Friday, November 18, 2016

Why Must It Be So Damned Hard To Be Sick?

I’m fully aware that the concepts of “fair” and “unfair” are constructs of the human mind. Politely stated, stuff happens. We then process that stuff and sort it into any number of mental files, “fair” and “unfair” being but two of the many choices in the filing cabinets we all carry around in our heads. Yeah, it seems unfair that I got slammed with the MS stick, but so did 400,000 other people in the USA. It’s also unfair that I wasn’t born into British royalty, but, given my proclivity for drunken shenanigans, the royal family might think it unfair if I was. Then again, I’d probably fit right in…

That said, I do think it is unfair that people socked with chronic illness are forced to not only deal with the ramifications of their diagnosis but also with a medical infrastructure that often seems geared towards making being sick as difficult as possible. It’s as if having a terrible illness isn’t quite enough; most patients soon find that on top of their condition come layers of impediments that seem designed to make being infirm an exercise in frustration, aside and apart from the effects of the disease itself. Primary among the contributors to the difficulties encountered by the chronically ill are insurance companies, pharmaceutical companies, and the doctors who treat the illnesses themselves, an interlocking triumvirate that oftentimes seems intent on destroying the peace of mind of those unhappily forced into its grip. Let’s look at each of these elements individually, and explore the many fangs of this three-headed beast. 

First, we have the insurance companies, which are generally perceived as big, boring, faceless monoliths filled with human automatons making love to their spreadsheets and actuarial tables. The reality of the insurance industry is a bit different, though. Insurance companies are professional gamblers who look at the entire world as one big casino. By fastidiously crunching data accrued over centuries, insurance companies place bets tilted in their favor on almost every aspect of life, including life itself. 

In the case of the health insurers, the primary wager placed is that the money paid to them by the mostly healthy people they insure will far outweigh the money the company needs to pay out when the bet goes wrong and their customers get sick. Like any gambler, insurance companies hate to lose. When their wagers go south, they’ll shamelessly employ any number of unsavory tactics in an attempt to minimize their losses. For patients forced to deal with insurers who aren’t keen on making good their part of the wager, this means having to navigate intricate bureaucracies who play by rules largely of their own making, utilizing tactics designed to discourage and dismay those trying to get their fair due. 

Primary among these strategies is simply to delay making payments in the hopes that the patient will grow so incredibly frustrated they’ll eventually throw up their hands and give up. Insurers do this by putting as many obstacles in the way of the patient as possible, in the form of a labyrinthine paths to payment filled with large amounts of paperwork, endless requests for additional information, and a wall of bureaucracy meant to intimidate and appear impenetrable. Is there any less savory prospect than having to get on the phone with an insurance company representative to try to resolve a claim that the insurance company has arbitrarily denied? I’d rather try to brush my teeth with a flaming stick. 

In the nearly 15 years since my diagnosis, I’ve spent countless hours on the phone doing battle with insurance company demonoids intent on frustrating my every attempt at having them make good on their obligations. Requested paperwork, once delivered, is often mysteriously “lost in the system”, requiring it to be refiled all over again. Claims are passed from department to department in an apparently endless loop, with each department introducing a new set of rules and requirements. The phone reps themselves are not empowered enough to actually take any actions, meaning that most of what is said to them is simply wasted breath. Aargh! 

The key to getting eventual satisfaction (not to mention the money owed to you) is to never give up, even if it feels like your brain is about to blow through the top of your skull. In the words of Winston Churchill, "Never surrender!" If the phone rep is unable to give you a satisfactory answer, demand to speak to their supervisor. If that supervisor is uncooperative, demand to speak to their supervisor. Eventually, if it seems that you have run out of people to talk to, threaten the nuclear option: tell them you are going to get your state insurance regulators involved. This will usually lead to a miraculous resolution of your case. Unless of course you live in a state with lax insurance regulations, in which case you might try making hyena noises into the phone. 

Of course, one of the reasons the insurance companies are so loathe to make payments is the outrageous costs of medical procedures and pharmaceutical products. This brings us to the second member of our triumvirate of torture, the pharmaceutical companies. Contrary to popular belief, the pharmaceutical companies themselves are not inherently evil, they just smell that way. The first thing to keep in mind when thinking about the pharmaceutical industry is that pharmaceutical companies are not in business to produce cures. This may be difficult to grasp at first, but truer words were never spoken. Except maybe “never eat enchiladas after midnight”. The indigestion will kill you, and you've got enough problems. 

All of the major pharmaceutical companies are public companies, meaning that their stock is traded on the public stock exchanges. As officers in public companies, pharmaceutical executives are mandated by law to be beholden to their shareholders, not to the patients taking their drugs. The importance of this point cannot be overemphasized. Given this reality, a company making billions of dollars on a drug designed to treat a disease could potentially run afoul of their stockholders (and the law) if they came up with a drug that cured the goose that lays perpetual golden eggs. This is a classic conflict of interest. 

The tremendous profitability of "successful" pharmaceutical products has led Big Pharma to engage in many morally questionable activities. Believe it or not, more money is spent on marketing pharmaceuticals than is devoted towards the research and development of newer and presumably better drugs. Since the pharmaceutical companies themselves fund most late stage medical research – they are the only entities with enough money to do so – negative research results are often suppressed and never see the light of day. This means that the research our doctors rely on when making treatment decisions is inevitably skewed towards the positive. Supposedly independent research has often been found to have actually been written by ghostwriters in the employ of Big Pharma. The pharmaceutical lobby is one of the most powerful in Washington, practically ensuring that most of these ills never get properly addressed by our lawmakers. 

Having said all of that, the most insidious and pernicious way the drug companies impact patients themselves is their ongoing practice of bribing doctors to prescribe their drugs. Naturally, these bribes are dressed up in all manner of tuxedos and ball gowns, taking the form of “honoraria” or “consulting fees”. Doctors are paid copious sums to “educate” their fellow physicians, most often over expensive dinners at fine restaurants. Physicians are invited to “educational symposiums” which take place at luxurious resorts where most of the education seems to come in the form of 18 holes on a golf course. In one of their latest ploys, pharmaceutical companies ask doctors to fill out surveys which earn the physicians points that can be redeemed for all sorts of luxury goods (click here). 

How and why are these practices not illegal? Got me. Before MS forced me to retire, I worked in the music industry for one of the largest multinational entertainment companies in the world. If our company was caught paying radio stations to play the records we produced, people would go to jail. Now, what is more harmful to society, music companies paying off DJs, or drug companies paying off physicians? 

Thankfully, patients now have a resource by which they can find out just how much money their doctors are taking from pharmaceutical companies. The website “Dollars for Docs” makes it easy for patients to look up their doctors and find out exactly how much pharmaceutical company money their doctors pocketed from August 2013 to December 2014 (click here). I’m happy to say that my neurologist doesn’t even allow pharmaceutical company representatives into his clinic, and the fact that he doesn’t appear on the Dollars for Docs database confirms this. If your doctor does show up on the database and has pocketed tens of thousands of dollars of pharmaceutical company largess, it’s certainly within your rights to question them as to how these payments influence their treatment decisions.

Which leads us to the final element in our trilogy of torment, which, tragically, is often our physicians themselves. This is by far the most heartbreaking component of the obstacle path patients with chronic illness must navigate, as our doctors should be sources of comfort and care, not necessary evils. I consider myself extremely fortunate to have as my neurologist a man I not only respect but for whom I also have a very real affection. And I’ve every reason to think that the feelings are mutual. Sadly, in my contacts with literally hundreds of MS patients since I started this blog, I’ve found that the clear majority have a negative relationship with their neurologists, with feelings ranging from mild apprehension to utter disdain. 

As patients saddled with chronic illnesses, we are forced to enter long-term relationships with the doctors we choose to treat our conditions. As with any long-term relationship, it’s important to choose a partner who will be a positive in your life. And yes, I did say partner. The patient-doctor relationship should be a partnership, not a dictatorship. The patient should be respected and educated by their doctor, not talked down to or given orders without any explanation. 

Oversized egos seem to be abundant in those who don white coats and endeavor to be healers, and I suppose a certain amount of ego is only to be expected given the often daunting professional path taken by those who choose to treat intractable illnesses. But, contrary to what many of them seem to believe, doctors are not gods, and the fact is, just as in any profession, there are those who are great at their jobs and others, not so much. There’s an old joke that asks “What do you call someone who graduates from medical school with a C- average?”. The answer: “A doctor”. 

For patients with serious illnesses, it’s easy to feel at the mercy of the person we desperately hope will relieve the burden of our disease. Sadly, I’ve heard far too many stories of supposed MS experts giving patients horrible advice, putting them on treatments clearly wrong for that particular patient, or leaving the patient themselves to make serious treatment decisions while providing little or no pertinent information upon which to base those decisions. 

My first MS neurologist, the man who gave me my diagnosis, was I am sure a brilliant human being, highly respected in his field. Unfortunately, he had the bedside manner of The Great Wall of China, without the scenic views. I was shocked when at the end of our first appointment he handed me four videotapes – each promoting a different MS drug – and told me to go home, watch them, and come back with a decision as to which drug I wanted to try. I was so confused I could barely get a word out. At that point I had barely wrapped my mind around the fact I was seriously ill and knew absolutely zilch about Multiple Sclerosis. I was overwhelmed, frightened, and certainly in no position to pick a drug based on some slickly produced video presentations. Needless to say, this neurologist did not stay my neurologist for long. 

I do realize that in many parts of the country and the world MS specialists are hard to come by, so many patients have a limited choice of doctors. Even in these situations, though, it’s important to make sure that your questions get answered, that your fears and concerns are addressed, and that you are seen as a human being, not merely a body harboring a dread disease. Always remember this: your doctor works for you, not you for them. Just like anybody else you pay for service, your doctor is under your employ, not the other way around. As your doctor’s employer, you are free to fire them if you are not satisfied with the job they are doing. Now, that doesn’t give you the right to be disrespectful, impolite, or tyrannical, and even under the care of a top-notch physician dealing with MS can be a messy affair, both emotionally and physically. You owe it to yourself, though, to become an active participant in your treatment plan, and that means partnering with a doctor you can trust and respect, and whose motivations aren’t subject to suspicions of self-interest. If your current doctor fails to meet those criteria, I suggest you start looking for a new one. 

In short, being sick sucks. Not only do we have to deal with the ravages of disease itself, but also with all sorts of ancillary BS that makes life for those unfortunate enough to be stricken with chronic illness exponentially harder. Between the insurance companies, pharmaceutical companies, and some physicians, the impediments faced by those with serious illnesses can be almost impossible to confront. And yet confront them we do, with a quiet heroism that goes almost completely unacknowledged. 

The myriad obstacles thrown at people with serious illness are by and large beyond the comprehension of the healthy, as one cannot fully understand just how dysfunctional the modern medical establishment is until one is thrust into the belly of the beast.. We who are members of a club that none of us wanted to join share insights and experiences that are ours uniquely. As WC Fields famously said, all in all I’d rather be in Philadelphia…     

For those readers who might enjoy an MS essay of a more philosophical bent, my friend Mitch, who maintains the MS blog Enjoying The Ride, wrote a wonderful piece on acceptance in the face of ongoing disease progression (click here).     

RIP Leonard Cohen, who died last week at age 82. One of my favorite songwriters, I think he’s pretty much the man I always wanted to be. Though this isn't one of my most cherished of his compositions, this song is quite apropos for the times in which we now find ourselves…  



  1. Where do I begin? I could write a reply as long as your blog entry. You hit all the salient points and still there are more. George and I thought we were making educated, careful choices in his MS treatments. In the end, we would have been better to just believe in Voodoo. Unfortunately, when there is no knowlege of what causes a disease, MS, there is often no treatment that is valid. His blog entries tell of the many treatments that ended badly, and the most harmful were Western medically based. Keep up the exposes, Marc, but you better get a few bodyguards because now you are on the hit list of the most powerful lobbyists in the world.
    Love ya,

    1. So very true, Hilda ... voodoo would probably be a safer option.
      I read your post on xaidw speaks and believe as you ___ it will ALWAYS be inconsolable to have this disease and to grieve the loss of our loved ones especially when their suffering becomes unbearable. Hey George ... Think of you often. Dee/OH

    2. Hi Hilda, yes, many of the treatments offered to us by the "experts" are about as useful as Santeria. At least the MS doctors aren't slaughtering any chickens, but, hey, maybe that's the missing ingredient…

      Like Dee, I think of George often (daily), and still half expected to be him when the phone rings.

      As for my needing bodyguards, so be it. As FDR said about those who opposed him, I welcome their hatred… After all, I'm only speaking the truth… I guess that CAN be a very dangerous thing…

  2. I daresay you have exceeded your previous postings in every way! You hit the nail on the head, and your wordsmithing abilities are more skillful than ever. Thank you once again for your brilliant insights and excellent information.

    1. Geez, Connie, your harsh criticism is cutting me to the bone. Kidding, of course. Thank you so much for your very generous words, I hope my writing is even half as good as you make it out to be…

  3. The hyena noise suggestion was the best. The system works well. As long as you don't get sick. So sad, but So true. I'm very thankful for my neurologist and her assistance in my pursuit of hsct, which I will embark on next month.

    1. Briana, you're quite right. The system is wonderful as long as you don't get sick. And I have a feeling that's only gonna get more so in the coming months.

      Wishing you the best of luck on your upcoming HSCT, please keep me updated on how things go… Where are you having the procedure done?

  4. All so true, including the underlying message via the Leonard Cohen song, you clever dog, you!

  5. Marc, your post is brilliant. When I think of the practical considerations involved in your being able to deliver such a piece, I am blown away. Indeed, it makes the writing acquire additional power. From a selfish point of view, I want you to continue doing this type of writing forever, but I know the personal cost is high. It brings me great sadness to think that such a fine mind as yours is kept from its full expression by miserable MS.

    1. Hi Judy,

      Unfortunately, I know you can relate. Yes, I am physically unable to do as much writing as I used to, but I must admit to a bit of laziness as well. Also a lack of inspiration, as staying in the apartment more and more exposes me to less and less outside stimuli, which in turn provides less food for thought. MS, the gift that keeps on taking…

  6. Marc, wonderful essay! Of the points you raise, the one that patients can see immediate benefits from is with their personal physicians. Push them to do their job better, and failing that, fire them!

    Also, thanks for the shout out to my blog. Lots of your readers have visited in the past few days.

  7. Hey Mitch, glad some of my readers have swung over to your blog to enjoy your writing.

    As for firing your doctor, hey, if you get good enough at it one day you might wind up President…

  8. Marc
    Great post. A MS patient deals with these issues full time, change drs, if you do not have good relation of questions an answers. Ask your insurance company and pharmacy questions on why they are playing DR if they switch you to a generic, or other medicine. They absorb and work different.
    My partner and I were part of a panel of thirteen Ppms people in Chicago. Your name came up Marc, during discussions. Interesting seeing all these people in the same room with some type of assistive device to get around with. Did note that anyone who stopped their DMT, was not able to walk. Genentech sponsored. They were not to forthcoming with questions asked. And their drug, only at 23% with many opertunistic infections, compared to 30% with less side effects that Copaxone has.
    Turning to pure biotin, with scale to measure 100 mg three times per day, as FDA is requiring whole new trial. Duplication of what's been done. If it helps, great.. Neurologist watching over, glad I chose to be on real Biotin.
    So Marc, another layer that is involved. Choices that research takes, and knowing their secrets to make even more money

    1. Hi Joey, thanks for the comment. Interesting that your group of PPMS patients was populated with some folks who remained walking while on DMT's. Wouldn't this indicate that the DMT's are effective in PPMS, contrary to popular belief? Interesting.

      As for Biotin, I, too, and taking it. At the suggestion of my naturopath, I'm using Natural Creations High-Dose Biotin, which comes in 100 mg capsules. Compared to most of the compounded stuff it's quite inexpensive, and my naturopath says that it's of very high quality. You can do a search on Google, but I think it's even available on Amazon. Would save you a lot of effort measuring, etc.…

  9. Have shockingly only just discovered you! I only read ActiveMSer (not that I am very) and Bart's Gavin Giavononni. SPMSer. Good luck! XX