Why Must Being Sick Be Such Hard Work?

Being sick sucks.

Of course, this notion is self-evident. Nobody in their right mind wants to be sick. For those who are otherwise completely healthy, even illnesses as benign as the common head cold bring with them a blanket of misery. That misery is multiplied exponentially when the disease you’re forced to deal with isn’t of the temporary variety, but instead is one that sticks around and steadily gets worse. Chronic and progressive disabling illnesses, such as multiple sclerosis, are especially cruel, as they wreak havoc not only on their victims’ bodies but on every aspect of their lives as well. As the disease progresses, hardship piles upon hardship, until accomplishing once simple tasks become daunting challenges requiring grit, determination, and sheer force of will. Putting on a pair of pants turns into an exercise in ingenuity and physical stamina; taking a shower metamorphoses into a death-defying feat. As the body becomes more and more rebellious, new methods of accomplishing old tasks must be devised, or else those old tasks must be dropped from the patient’s dwindling repertoire of the tightly entwined activities that represent normalcy and independence. Realizing that a button-down shirt has become a puzzle too complex to solve can really ruin one’s day.

Given the challenges inherent in grappling with a crippling illness, it would seem only fair that somehow the rest of the world would get with the program, and endeavor to make the life of sick people as easy as possible. Unfortunately, this just isn’t the case. On top of having to deal with all of the physical obstacles and frustrations of feeling lousy, and having to work around bodies increasingly on the fritz, chronically ill patients (or at least this chronically ill patient) are often met with a stupefying array of incompetence, insensitivity, and needless impediments, often personified by the healthcare establishment that is supposed to exist to help them. From the Byzantine bureaucratic bullshit of insurance companies to the sometimes mind-boggling incompetence of medical office staff, patients are often faced with uphill battles that can make getting proper care and needed services disheartening and daunting experiences, the equivalent of a particularly odious full-time job. Nevermind the innumerable frustrations of being disabled in an able world, attempting to navigate the medical landscape can drive one absolutely bonkers.

Back when I first came to grips with the fact that I did need a wheelchair, a notion which grew roots only after a heavyweight bout of denial, I had the not so great fortune to experience the exquisite pleasures of dealing with insurance company automatons, the folks at the other end of the line who excel at sounding entirely reasonable while spouting a line of crap longer than New York City sewer system. The insurance company brain trust decided that the perfect chair for me was one designed for indoor use only, which was completely ill-suited for life in the big city. This was at a point in my illness when I could still precariously hobble around my apartment, and the point of my getting a chair at that precise juncture was to allow me access to the world outside of my apartment door. Inasmuch as that world is smack dab in the middle of one of the busiest cities in the world, I needed a chair that was rugged, had long-lived batteries, and was relatively speedy, lest I get shmushed in the middle of trying to cross Broadway. Okay, I’ll admit that I also wanted a really fast chair because I thought having speedy wheels would be fun (I was correct), but getting around New York City does provide a need for speed. The wheelchair vendor that the insurance company referred me to apparently couldn’t give a damn about my real-life requirements, and insisted on trying to sell me chairs that were completely ill-suited for the task at hand, but were of the type preapproved by my insurance company. In other words, easy money for the wheelchair vendor.

The more I insisted on getting a chair I could actually use, the more the insurance company insisted that I was being unreasonable, and I was soon thrust into the company’s “appeals process”. Well, there was nothing appealing about it. Obviously designed to simply wear a patient down by attrition, the process was convoluted and nonsensical, as each appeal was decided upon by yet another layer of insurance company bureaucrats, thereby almost ensuring a continual string of denials. The entire exercise took on an air of the surreal, as I found myself vehemently arguing for a contraption the idea of which horrified me to no end. And I mean arguing in a very literal sense; phone clenched in my fist as I screamed myself hoarse trying to get my point across. As I generally am not a very confrontational person, it takes a lot to get me to the point of screaming, but the wheelchair madness got to where I would become absolutely apoplectic upon just seeing the name of the insurance company on my caller ID, worked into a lather before even answering the phone. After a full six months, and with the help of my neuro’s social work staff and photos documenting the cracked pavement, construction sites, eight lanes of traffic, and other realities of my urban environment, I was shocked with a phone call telling me that the insurance gods were sated by my burnt offerings, and that my appeal had been approved. Thus, The Wheelchair Kamikaze was born.

I’ve heard countless similar stories of other patients’ battles with their insurance companies, often times over treatments that the patients themselves were scared to death of receiving. Many patients simply give up, something I’m sure the insurance companies count on. They probably have charts and tables accurately predicting just how much corporate cat herding the typical patient will put up with before crying “uncle”. These patients are sick people, dammit, trying to feel better or make their lives easier. Instead of being treated as such, too often it seems the patient is treated as an adversary. Meanwhile, through all of the pleading, arguing, and appeals, the disease continues its relentless march, only heightening a patient’s sense of desperation. I believe this kind of treatment of chronically ill patients falls into the category of cruel and unusual punishment.

It’s not only the insurance companies that complicate the world of chronically ill patients. Insensitive doctors and incompetent office staff too often are the source of consternation, and just about every patient I know tells tales of the frustrations and sometimes sheer anguish visited upon them by folks whose job it ostensibly is to help them. One of the most common complaints are unreturned phone calls, usually placed when a patient experiences a disturbing new symptom or has a serious question about their condition. Let’s face it, not too many people call their doctor to engage in idle chitchat. Yet, getting some doctors and members of their staff to promptly return calls, or even just return them at all, is far too often an exercise in futility. Thankfully, my own primary neurologist’s clinic is an exception to the rule. The office runs a “nurse’s helpline”, on which I can leave a message that is invariably responded to that very same day by an intelligent and empathetic healthcare professional. Unfortunately, I can’t say the same of the constellation of other physicians with whom my condition has forced me to get acquainted, many of whose offices are Bermuda Triangles for phone messages left with office staff.

This lack of response puts patients in the uncomfortable position of either making repeated phone calls and risk being placed in the “pain in the ass” file, or just letting their issues go and leaving them unresolved. Worse still are instances when, out of sheer frustration, patients must take the lead in micromanaging their own care, in effect doing the job of office staffers for them. In the last six months I’ve found myself having to call hospital radiology departments to get the info needed to schedule tests ordered by one specialist or another, and have even had to call medical records departments in order to get test results sent to the ordering physicians, all tasks that should have been handled by the physician’s office staff. If I had waited for the staffers to handle things themselves, though, I fear I would still be waiting. I understand that such staffers are under constant barrage by needy patients, each of whom thinks their problem should take precedence over all others. The stress of dealing with seriously ill people day in and day out must certainly take its toll, but that’s no excuse for people simply not doing their jobs.

At the top of the frustration food chain are physicians themselves.Most are indeed outstanding individuals who take the time to get to know their patients and show a true interest in them as complex emotional beings, and not just broken bodies on which to ply their trade. Others, though, while clinically proficient, are seriously deficient when it comes to compassion and the art of listening. Neurologist horror stories litter Internet MS forums and chat rooms, tales of doctors who seem to place their own interests over those of the patients they treat, brushing off patient concerns with condescension and disregard, often acting as if they are doing the patient a favor by examining and treating them. This can leave patients more befuddled after their appointments than before, a situation that simply should not be. Yes, doctors are only human, and perhaps some patients expect too much of them, but at the end of the day it is the patient who is left alone to navigate the frightening world of chronic illness, a fact that should be at the forefront of every physician’s mind and personal code of conduct.

Yes, being sick can be very hard work. My MS friends tell story after story of almost unbelievable travails within the labyrinth that is modern medicine. Although different countries have different medical systems, it seems every patient, no matter where they live, has their own tale of battling the medical powers that be. Not every physician’s office is dysfunctional, not every doctor is an egotistical ass, and not every medical staff member is incompetent, but there are just enough that are to make being sick sickening. When I “retired” from my career six years ago I had no idea that a new occupation awaited me. Far too often, being sick is a full-time job.

Bits and Pieces: Batten Down The Hatches Edition

First, thanks to everybody who inquired about my well-being after Superstorm Sandy hit the New York-New Jersey area. Luckily, I live in the uptown section of Manhattan, which was relatively unaffected by the storm. The folks downtown had it harder, as much of that area flooded and there were extended power outages and lots of property damage from the overflowing waters. As I’m sure most of you have seen on the TV news, some other areas had it much worse. Parts of Queens and Staten Island look like war zones, as does much of the New Jersey shore. The damage done to these areas was in some cases absolutely catastrophic, and those who live in them face months or years of rebuilding and trying to regain some sense of normalcy. My heart and thoughts go out to them.

The worst my area saw was some downed trees, which by comparison is barely worth mentioning. Subway service was disrupted throughout the five boroughs of New York City, as, for the first time in history, the New York City subway system was extensively flooded. City officials are still not sure when subway service will get back to normal. Although this has created hardships for millions of New Yorkers, Karen and I were not affected. Due to my disabilities, I haven’t been on the subways in years, as they have some serious accessibility issues. Karen is lucky enough to be able to walk to work; her rigorous commute is a walk through Central Park.

All in all, we got lucky. We live on the 18^th floor of our building, and if we lost power for a significant amount of time, I’m not quite sure how I would get out of the building. I guess the police or firemen would have to carry me down the 18 flights, an exercise I’m sure none of us would enjoy. Particularly since I’m quite positive I wouldn’t be able to refrain from reeling off a string of pathetic attempts of humor, which might tempt my heroic first responders to “accidentally” drop me down some stairs. Note to self: in the event of an emergency, refrain from making wisecracks until you are on terra firma, lest you wind up being dropped on your head.

So, that’s the scoop on Superstorm Sandy from my perspective. Kind of scary that Sandy is called Superstorm Sandy, but I guess the combination of a hurricane and a nor’easter deserves a new moniker. We are experiencing another nor’easter as I write this, which will only exacerbate problems for all those folks seriously affected by Sandy. I blame it all on Ernest Borgnine, pretty much because I neurotically feel the need to have somebody to blame for everything. BTW, I’m quite certain my disease was caused by Ethel Merman.

Okay, enough with the preliminaries, here’s my monthly (or so) collection of MS related news items and informational tidbits. If you don’t like them, or find them boring, blame it on Zsa Zsa Gabor.

♦ CCSVI is always a hot topic, and although interest in the issue seems to have lost a little bit of its initial ferocious intensity, there were some interesting and newsworthy CCSVI developments over the last several weeks. After much outcry by the patient population of Canada, the Canadian government has finally given the go-ahead to a national CCSVI clinical trial (click here). While this is a positive development, like the entire CCSVI theory itself, these trials are not without their controversies, ranging from the size and scope of the trial to the makeup of the principals who will be conducting it, as is made clear in this article by Anne Kingston, a Canadian journalist who has been doing terrific reporting on all things CCSVI for several years now (click here).

Doctor Robert Zivadinov, who heads up the BNAC (Buffalo Neuroimaging Analysis Center) CCSVI research project, recently testified before the Canadian Senate on his research findings and their potential impact on not only MS but other neurologic diseases as well. The video of his testimony is must watch material for anybody interested in the current state of CCSVI research. Though the testimony runs almost 45 minutes, it’s time well spent and viewing it is highly recommended:




Zivadinov at the Senate meeting by dm_509535f98f233
Here in the states, CCSVI has finally hit the national media, in an article published in the widely read New York Times Sunday Magazine section (click here). It’s incredible that this far into the game CCSVI has been barely mentioned in the US news media, but this article is at least a good start. It very likely won’t make either ardent proponents or opponents of CCSVI particularly happy, which probably means it’s a pretty fair accounting of the topic. One can only hope that this article will spark some interest in the issue in the wider American newsgathering community, since the CCSVI saga has all the hallmarks of a juicy medical news item, namely a huge amount of patient advocacy, infighting between practitioners of different medical specialties, and a desperate patient population dealing with a potentially gruesome disease. The fact that the story has received almost no coverage at all in the US is truly mystifying.

♦ There have been several interesting developments on the MS drug front. The latest clinical trials show that the drug Lemtrada (formally known as Campath) is significantly more effective in stopping disease activity than the currently available treatments (click here). Lemtrada is a very powerful drug, initially developed to treat leukemia and lymphoma. A powerful immunosuppressant, Lemtrada basically takes down a patient’s entire immune system, forcing the body to “reboot” and rebuild a new one, an action that appears to have extremely beneficial effects on MS disease activity, in some cases even reversing a patient’s level of disability. The drug is given intravenously, every day for five days, and then, approximately one year later, another three doses over three days. Trials have found that the drug appears to remain effective as long as five years after being administered.

All of this sounds great on first blush, but Lemtrada can have some very serious side effects. About one in five patients taking the drug develop autoimmune thyroid disease, and a smaller but significant number can develop a potentially life-threatening (but treatable) blood disorder. As with all available MS therapies, the drug does not appear to be effective on patients suffering from progressive disease.

Lemtrada has also recently been at the eye of yet another example of outrageous behavior by pharmaceutical companies (click here). When it appeared that the drug was about to be approved by the FDA, the makers of the drug, Genzyme and Sanofi, started pulling Campath off the shelves to facilitate a huge increase in the price of the stuff, up to the levels being charged for other MS “blockbuster” treatments. Yes, the drug companies are going to dramatically hike the price of a drug that has been widely available for the treatment of cancer since 2001 simply because it’s approaching approval for use in a disease whose treatments are noted for their obscenely high prices. Some might call this sound business practice, but to me it sounds like simple old-fashioned price gouging. Shame on them.

The experimental oral MS drug BG 12 has also been shown to be quite effective in late stage trials, and was submitted to the FDA for approval (click here). Since the trials had shown the drug to have a very good safety profile, it was a surprise when the FDA extended its review process on BG 12 (click here). I was wondering what might have prompted that action when I came across this article (click here), which tells of a drug called Reata, which was being tested for use against kidney disease and shares the same molecular target as BG 12. Reata had its clinical trials abruptly halted because of serious side effects and even mortality among test subjects. Although the two drugs do share a common molecular target, they work in very different ways, so BG 12 quite likely won’t suffer the same fate as Reata, but better safe than sorry. Although the reason for the FDA’s extension in reviewing BG 12 has not been made public, I can only imagine that the problems with Reata might be the cause.

♦ Healthline.com has put together a list of 18 of the best MS blogs, and lo and behold, Wheelchair Kamikaze was chosen as part of the group. A big thanks to Healthline, and congratulations to the other blogs chosen (click here). Be sure to check out some of the other blogs on the list, they are all quite excellent, and each has a unique take on life with the disease. Healthline.com has also put together a collection of the best iPhone and android MS apps, so get ready to do some downloading (click here).

♦ This paradigm shifting, earthshaking study, entitled "Social and Economic Burdens of Walking and Mobility Problems in Multiple Sclerosis", reveals that walking and mobility problems cause significant problems for MS patients (click here)!!! Contrary to what severely delusional and/or heavily sedated people might think, patients with more severe walking and mobility problems (or WMPs, as the researchers like to call them) require more caregiver support, visit a greater variety of doctors, and require more non-disease modifying drugs than patients who have less problems walking. Can you fracking believe it? The researchers also found that work productivity was impacted by the severity of a patient’s walking and mobility problems. Wow! Freaking gimps, letting a little problem like not being able to walk get in the way of their ability to work! Upon further study, the researchers even found a more subtle link: levels of work productivity decreased when levels of walking and mobility problems increased. Again, who would’ve thunk it? As somebody becomes more crippled, their ability to work also becomes more crippled? Like, you mean, there’s a direct relationship? Holy Rollators!

Let me save future researchers some time, and provide these insights gleaned from my own life experiences: the ability of people with progressive retinal diseases to negotiate obstacle courses decreases dramatically when they go completely blind, patients with flatulence problems can really stink up the joint after eating several bowls of baked beans, and patients who die of cancer require a tremendous amount of medical attention until they expire, at which point they mysteriously stop being a drain on medical resources. Astounding conclusions, I know, but I take much pride in my keen analytical mind and powers of perception.

♦ Regular readers of this blog know that I have a thing for pointing out the deficiencies of our medical research process, and that many of my gripes are based on the fact that the vast majority of medical research is conducted by for-profit pharmaceutical companies, whose reason for existence is not to produce the best drugs possible, but the most profitable. Yes, sometimes these two endpoints come together to the benefit of all, but they can often be at odds, to the detriment of patients. The following video, part of the incredibly wonderful TEDtalk series, brings to light one particularly egregious aspect of how medical research is currently conducted. It’s quite common, it seems, for pharmaceutical companies to simply withhold inconclusive or negative drug studies, while publishing positive studies on the very same drug. This, of course, can lead to disasters in which drugs get approved but then are found, after hitting the general market, to have horrendous side effects. There are numerous instances of this occurring, and this video provides some of the reasons why: