rebif, and finally Tysabri, Dave’s disease slowly progressed, with intermittent relapses, until very suddenly a number of severe relapses put his MS progression into hyperdrive, leaving him at times barely able to take a step.
Just as he was reaching the point of desperation, Dave learned of an National Institutes of Health (NIH) sponsored HSCT study being conducted at the MD Anderson Cancer Center in Houston, Texas. He was accepted into the study, and was deemed the ideal candidate because of the very aggressive nature of his RRMS and his corresponding diagnostic test results. Unfortunately, after receiving this good news came some bad. Due to cuts in the federal budget, the National Institutes of Health, though still involved in the study, could no longer pay for the treatment. If Dave was to participate he would have to cover the entire $200,000 price tag himself. Yikes, to say the least. Dave lobbied his insurance company for financial assistance, but his pleas were rejected outright because of the experimental nature of HSCT treatment. Ultimately, Dave managed to cobble together the $200,000 by draining his savings and through the generosity of his immediate family.
Dave underwent HSCT in 2010, and though the treatment itself was no picnic, it did successfully slam the brakes on his multiple sclerosis, which had turned so aggressive that Dave believes the treatment saved his life. He’s had absolutely no relapses or further progression of his disease in the four years since undergoing HSCT. Of course, there’s no guarantee that his disease won’t mount a counteroffensive at some point in the future, a possibility which he acknowledges, but what MS patient wouldn’t gleefully accept at least a four year truce with their disease, during which the progression of their illness was stopped cold, free from drugs or any other form of treatment? You can read more about Dave’s HSCT experiences on his website (click here).
One might think that this would be the happy end of the story, albeit one with quite the hefty price tag. Just a few months after his stem cell treatment, though, Dave’s insurance company suddenly decided that it would indeed start paying for some forms of stem cell therapy for multiple sclerosis patients, though no such therapy had received any kind of official approval for this use. Dave contacted the company in an attempt to get reimbursed for his treatment expenditures, but was told that he was too late, and that the timing of his claim was simply “unfortunate”. Thus began a gargantuan four-year battle between Dave and his insurer, one which found Dave, with dogged (some might say maniacal) persistence, going to extreme measures to try to prove his case. Through the magic of Google he managed to uncover confidential files that directly contradicted much of what his insurance company was telling him – that they were merely following government mandated guidelines, and thus really had no choice in the matter – and Dave even went so far as to file a Freedom Of Information Act request to uncover yet more evidence of malfeasance on the part of his insurance company. You can read a more extensive, blow-by-blow account of the cage match between Dave and his insurance company on his website (click here).
During his four year struggle with the Insurazombies, Dave contacted a consumer advocate reporter at The New York Times, David Segel, who calls himself “The Haggler”. The Haggler lobbied the insurance company on Dave’s behalf, at first with no luck. Some months later, Dave then provided the Times reporter with some newly uncovered and extraordinarily damning evidence against the insurer, and The Haggler once again contacted the insurance company’s top executives, this time with proof that the company had lied not only to Dave but to the New York Times as well. As if by magic, a few days afterwards Dave found himself having lunch with both the President and the CEO of the $2 billion a year insurance company, during which they informed him that they had, by the good graces of the universe, suddenly experienced a change of heart; not only would they pay Dave the approximately $200,000 cost of the HSCT procedure (which, incidentally, is less than they would have spent on him by now for FDA approved MS medications if he were still taking them, which he certainly would have had he not undergone HSCT), but also the interest that the money would have accrued over the past four years, which came to just about another $200,000! Yes, the end result of Dave’s single-minded crusade to get his due was a check in the whopping amount of slightly over $400,000. Score one (or 400,000) for the good guy…
This David Bexfield versus Goliath story is an extreme example of the trials and tribulations many patients with chronic diseases face when trying to deal with their insurance companies. The problem boils down to a basic conflict of interest: though the insured are the insurance companies’ customers, they are also the determining factor in how much revenue these companies ultimately generate, even if they operate as nonprofit organizations. The less money an insurance company has to pay out to its customers, the better its bottom line. In a world where the profit motive trumps all else, this dynamic can set up some dicey situations for sick people trying to get the best health care possible, and even for those just trying to get the basic necessities required to live with their disease.
My own experience with health insurers has been almost schizophrenic. At times these companies have been incredibly cooperative, yet on many other occasions they seemingly took their tactics directly from the handbook of the Spanish Inquisition, making the prospect of dealing with their telephone representatives as appealing as an invitation to a potluck dinner at Hannibal Lector’s place. I can identify no rhyme or reason behind these vacillations in the behavior of insurance companies. In fact, many times they seem counterintuitive.
For example, this past fall, my insurer unhesitatingly approved my being treated with a rarely used and extraordinarily expensive drug, to the tune of $150,000 (the treatment turned out to be an absolute disaster, which you can read about by clicking here). Yet, only a few months before, this very same company had me alternately begging, screaming, whining, wailing, bellowing, whimpering, and very nearly bursting several very important blood vessels while trying to get approval for a new wheelchair, without which I would have had to change the name of this blog to Bed Kamikaze. The twisted and convoluted course of my six-month struggle to get a piece of gear that was an absolute necessity at times had me questioning my own sanity as well as the very notion of a just universe, and whether or not I might somehow have been drafted into the dyspeptic nightmares of a sadistic surrealist who had eaten one too many enchiladas right before bedtime.
My wheelchair saga played out over an innumerable number of phone calls, and it often seemed as if the Insurafiends were inventing new tactics and excuses even as I was talking to them. My wheelchair provider was “out of network”. Yes, but I had out of network coverage and was willing to pay the portion not covered by my insurer. Paperwork faxed to the insurance company mysteriously disappeared in the Bermuda triangle that apparently existed between my wheelchair vendor’s fax machine and theirs, and when by some miracle it was finally received on their end (with confirmation), it was inevitably lost “in the system” or found to be lacking some key bit of information or arcane equipment code, thus requiring the process to begin all over again.
Once the paperwork was in order, the Insuraschmucks suddenly decided that the specifications of the chair I had chosen were outside of acceptable parameters, and so couldn’t be covered. Mind you, it was the exact same model of chair I’d been using for the past five and half years, only with some added functionality made necessary by the increased level of disability I had accrued through the intervening years. I was told I could appeal the decision to some higher level of Insurabastards, which of course I did. After violating their own self-imposed deadlines for decision-making several times, the senior Insurapricks deemed that, yes indeed, my chosen chariot would be covered thanks to my physical decrepitude, as vouched for by my neurologist. And then came the folly of all follies; the Insurascum insisted that they couldn’t reveal how much money they’d reimburse until the chair was actually ordered, but how could I place an order for the chair until I knew whether I’d be on the hook for $1000 or $20,000? Arghhh…
In the years since my diagnosis, I’ve learned that all of the convoluted tactics employed by the health insurance companies to keep from paying legitimate claims can be boiled down to three words: delay, delay, delay. Their goal is quite simply to wage a war of attrition, frustrating the claimant with technobabble, feigned incompetence, and arbitrary rules and regulations until the sick person gives up due to frustration, physical and mental exhaustion, or the mistaken belief that they are somehow in the wrong. The insurance companies have nothing to lose by playing these games; the longer they hold onto your money the more interest they earn on it, and in fact many if not most claimants do eventually wave the white flag after months or years of interminable mindbending insurabullshit.
All of this corporate hornswaggle would be bad enough if it were employed only on the hale and hearty. However, the hale and hearty aren’t typically the ones filing claims with their health insurance companies. During the trench warfare in which I was forced to engage in order to get a new wheelchair, in times of desperation I would remind the Insurabeasts on the other end of the line that they were talking to somebody who was just about three quarters completely crippled. And that this cripple was only trying to get himself a new wheelchair, which due to my progressing crippledness had become an vital requirement. It wasn’t as if I was trying to get them to pay for a spa vacation in Shangri-La. No matter, rules are rules, even when they are invented, bent, and broken by the very people spouting them.
So, three cheers for Dave Bexfield, the man who managed to topple Goliath while also landing a solid right hook on the chin of his disease. Give thought, though, to those poor souls who through no fault of their own don’t have any health insurance, and are left to somehow fend for themselves in the world of the Multiple Sclerosis Industry and its hyper inflated prices. I’m sure those in countries outside of the US, who don’t have to deal with private insurers, have their own horror stories and headaches, both literally and figuratively. There just seems to be something sadly broken in a world where sick people have to actively fight not only to try to get better, but often just to maintain their sickly status quo. Good grief…
Thank goodness for attitude...ReplyDelete
Yes, it's all about attitude. It may sound trite, but a good attitude can make a bad situation better, and a bad attitude can make a great situation worse. When dealing with the insurers, perseverance is also a key. It's very difficult to maintain a good attitude when faced with insuracrap, and displaying a bit of bad attitude can sometimes even be helpful, but more often than not it will just be met with greater resistance. You've just got to keep pounding away…Delete
Good on you and Dave for prevailing. Yes, attitude counts for a great deal. So does having a good support network. But so, too, does, the personal reality of what one is dealing with. As I pick my battles in my own trench warfare, sometimes it is simply whether I can prepare my food or attend to personal hygiene with little left over to fight for anything else. So I'm deeply in awe of what you two have been able to pull off. Hats off.ReplyDelete
Dave's victory makes mine pale in comparison. What he pulled off is truly remarkable, all I did was get what was my do. Mr. Bexfield exhibited wile and ingenuity, all I did was refuse to take no for an answer. I knew that eventually they'd have to pay for my wheelchair, the only question was how difficult they were going to make it before finally capitulated.Delete
As you say, this damned disease often leaves us with little resources left over from the fight to simply get through the day for any extraneous battles. Again, I think the insurance companies figure that into their wicked calculus. They've got it down to a science.
I agree with Judy, hats off! I don't even have the energy to discuss ANY of this with my insurance company. I bought my forearm crutches myself. I also bought my own walker and wheelchair. I get less than $12,000/year on disability, but the only thing I spend money on are Kindle books and food, so, yea, I felt using the energy elsewhere was worth it. If you have an advocate, they are worth their weight in gold, so buy them dinner tonight.ReplyDelete
I follow ActiveMSers, so I was aware of this. In fact, I got the referral for my forearm crutches from one of Dave's articles!
Sue, that's an awful lot of money to spend, especially when you're on a fixed income. Your situation just illustrates how upside down the situation has become. The mere thought of having to deal with an insurance company rep on the telephone is enough to drain the energy right out of you. It's truly astonishing how hard it is to be sick. Those in the healthy world simply have no idea, even those who are the most compassionate and empathetic.Delete
Glad to know you are familiar with Dave's site, and that you have actually put it to good use. He's a good guy…
Once again you hit on a subject that most of us are dealing with.ReplyDelete
I like that you have come up with 5 different names for our competitor:
Insurazombies, insuraschmucks, insurapricks, insurascum, and insurabeasts. As you said it is all insurabullshit.
Glad you enjoyed the article, but sorry that you could relate. I actually did some self editing and took out a few of my more profanity laced epithets for the insurance companies. Just trying to keep things R rated, though at times I've uttered strings of X-rated talk over the phone when the insuradroids drove me over the edge…Delete
Marc. you've captured it all in the perfectly timed (and comedic) escalating descriptive names for the insuracowpats we have to deal with. Go Dave!ReplyDelete
Hey, love your word for the insuramonsters. And yes, go Dave!Delete
Sadly broken indeed. Thanks Marc for the enlightening post.ReplyDelete
You're very welcome, I only wish that the situation were such that I didn't have to write it.Delete
Unfortunately, I think that you have pegged the tactics of the insurance companies perfectly. The more they delay and mislead, the less they have to pay. And the worse off patients are from battling their diseases, the more likely they are to give up sooner. It's certainly not the way that health care should operate--patients deserve better!ReplyDelete
Not only the patients deserve better, they deserve the best. And that goes not only for the insurance companies, but for the entire Medical Industrial Complex. Instead, and obscenely, we are looked at first as customers, or consumers, or numbers on a spreadsheet, rather than human beings dealing with almost unimaginable hardships. What a world…Delete
From a completely biased perspective, thank you Marc for your eloquent words. Since the NYT article was published, I have heard from so many people who have struggled with their insurance companies, from drug coverage to physical therapy to seeing specialists. But the number one issue: trying to get walking aids or a wheelchair. Unbelievable.ReplyDelete
Hey, some words from the star of the show. I've no idea why the insurance companies are quicker to approve hyper expensive drugs than mobility aids. Probably because the hyper expensive drug claims are being submitted directly from doctors offices, most of which have staff devoted to such unseemly endeavors. When it comes to mobility devices, though, it's either the vendors or the patients, neither of which usually have the level of expertise needed to skillfully navigate such choppy waters…Delete
Thanks for chiming in…
What also is acerbic is blue cross blue shield & others are non profits! Why? Can I be a non profit too?ReplyDelete
One would think nonprofits would focus more on patient care, Karen. But the bottom line rules the day. That said, because many health insurers are nonprofits, they have donors, and most of those donors presumably have beating hearts. If you've got a compelling case, those donors will care and may very well come to your aid.Delete
Ah the sad states of bureaucracy abound. I find myself cheering ever more for the little guy battling institutional inertia. Now that I have a slight break from battling insurance thanks to Tysabri's Active Source program, I and my wife are working on the State of MD's crazy foster care/adoption system for medically fragile children. Just imagine the fun of taking on medical and foster care decisions made by people with little or no medical background.ReplyDelete
I need to take notes from you and Dave. If that does not work, I may need to change my name to some version of "Dave." I've heard David with a sling should have been favored over a likely limited vision Goliath anyway. Step two will be finding the modern sling to fell giant institutions.
Marc- Since being diagnosed one year ago and stumbling across your blog when I was diagnosed..I have to thank you for the time and research you put into the information you're providing. You are at most, unbiased when it comes to talking about treatments, research etc. I have always liked that and it has kept me as a reader of your blog now for the past year. That being said, probably my biggest struggle in the past year with MS has been my insurance company...Not my vision problems, or chronic fatigue, or forgetfulness etc. I actually worry MORE about testing and treatments being allowed or covered by my insurance, than the progression of the disease itself. It's a shame for most of us who have been diagnosed with an illness outside of our control having to fight with our insurance companies for things. Kudos to Dave for fighting this fight...he deserved the chance to find out if the stem cell treatment would help him (how is it any different from a cancer patient receiving chemotherapy, not knowing if the treatment will save their lives or not?) More of us need to start advocating for change as we know things are only going to get harder with our insurance companies. If you ever find yourself in a position for such a thing...know you have others who would support and join in with the cause! Thanks again guys!ReplyDelete