Tuesday, July 30, 2013

Bits and Pieces: Tecfidera Poll, Pharmaceutical Shenanigans, and More…

Support medical research: Your life depends on it!

Support medical research: Your life depends on it! (Photo credit: afagen)
(For those who receive these posts via email, the following contains several interactive features and videos that can only be accessed on the Wheelchair Kamikaze website. Please click here to open Wheelchair Kamikaze in your browser.)

It’s time once again for another edition of “Bits and Pieces”, a regular feature of this blog in which I present mostly MS related items that have found their way into my knapsack as I rummage around the Internet. But first, I’m going to try something brand spanking new. Drumroll please…

Okay, brace yourselves for the first ever Wheelchair Kamikaze interactive poll, where readers can register their responses to a few questions, and we can all view the results as they roll in. Creating this rather simple poll was much easier said than done, as the blog platform that I’m using doesn’t provide a handy a way to embed polls in blog posts, but with the help of the Google gods I figured it out (I hope).

The poll attempts to investigate the experiences of Tecfidera users, so, naturally, active participation in the poll is limited to those who have used or are currently using the new MS pill. I expect the results should be interesting for everybody with MS. A few months ago I put up a couple of blog posts summarizing some of the research I did on Tecfidera (click here and here), and the posts have received an incredible number of hits (over 30,000 and over 13,000, respectively), so I figure interest in the subject is high. I’m as curious as anybody to get a snapshot view of the Tecfidera patient experience.

Of course, the results of following poll will be completely unscientific, and are subject to the general whims and vagaries of the inter-webs. So, whatever the results, please take them for what they are, an amateurish attempt at patient pulse taking, hopefully interesting but far from definitive.

So, without any further fanfare, here’s the first ever Wheelchair Kamikaze reader poll. In the interest of trying to maintain some semblance of accuracy, please only answer the poll questions if you have actually taken Tecfidera, and if you are a Tecfidera user, please answer each question only once. No stuffing the ballot box, so to speak. Hopefully, the Google gods will not have steered me wrong, and this will actually work:

How would you characterize the side effects you’ve experienced as a result of taking Tecfidera?

Have Tecfidera’s side effects forced you to stop taking the drug?

(This question should only be answered by those who answered "no" to the previous question) How would you characterize any benefits you’ve felt since starting Tecfidera therapy?

All right, hopefully the poll did not cause this blog post to go kablooey, and we can continue on with our regular “Bits and Pieces” business. Here’s a collection of various MS related items that have caught my attention over the past month or so:

♦ There’s been a lot of news recently about the sometimes nefarious shenanigans engaged in by pharmaceutical companies. As long-time readers of this blog must be aware, I’m apt to go off on anti-Big Pharma tirades, but I promise I’ll try to control myself.

First up, an article from the New York Times about efforts currently underway to force pharmaceutical companies to release all of the research results related to the drugs they bring to market (click here). Hard as it is to believe, it’s an all too common practice in the medical research world for unfavorable data gleaned during drug trials to be suppressed and only positive info brought to light. Studies have shown that only about half of clinical trial results make their way to publication, and the vast majority of those results are positive. This phenomenon is known as “publication bias”, and is increasingly being recognized as a major flaw in our medical research model. In effect, it forces doctors to prescribe drugs without having full knowledge of the effects of those drugs, because unfavorable data is shielded from public view. The problem has become so widespread and troubling that the European Medicines Agency, which oversees drug approvals in the European Union, is considering a proposal that would force pharmaceutical companies to release all research results, positive and negative, related to drugs being submitted for approval.

While some drug companies are making a public show of voluntarily opening up all of their research results, it seems that others are not being quite so agreeable. As this article from the British newspaper The Guardian details (click here), a leaked memo reveals that powerful European and American pharmaceutical lobbying entities are attempting to mobilize patient advocacy groups (many of whom are reliant on pharmaceutical company funding) to raise fears that full disclosure of research results might be misinterpreted and lead to waves of health scares. Yes, the drug companies are trying to get patients groups to argue that withholding negative research data is actually in the public’s best interest. Here in New York City, we’d say that such efforts by Big Pharma take a humongous set of balls.

The roots of problems such as publication bias lie in the fact that we’ve evolved a medical research system that is increasingly dominated by the pharmaceutical companies. As this article from the Australian newspaper The Age nicely summarizes (click here), a joint review by American, European, and Australian researchers describes “how the enormous profit involved in making and selling drugs gave the industry power to influence every stage of the health system.”

Many decades ago, medical research was primarily the province of government and academic laboratories. Over the last 25 or so years, though, as the profit potential of pharmaceuticals has skyrocketed, more and more of our medical and drug research is being funded by the pharmaceutical companies themselves. Can anybody say “conflict of interest”? As an Australian doctor quoted in the above linked article states, ''Asking corporate sponsors to conduct pivotal trials on their own products is like asking a painter to judge their own painting to receive an award.'' Keep in mind, were not just talking any products here. Having painters judge their own work wouldn’t have the potential to cause physical harm to those who view their paintings, but allowing pharmaceutical companies to conduct research on their own products has already proven, on numerous occasions, to have potentially dire consequences on the patients taking their drugs.

Unfortunately, this situation is only likely to get worse, as economic and political constraints are leading governments to cut back on the already insufficient funding being devoted to medical research, as is detailed in this article (click here) about cutbacks to funding of the National Institutes of Health, the main government medical research facility in the United States. The NIH has long been at the forefront of innovating ground-breaking medical techniques and technology, but cutbacks to funding are effectively leaving the organization hamstrung, and are ceding more and more influence to Big Pharma.

Let me state that I don’t believe that the pharmaceutical companies are evil entities intent on doing harm to an unsuspecting public. They are only doing what corporations are designed to do, make as much money as possible. Most of the drugs they produce, including the MS disease modifying drugs, have increased the quality of life of millions of patients suffering from dread diseases. As public companies, however, the pharmaceutical giants are mandated by law to be beholden to their shareholders, not to the patients taking their products. While this has led to the production of many hugely profitable blockbuster drugs, it hasn’t led to all that many cures, as curing a disease pretty much eliminates any potential profit to be made from treating it, effectively violating a public corporation’s legal mandate. As I’ve said many times before on these pages, capitalism is a wonderful tool for creating wealth, but when married to medicine the results can be nauseating. Thankfully, there’s a pill for that.

♦ Okay, I’ll step back from the ledge, and refrain from engaging in a full throated rant. Let’s turn our attentions to more positive fare. Here’s a cool little interactive graphic, courtesy Healthline.com, which helps explain some of the common phrases thrown about in the MS patient lexicon. Just click on the graphic to to open it on the Healthline site, where you can mouse over the words to see definitions pop up. It's really kind of cool…

MS Hug

♦ Here’s a video, presented by Everyday Health and Dr. Sanjay Gupta, about a weighted vest that helps MS patients suffering from lack of balance. Kind of an interesting concept with the potential to help many people, and the physical therapist featured in the video is none other than Dr. Stephen Kanter, who is the PT at the MS clinic at which I am a patient. As a matter of fact, I was just in the room that Dr. Kanter is being interviewed in last week. Can my life possibly get any more exciting?

♦ Oh goody, here’s another piece for my ongoing collection of asinine research studies. It’s a brilliant example of scientific exploration that delves into the mystifying question as to whether or not being told they are JC positive makes patients on Tysabri more anxious (click here). For those who aren’t aware, the JC virus is responsible for PML, the potentially deadly brain infection that has been linked to the MS drug Tysabri. Patients who are JC virus negative have a negligible chance of developing PML. JC positive patients, though, have a far greater risk, in some cases less than 1 in 100. Can you guess what the researchers found? Brace yourself for the shocking conclusion, because the investigators discovered that Tysabri patients who are JC positive are significantly more anxious about taking the drug then their JC negative counterparts! Who could have possibly guessed that patients that are far more likely to get a horrible and potentially deadly brain infection due to the medication they are taking would exhibit more anxiety about that medication than those whose risk is barely registrable?

Reading about this research led me to do a little thought experiment of my own. Given my fertile imagination, I assure you that going through with the actual experiment is entirely unnecessary. After much intense thought and contemplation, I’ve concluded that attaching a small guillotine to my gonads would make me significantly more anxious than not having to cope with the perpetual fear of having my family jewels chopped off any second. Of course, just to be sure, I’d like to run this experiment in real life on several hundred men, mostly pharmaceutical and insurance company executives. Where do I go to get my research grant?

♦ This last video has nothing at all to do with pharmaceutical companies, MS, or medicine whatsoever. It does feature a dog, an omelette and Bossa Nova, though, three of my very favorite things. I hope you get as big a kick out of it as I did…

Well, that’s it for this edition of Bits and Pieces. Thanks for reading Wheelchair Kamikaze!…

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Tuesday, July 16, 2013

An Ugly Profile

Scary, Hideous, Negative Me!

As every man, woman and child over the age of six living in the United States must be all too aware, the latest courtroom drama to grip the nation has been the trial of George Zimmerman, which came to its conclusion this past weekend. Unlike many of our previous “trials of the century”, which usually feature lurid sexual misconduct, child murder, or the involvement of a celebrity, the Zimmerman trial focused attention on some of the most troubling fissures that threaten to fracture American society, including racial bias, the prevalence of handguns, and our well-earned paranoia regarding violent crime.

A prominent issue in the Zimmerman case was profiling, specifically racial profiling. But profiling can take many forms, and as a disabled person this aspect really struck home. More on this a bit later, but for the sake of international readers who may not know the specifics of the case, please allow me to provide a quick summary.

In February 2012, black teenager Trayvon Martin was walking back to his father’s fiancĂ©’s townhouse at about 7 PM in the evening, after a trip to a nearby convenience store. The Florida community he was walking through had recently been the scene of several burglaries and home invasions. A white resident of the community, George Zimmerman, a volunteer in the neighborhood’s community watch program, saw Martin walking in the dark through a light drizzle. Mr. Zimmerman, who spotted Martin from his car, thought the recently turned 17-year-old looked suspicious and called local police dispatchers, who told him police were on their way and advised him not to follow Martin on foot, advice which Mr. Zimmerman, who was armed with a concealed handgun, ignored.

After following Martin for several minutes, an altercation broke out between the two subjects, during which Mr. Zimmerman suffered a broken nose and abrasions on the back of his head. According to most accounts of the struggle, including Mr. Zimmerman’s, Martin wound up straddling Zimmerman on the ground and was getting the better of the fight. Zimmerman said that at this point Martin saw the gun holstered on Zimmerman’s hip, and told Zimmerman that he was going to kill him. Zimmerman then unholstered his weapon and shot Martin at point-blank range through the heart. Trayvon Martin died within minutes.

Initially, local police declined to arrest George Zimmerman, saying that his actions were justified on the grounds of self-defense. After the case reached public attention and generated a national outcry, Zimmerman was arrested and charged with second-degree murder. After a trial that lasted approximately 3 weeks, he was found not guilty, a verdict that has ignited heated debate and public protests throughout the nation.

Naturally, I have strong opinions about the Zimmerman case, but as I’ve largely tried to keep politics out of this blog, I’ll refrain from airing my opinions here. Instead, as I mentioned previously, I’d like to use this tragic incident as a catalyst to discuss the issue of profiling, the practice of making assumptions about a person’s character, intelligence, or intentions based solely on their appearance. Perhaps the only thing that seems certain about this case is that Zimmerman profiled Martin, assuming he was “up to no good” based solely on the youth’s appearance. Tragically, it turned out those assumptions were wrong, and ultimately resulted in the death of a 17-year-old who was simply in the wrong place at the wrong time. Or, more correctly, in the right place at the wrong time.

Why discuss this on a blog devoted to issues associated with multiple sclerosis and disability? People with MS and other disabling illnesses who show the physical effects of their disease often find themselves the subjects of profiling, whether they walk unsteadily, use canes or walkers, or are reliant on wheelchairs. Assumptions are often made by members of the general public based solely on the appearance of the afflicted, and those assumptions can often multiply the pain and suffering caused by the disease itself.

There has long been stigma attached to physical disability; the severity of this stigma varies from culture to culture but certainly persists to this day even in more enlightened societies. I know many MSers with relatively mild disease who struggle mightily to keep their illness a secret in the workplace, for fear that knowledge of their ailment might derail their careers or even get them fired. Patients with more apparent manifestations of the MS, such as balance and gait issues, have found themselves accused of alcoholism or illicit drug use. Those of us who find ourselves in wheelchairs often also find ourselves ignored by the population at large, subject to ignorant or condescending comments, and sometimes even treated as complete imbeciles. Folks whose disease affects their speech are often automatically assumed to be suffering from mental retardation, the notion that a perfectly fine mind may be hidden behind their inability to enunciate never even occurring to many in the healthy population.

How can I be so sure of all of this? The answer is simple, and embarrassing. Back in my healthy days I was sometimes guilty of just such profiling, unconsciously making assumptions about the disabled based on preconceived notions that had no basis in reality. I clearly remember seething at the wheelchair reliant person who had the audacity to hold up my commute to work while the driver of the public bus I was on took the time to operate the vehicle’s wheelchair lift. How dare they travel during rush hour, didn’t they know that normal people need to get to work! Looking back, I cringe at the memory of my sometimes dumbing down my speech in the presence of people with physical disabilities, as if somebody possessed with faulty limbs was also automatically possessed with a deficient brain. Turns out the one with the deficient brain was me.

Even now, when I’m all too well versed in the trials and tribulations of the disabled, I sometimes find myself falling victim to my own subconscious preconceptions. A few years back I met a man who was active on one of the online MS forums in which I participate. In our written give-and-take on the Internet, I knew him to have a keen intellect – astute, sharp, and witty. When I finally met him in person at a large MS symposium I could barely disguise my shock when I found he could barely get a word out, his speech halting and slurred. Despite the fact that I knew that this man had a fine mind, I automatically found myself simplifying my vocabulary and talking in a louder voice, so strong and ingrained were my mistaken inclinations. I’m ashamed to admit that I was so disquieted by the situation that I cut our interaction short, behaving in a way I regret to this day.

George Zimmerman’s profiling of Trayvon Martin ultimately resulted in an innocent teenage boy’s death, an outcome that all can agree was tragic, whether or not they believe the jury’s verdict to be just. Though the profiling experienced by the sick and disabled isn’t likely to result in physical death, the injuries inflicted to sense of self and ego can at times seem more hurtful than a physical blow. The emotional maelstrom experienced by patients dealing with chronic disabling diseases is and of itself a difficult storm to weather, and the added indignities that are sometimes heaped upon them by an indifferent and ignorant public can multiply the emotional distress of such illnesses exponentially.

Unfortunately, there are no easy answers when it comes to eradicating the problem of profiling, whether that profiling is based on race, gender, religion, or physical condition. As my own experiences illustrate, perhaps the first action we should take to eliminate the poisonous practice of profiling is to look within. An open mind and an open heart are tremendous benefits not only to the person who possesses them, but to all within their sphere of influence as well.

Trayvon Martin, RIP.

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Monday, July 1, 2013

It's Not Easy Being Green

The Seven Vices - Envy, by Giotto (1306, Fresc...
The Seven Vices - Envy, by Giotto (1306, Fresco, 120 x 55 cm, Cappella degli Scrovegni (Arena Chapel), Padua, Italy) (Photo credit: Wikipedia)

Envy. I’m not proud of it, but I confess that I find myself consumed with this ugly emotion with increasing frequency, in direct proportion with the progression of my disease and my increasing physical disabilities. Of the seven deadly sins, envy is certainly amongst the most distasteful, right up there with anger, greed, and pride, all such unpleasant and unlovable traits. Lust, gluttony, and sloth, on the other hand, while certainly not foundations upon which to build a thriving long-term existence, can be an awful lot of fun in the right doses. I’ve always felt that the occasional pinch of decadence was a requisite ingredient in the recipe for a life worth living.

But I digress, back to envy, that entirely negative and frustrating beast. As much as I try not to succumb, as much as I try to maintain the emotional control which is so essential to sustaining psychological equilibrium in the face of progressively debilitating disease, envy often finds the cracks in my defenses and breaches my emotional levees, and when it does the sentiment inundates my being with its toxic sway. As I roll through the teeming city streets or the more gentle confines of Central Park with my backside firmly planted in a wheelchair, passing tens and hundreds and thousands of the healthy masses, I find it at times impossible to not yield to waves of envy, covetous of the most humble abilities on full display and taken entirely for granted by those around me, mundane everyday actions that nevertheless taunt me like a poke in the eye – simple miracles like to two working legs and two working hands, fingers breathlessly nimble, and senses tingling and undulled, all utilized with nary a thought or conscious desire. You don’t know what you’ve got till it’s gone, they say, and, oh, the envy that can be risen by the sight of those whose terrific good fortune allows them to maintain their blissful ignorance.

At times it feels as if my illness is turning me into a breed apart, and despite my attempts at denial, I suppose such a transformation is inevitable. One of these things is not like the others, and that one is me. Yes, of course I’m still human, a sentient, feeling being, and this binds me to the whole of humanity, but in physical terms I am inexorably drifting further and further from the main. Some parts of the world are now quite literally shut off to me, a simple 6 inch high step as impassable a hurdle as the ramparts of a medieval castle. Food that cannot be easily consumed with one hand holding a fork or spoon needn’t be edible if placed in front of me unless I am free to go caveman and pick up that chicken breast or ribeye and tear away at it with my teeth, actions that are generally frowned upon in most fine dining establishments. Clothing with buttons, zippers, or even snaps are as useful to me as a Jell-O hat, and don’t even get me started on shoelaces.

But it’s generally not my frustrations with the obstacles of the physical world that engender aching pangs of envy. Rather, it’s observing the modest joys achieved without thought by the blessed masses that provoke a cascade of jealousy: the leisurely stroll or the hurried stride, the gesticulations that say what words cannot, the effortless grace of a lovers embrace. On these my gaze falls longingly, as remembrances of my own healthy long-ago life, so divorced from the one I lead now, claw their way out of the carefully constructed lockboxes in my mind to disrupt the ordered reality I try so hard to consciously maintain.

I envy the young for their vibrantly radiant energy; even sitting still they shimmer and glow. All that beaming vigor, if only I could siphon off just a drop from each I’d be dancing in no time. I envy the old – even those who move with obvious effort – for their decades lived without suffering a life altering physical catastrophe and for their active old age, a stage of life I will likely never know. I sit amazed – and, I must admit, in weaker moments aghast – at how many octogenarians are in far better shape than I. Let them all live long and prosper, the young and the old alike, but their very existence sometimes seems designed solely to mock my own. There are days when being out in the world can be invigorating, when I can lose myself in the kaleidoscopic swirl of humanity, if even just for a few moments. There are other times, though, that the very thought of leaving my sanctum is simply too much to bear, when solitude is the only companion I can stomach.

In those down times, though, I try to remind myself that even in my current debilitated state there are those worse off than I, some sharing the disease that afflicts me, who might look to me with envy. And there are others, perhaps those racked with terminal disease or ruinous injury, who could very well be covetous of the plight of the poor souls who envy me. The ladder of despair is long, and those clinging desperately to each rung can't help but occasionally glance upwards and stare jealously at those just above them.

I vacillate between trying my damnedest to suppress the urge to direct my wheelchair full bore into the shin bones of the able bodied and wanting to roll up and beseech them to fully embrace the power and majesty of their unsullied health. “Do you know how lucky you are?”, I want to shout at them, especially those who look sad or sullen. “Did you lose your job, some money on the stock market, a lover or spouse? Are you worried about the state of the world or suffering from some existential angst? How wonderful! Now you can take a night to feel the hurt, and then wake up tomorrow and use that fully functioning body and disease-free brain to start anew, to find a better job or make more money or discover some wonderful new person or decide to do something constructive to improve your lot in the world and maybe even help your fellow man! With your health intact you hold the power to reinvent yourself the moment you muster the will to do so. Never forget that you’re only as stuck or lonely or despondent as you want or allow yourself to be, the past is nothing more than a quickly fading photograph, and whatever emotional baggage you’re carrying around can be released as soon as you decide to stop letting it drag you down. The only reality is that which you create, and the future offers nothing but boundless opportunities as long as you allow yourself to be open to them! Choose happiness, since you’ll never get a refund on the days you spend miserable, and as long as you’re healthy the world and all of its glories are there for the taking!”

Yes, I’d sound like some gimpified late-night TV self-help shyster, but every word is true. I suppose that’s what I find so truly galling about seeing all of these magically healthy people; they bring into shattering focus the fact that I wasted so much damn time on what ultimately turned out to be trivialities when I was one of them. Here comes a clichĂ©: if I only knew then what I know now, but how true, how goddamned true. If I could just go back for five minutes and give myself a good swift kick in the ass! I’d shout at the younger healthy me, “Stop stoking the embers of that broken heart, get off that couch, and call that sexy blonde who’s been flirting with you for the last year and a half! Don’t let fear dictate the day! Quit that soul sucking job you hate and put your talents to use chasing your dreams! Go learn how to scuba dive, or skydive, or do any of the million things you’ve always wanted to do but never got around to actually doing! Because time is finite, and there just may come a day in the future when you will no longer have the luxury of making such choices. Don’t want to scare the crap out of you, buddy, but let’s just say you’d better get cracking…”

As I write this, I realize that all of the above advice, all of my imaginary admonitions to the healthy and to the younger me, apply with a few modifications just as well to who I am now and my current circumstances. Yes, I have disease imposed restrictions, and they suck. But I still have the capacity to find joy, I can still pursue my pleasures – albeit from a more limited menu – and the world is still brimming with wonder. Though I am physically worse off than I was a year ago, I can still get out and about, can still take photographs, can still write essays that I hope resonate with folks in similar situations. It may take me longer to do these things, and I may be forced to curtail the scope of my activities, but I’d best do what I can do now for as long as I can do it because perhaps the only thing I know for sure is that progressive diseases progress, and I have a progressive disease. I suppose that makes my future more uncertain than most, but everybody is traveling down a path made up of nothing but blind curves.

I know my feelings of envy are shared by at least a few of my fellow MSers, as the topic has come up in quite a number of conversations I’ve had recently with some of my MS friends. As with all negative emotions, envy cannot be eradicated, for how can one in a wheelchair not be envious of those walking so effortlessly all around them? The key is to acknowledge the envy and then do your best to let it go, for its toxicity is only a fleeting poison unless you allow yourself to wallow and dwell, using envy’s sharp edge to administer distressing self-inflicted emotional wounds. The disease itself does enough damage all by itself, it certainly doesn’t need the help of negative emotions run amok.

So I guess I have some work to do. As I’ve noted before on these pages, one of the lessons imparted by MS is the value of kindness, and especially that of kindness to self. On days when the outside world seems too daunting a place to visit, it’s okay to relish the safety of your cocoon. But the outside world isn’t going anywhere, and those of us faced with the ravages of progressive debilitating illness know all too well how precious a commodity is time. Once each day is gone it’s not coming back, and despite the restrictions we face, the paralysis and pain and emotional distress, as long as nothing suddenly calamitous occurs only we can determine whether any particular day is good or bad, fruitful or wasted. There is still life to be lived, even if it’s not a life you could have ever envisioned. Fuck envy and fuck MS, each on their own is ugly, and the combination is wretched. Each new day belongs to nothing and no one but me, so who better to put into action the wisdom and perspective so harshly imparted by this dread disease?

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