Thursday, June 30, 2016

Deconstructing Marc (Repost)

(I'm still in "hiatus mode", but lest the world forget all about me I'm reposting an oldie but a goodie, a blast from the past, a "best of". Or is it really just a moldy oldie? Guess I'll have to leave that up to you folks to decide. This essay was originally written and posted in March, 2011, long enough ago that I'd forgotten writing it. Thinking back on those days, it's amazing how much more deconstructing the disease has inflicted, stripping away even more layers of the veneer that 4+ decades of life had applied. The words below still hold true, but I must admit that although I understood on an intellectual level how much damage progressive MS could do, I never really believed that I'd reach the level of disability at which I now find myself. But, here I am, five years later, still making waves. Good on me. I hope you find value in the following vintage collection of Wheelchair Kamikaze syllables.)


BUDDHA
Image via Wikipedia
Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.

The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis not only from physically able to physically disabled, but from who we were to who we are becoming.

Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.

After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, continued to drink their aperitifs and dance their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg grew worse, and my right arm became progressively weaker. The descent had begun.

Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.

This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.

A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, even though I wasn't entirely sure what that path might be.

I'd always had literary and creative aspirations, and the everyday grind of life working within corporate organizations, even ones dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, courtesy Multiple Sclerosis, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.

In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.

Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path. Was the disease a hammer blow delivered by a universe intent on getting me back on track? Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was, not so long ago.

It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…
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Sunday, June 12, 2016

Honored

Due to what I can only imagine must be a clerical error, Healthline.com has selected Wheelchair Kamikaze one of 2016’s 23 best MS blogs. Seriously, though, given the explosion in the number of Multiple Sclerosis themed blogs in recent years, being chosen as one of the best is truly an honor. A big thank you to Healthline for choosing Wheelchair Kamikaze to be part of their list.

I encourage all WK readers to check out the other 22 blogs on the list (click here), which range from highly personal pages written by MSers themselves to blogs maintained by some of the leading MS patient advocacy and research organizations. Certainly, all worth spending time perusing.

On another Healthline.com related note, one of the site’s more eclectic MS features is their slideshow of MS tattoos (click here). Healthline is looking for new submissions for inclusion in the slideshow, so if you've got some MS ink you'd like to show off, simply email a clear photo of your MS body art along with a brief description to nominations@Healthline.com with the subject line "My MS Tattoo".

I would send them a photo of my own MS tattoo, but it's in a very private place. Okay, I'll admit it – it's on my schmeckel and it usually just says "MS Sucks". When I'm excited, though, it says "MS Sucks As Much As Anything Can Possibly Suck And Someone Better Cure It Soon, Dammit! ".

BTW, “schmeckel” is a Yiddish word and if the definition isn’t clear enough (click here). For those of you for whom this is a new word, as an introduction to this vital addition to your vocabulary I encourage you to use “schmeckel” in conversation at least three times today. Please report your successes/failures in the comments section of this post.

Uh-oh, is all of this talk of schmeckels inappropriate? Sure hope this doesn’t disqualify me from the Best MS Blogs of 2017 list…

Healthline has also recently released an MS app called MS Buddy for iOS (click here) and android (click here). MS Buddy is quite unique in the MS app universe. It enables peer-to-peer interaction, allowing MS patients to connect with one another and chat via text message on a one-to-one basis.

After downloading the app, MSers fill out a profile detailing age, sex, type of MS, and MS medications, along with a “break the ice” question to be presented to your potential new MS Buddy (hint: probably best to leave any references to schmeckels out of your "break the ice" question). The app then uses an algorithm to match you with an appropriate buddy, and will send you a new MSer to chat with every day at noon. Dealing with MS can sometimes be a lonely experience and communicating with others who "get it" can be a tremendous relief, so download MS Buddy and give it a try…

Once again, a big thanks to Healthline.com for choosing Wheelchair Kamikaze one of this year’s best MS blogs, and an even bigger thank you to everybody who reads these pages…

Sunday, June 5, 2016

Remembering Bobby Kennedy

Attorney General Kennedy and Rev. Dr. Martin L...

Image via Wikipedia

(I rarely deviate from the MS/disability theme of this blog, but there are some things that are more important than multiple sclerosis. This essay was first posted five years ago, in 2011. Given the current ruinously cantankerous political climate in the United States of America, I believe the words and deeds of Robert Kennedy are more important than ever. With a few changes, perhaps a word or phrase here or there, the speech Kennedy delivers in the video at the end of this post is as relevant today as it was 48 years ago, and should be taken to heart by those of all stripes in this troubled nation of ours. Black or white, conservative or liberal, rich or poor, red state or blue state, Democrat or Republican, we're all in this thing together. For those who receive this via email, the video can be viewed on the Wheelchair Kamikaze website – click here)

I am a man with few heroes.

It disturbs me to see the word hero tossed around indiscriminately these days, as it belittles the few individuals who truly deserve the honor. Though I respect many people, some deeply, there are only a few whose words and deeds have led me to try – usually with pathetic results – to emulate the examples they set. One such person is Robert F Kennedy, who was felled by an assassin's bullets shortly after midnight on June 5, 1968, 48 years ago today.

Bobby Kennedy was by no means a perfect man, his shortcomings well-documented by numerous tell-all books and our insatiable gossip hungry media. Back then, there was still, for better or worse (I think for better), a separation between the public and private lives of our political figures. Show me almost any celebrated historical leader and I'll show you skeletons in their closet that today would have ended their careers before greatness could have ever been achieved. RFK was a complex individual; intelligent, introspective and headstrong, possessed of powerful ego and at times known to be ruthless in achieving his political goals. But he was also an idealist, a man whose thoughts and the actions driven by them evolved through a life transformed by devastating personal tragedy. After the assassination of his brother, President John F. Kennedy, Robert Kennedy went through a long dark night of the soul, only to emerge with a deep resolution to further devote himself to public service and fight for his deeply held moral convictions against social injustice and for the weak and disenfranchised.

Robert Kennedy started his political career working in the office of the now justifiably defamed Senator Joseph McCarthy, who at the time was in the midst of his vile early 1950s anti-Communist witchhunt, a hideous debacle which resulted in the destruction of the reputations and lives of dozens of innocent victims. From those ignominious beginnings sprang a career that saw Robert Kennedy champion civil rights, advocate for the poor and marginalized, fight organized crime, and play an instrumental role in pulling the world back from the very brink of nuclear Armageddon during the Cuban Missile Crisis.

After his belated entry into the 1968 presidential race, his campaign to win the Democratic nomination gained increasing momentum, culminating with his triumph in the California primary on June 4, 1968. Minutes after delivering his victory speech at the Ambassador Hotel in Los Angeles, he was shot while attempting to exit the building with his entourage. Though an assassin, Sirhan Sirhan, was named and convicted, controversy still rages over the tragic sequence of events that transpired that night. Robert Kennedy lingered for 26 hours, and died at 1:44 AM on June 6, 1968.

Had Kennedy won the nomination and eventually the presidency, our historical timeline would certainly have been significantly altered, perhaps resulting in a future absent much of the social and political upheaval that was to come. There would have been no violence on the streets of Chicago during the 1968 Democratic convention, no President Nixon, no Watergate scandal, a quicker end to the Vietnam War, and no massacre at Kent State. Without these traumas inflicted on the collective psyche of America one can only imagine that the arc of history might very well have been much more benign than the reality that ultimately came to pass. The promise represented by Robert Kennedy cannot be overstated, nor can the tragedy of his loss.

Perhaps the best way to illustrate the merits of Sen. Kennedy is to let the man speak for himself. On April 4, 1968, just two months before his own assassination, Dr. Martin Luther King Jr. was gunned down in Memphis, Tennessee. On the evening of the King tragedy, Bobby Kennedy was scheduled to address an inner-city crowd in the heart of Indianapolis, Indiana. Knowing that his audience would be largely black and likely unaware of Dr. King's assassination, which had occurred just a short time before, Kennedy had little time to formulate his thoughts much less write a polished speech. Without the help of aides or speechwriters, he jotted a few notes to himself during the ride to the rally, and then delivered an eloquent and profoundly emotional address. No teleprompters, no calculations of political consequences, no prepared text, just intelligent and respectful words delivered from the heart and soul. He didn't speak down to his audience but addressed them as peers, sharing with them the anguish of his too having suffered the murder of a loved one. As a direct result of this speech, Indianapolis was one of the few American cities spared vicious riots in the wake of Dr. King's assassination.

Here is the speech Robert Kennedy delivered that night, from the back of a flatbed truck…



Rest in peace, Bobby Kennedy.

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Monday, May 30, 2016

The Medical Industrial Complex: Sick People Required – Repost, with Updates

(As some may have noticed, it's been a while since my last blog post. This is in part due to some of my recent struggles with progressive MS and its attendant and ever-increasing obstacles, but also too because I think I'm suffering from a little bit of "blogger fatigue". I've been writing this blog since February 2009, or almost 7 1/2 years, an endeavor that has truly been a labor of love that has rewarded me in ways I never could've imagined when I first came up with the name "Wheelchair Kamikaze". Still, of late I have been finding my motivation levels a bit depleted, so rather than shortchange readers by putting out essays produced more out of obligation than dedication, perhaps it's best that I take a little break. I'm certainly not talking months, probably only a few weeks, but I think just a short vacation from being The Wheelchair Kamikaze will do Marc some good. I hope you understand.

In the meantime, here's an essay I first wrote back in April, 2010, with some recent updates. Though now over six years old, the topic it covers may be more pertinent today than it was when I first wrote it, as the corrosive and corruptive influence of big money on big medicine is more insidious now than ever. As I've stated many times on these pages, I firmly believe that capitalism is the greatest creator of wealth in the history of mankind; however, I also believe equally firmly that the marriage of capitalism and medicine is an unholy one.)


Living life with a chronic illness such as Multiple Sclerosis gives one an inside view of the medical establishment, a view that healthy people rarely glimpse. In the blissful ignorance of good health, modern medicine appears to be bright and shiny, a miracle machine complete with magical elixirs, futuristic technology, and a sophisticated understanding of the maladies that strike human beings. Headlines and television news anchors shout about the latest medical breakthroughs, and a stream of television commercials assure us that there are pharmaceutical remedies for everything from cancer to osteoporosis to erectile dysfunction. Once sick and thrust into the belly of the beast, though, this illusion starts to fall away, and a different reality emerges.

Although there have been some incredible advances made in our efforts to heal sick humans over the last 50 years, there are still vast swathes of patient populations whose illnesses remain poorly understood, insufficiently and ineffectively treated, and ultimately incurable. Problematically, many of these patient populations generate billions and billions of dollars for the modern medical hierarchy, a situation that sets up a paradox within our profit driven medical establishment. Cure these patients, and vast sums of money and an elaborate infrastructure would simply evaporate; keep them perpetually reliant on hyper expensive medicines and medical procedures, and reap the fruits of an unending money machine.

Before I am accused of being a conspiracy nut, let me state outright that I do not believe that there is a cabal of evil, mustache twisting, demonic connivers assembled around a huge flaming conference table, snacking on deep-fried baby’s arms while plotting to keep cures and remedies hidden and out of reach from the desperately ill. If this were the case, the solution would be fairly straightforward; simply "out" the conspirators, and the walls would come tumbling down. Rather, the problem has become incorporated into the system itself, insidious and inherent, the logical outcome of the evolution of a medical industrial establishment that has come to view sick people as consumers and horrendous illnesses as opportunities for tremendous financial gain. This system does not require people with malicious intent to keep it functioning; it only needs decent people doing their appointed jobs to the best of their abilities to keep the gears turning.

As previously stated, the past 40 or 50 years have seen some incredible medical advances, most of them in the fields of surgery and in the treatment of traumatic injuries and infectious illnesses. Organ transplants, less invasive surgical techniques, and an ever increasing understanding of human physiology have combined to put a shine on many facets of modern medicine. A patient's chances of surviving a heart attack, or avoiding having one in the first place, are much better now than in 1950. Knee injuries that in decades past would have necessitated complex and sometimes crippling surgery can now be done using arthroscopic techniques requiring only tiny incisions, with recovery times measured in a few short weeks rather than many grueling months.

The treatment of some of our most dreadful illnesses, though, have not seen such advances. Ask the average person about the chances of surviving cancer today vs. 1950, and I would expect that most would tell you that your odds of beating the disease are much better now than they were 60 years ago, a belief driven largely by the almost relentless marketing done on behalf of the medical profession. The New York Times, though, reports that "the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005." (Click here for article). Headlines blaring about the latest advance in cancer drugs rarely mention that the studies cited often declare a cancer drug "effective" even if it increases the lifespan of the patients taking it by only a handful of weeks. The fight against some forms of cancer has indeed benefited from modern medical advances, but for many cancers, little real headway has been made. (Update 5/30/2016: I'm happy to report that since I first wrote this essay, there have been some advances in the fight against certain cancers. Cutting edge biotech firms seem close to making some major breakthroughs in using the body's own immune cells to fight some very intractable cancers, and though most of these possible treatments are still in early to mid stage research, some do show tremendous promise. Fingers crossed, these efforts will at some point in the not-too-distant future lead to some dramatic advances in the fight against cancer. Having said that, we've still a long, long way to go in conquering these horrendous diseases.)

Since the vaccine for polio was found in the mid-1950s, very few if any diseases have actually been eradicated. Instead, the trend is towards turning diseases such as diabetes, AIDS, some cancers, and multiple sclerosis into treatable chronic illnesses, their patients heavily reliant on fantastically expensive medications and interventions. The reason for this lies largely in the fact that over 70% of our medical research is carried out by pharmaceutical companies, whose primary mandate is to generate financial profit. (Update 5/30/2016: within the last few years the chronic disease Hepatitis C has, in fact, largely been cured. Of course, the drugs that cure this disease is hideously expensive, and are among those that have led to the recent political uproar over drug pricing, which in my opinion is long overdue. Yes, the research and development of groundbreaking drugs is extremely expensive, and for each successful new drug there are multiple failures. But there is no reason that pharmaceutical companies be pressured to recoup their investments in just a few years, as is currently demanded by a rapacious Wall Street culture that demands year after year bottom line growth, no matter how immensely profitable a company may be.)

The job of a publicly traded pharmaceutical company CEO is to constantly drive up the price of his company's stock, not to facilitate the creation of drugs that would be of the most benefit to the patients taking them. This isn't a question of morality, but of economics. The drug companies, and those who manage them, are merely doing what every other business endeavors to do in our free-market capitalist system, to constantly increase profit. I'm all for free-market capitalism; in recorded history there has been no better economic driver and creator of wealth. Unfortunately, when applied to healthcare, in many cases good economics has led to very bad medicine. The corroding influence of big money, in addition to an environment of lax regulation, has led to some shocking abuses of the system, such as the marketing of drugs that are known to be dangerous (click here for info), and the suppression of studies whose results are unfavorable to the drug being tested (click here for info).

Over the past three decades, pharmaceutical companies have discovered that the best way to increase profit is to market "blockbuster" drugs that patients must stay on for the rest of their lives. In the case of multiple sclerosis, this has led almost all research to concentrate on compounds that alter or suppress the human immune system, based on the "autoimmune model" of the disease, which states that MS is the result of an immune system gone awry. In reality, it's becoming more and more clear that the aberrant immune response seen in MS patients is more a symptom than a cause of the disease. (Update 5/30/2016: Despite a growing body of evidence that points to this fact, until very recently almost all MS research has focused on new and more effective ways of suppressing parts of the immune system. Now that the drug market for relapsing remitting MS is – in the words of industry executives – saturated, researchers have begun to focus on progressive MS, whose disease process does not respond to most immunosuppressive agents. Therefore, the research community is finally beginning to rigorously investigate other potential mechanisms of disease progression, which may ultimately lead to more effective treatments for all flavors of Multiple Sclerosis)

Since the mission of pharmaceutical companies is to generate the most bang for their research bucks, they direct their research dollars to projects that have the best possibility of leading to substantial profit. This, in turn, influences the behavior of even the most well-meaning medical researchers, who, just like everybody else, need to feed their families and pay their bills, and who naturally seek to advance their careers. Thus, they are drawn to investigations that will most likely win hotly contested research dollars. That funding, the vast majority of which comes from the big pharmaceutical companies, goes almost exclusively into researching novel compounds that can be patented and remain the sole property of the company that discovers them for many profitable years.

This same dynamic inherently underfunds research seeking to eradicate diseases that have each, in effect, become multibillion dollar a year industries. This is not because of evil or malicious intent, but instead is the result of the economic engine that drives what can be called the "medical industrial complex", the misguided marriage between profit-seeking corporations and the healthcare industry, which requires a perpetual supply of sick people to keep the money flowing. This need for patients is so intense that it can sometimes lead previously untreated and relatively benign conditions to be deemed diseases that require pharmaceutical intervention, as in the case of osteopenia (click here for details).

This same drive also leaves many potentially effective but unprofitable remedies untested and relatively ignored. Drugs such as Low Dose Naltrexone (LDN) and the effects of diet and natural remedies have barely been studied for their impact on MS, simply because there is no profit to be made from them. Recently, a cheap blood pressure medication, Lisinopril, has been shown to have some promise as an MS drug. This discovery wasn't made by any run-of-the-mill research scientist, but by Dr. Jim Steinman, one of the inventors of Tysabri, a very expensive and controversial MS medication that is very effective but also carries with it the possibilities of very serious side effects. Dr. Steinman would like to see a full scale human study of the effects of Lisinopril, but says that "Lisinopril is as inexpensive as any prescription drug at this time, so pharmaceutical companies won't see any profits from financing a study" (click here for article). Thus, the drug remains unstudied in its effectiveness against MS, for now and probably forever.

It's hard to see a solution to this disheartening status quo, other than a significant increase in the government funding of medical research. If the $2.5 billion cost of a single nuclear submarine – the US currently has about 75 commissioned subs – were redirected towards foundational medical research, untold thousands might eventually be cured of currently untreatable or undertreated dread diseases. Unfortunately, the trends are heading in the opposite direction, with more and more funding coming from the private sector as public dollars become scarcer and scarcer in this age of soaring deficits and cries for smaller government. Though private research certainly has tremendous value, keep in mind always that the profit motive dictates against a search for cures. Undoubtedly, the outcry over the price of the recently approved Hepatitis C drugs – which prompted the pharmaceutical company that developed and manufactures it (Gilead Pharmaceuticals) to cut prices, sending stock prices plummeting – will give pharmaceutical companies pause when contemplating similar research goals for other diseases.

As a patient suffering from MS, the situation is incredibly frustrating, as it's clear to me that much of the research now being done on the disease is not conducted with patient benefit as its primary underlying goal, but rather with the profit potential and market share that each patient represents as the target. The medical industrial complex is a self-perpetuating entity that will not easily be shut down, the sheer force of its financial weight creating an almost irresistible momentum.

I'll let my final words on the subject be these: As a just and honorable society, please, view me first as a patient, not as a consumer. Human suffering should never be treated as a commodity, regardless of the considerable economic incentives to do so.

Tuesday, April 26, 2016

(Not) Born This Way

(To those who receive this via email, this essay contains a video which can be viewed on the Wheelchair Kamikaze website – click here)

Later in May I’ll be marking the 13th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and it’s still a shock, despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal inventions of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, except for the unfortunate developments of the last 13 years, nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly I just wanted my outward appearance to be a natural extension of the person wearing the clothes.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing a momentary narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments swallowed. That sly looking older gent, snap brimmed hat worn at a jaunty angle and eyes all a twinkle certainly had his adventures, quite likely a few too impolite to be told in public. Was he CIA or Mafia, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not long ago awkward teenage years and a mass of insecurities still harbored inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. My current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage, to my chagrin. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be you. Truth be told, back when I was among the healthy I was one of those who didn’t give much thought to folks in wheelchairs or scooters. Though I’m generally an empathetic guy, I don’t think I ever took the time to contemplate life through the eyes of the disabled, or imagine the path that brought them to their current state. It was much easier and less troubling to simply assume that they had just been born that way or had in some other fashion materialized in that wheelchair fully formed, like a pod person from The Invasion of the Body Snatchers. Dummy.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I lead before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world.

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life.

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in an online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state engendered by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel.

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid was true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly pirate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button, and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations.

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with one and all. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.


Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…


Thursday, March 31, 2016

Outrageous! Doctors Earn Luxury Goods by Answering Pharma Funded Surveys

(A quick note: Sorry about the extended time between blog posts, but I was dealing with some nagging respiratory yuckiness that left me with barely a voice, which makes writing blog posts using voice recognition software damn well near impossible. MS has made typing out of the question, thus the long hiatus. Well, now my voice is back, and so is the blog…)

Okay, here’s one for the “you can’t make this crap up” file.

A physician friend of mine – who shall remain nameless lest he/she incur the wrath of the Pharma beasties – forwarded me the following note they received via email, offering a generous rewards program in return for answering questionnaires designed to gather information that would help pharmaceutical companies maximize their ability to impact physicians' prescription writing inclinations, or, as the note less ominously puts it “to observe and improve the quality of the information you receive from the pharmaceutical industry”. The message came from a marketing/data mining company that uses sophisticated methodologies to maximize marketing, branding, and product launches in the health services industries. My physician friend tells me they receive several such emails every week.

Here’s the note, with any identifying or proprietary information redacted so that I don’t get sued for publishing it:


Dear Dr. XXXXX XXXXXXX

We would like to invite you to join our regular study on the medical information delivered by pharmaceutical companies. The objectives of this study are to observe and improve the quality of the contacts and information that you receive from the pharmaceutical industry through:

o individual interactions (in person and online)

o events (in person and online)

o direct mail (postal and email)

o clinical trials and product samples

As we work to help improve minor modifications to better align with your activity. These will allow life science researchers to measure your perception and satisfaction with the aim of adapting and improving the quality of information you continue to receive.

To thank you for your time and participation, we offer generous incentives which allow you to earn and accumulate points for each questionnaire you complete. The more questionnaires you fill-in, the more points you earn. We also offer loyalty program which rewards you 25% more points, if you participate for 12 consecutive months. At any time, you can use your points to redeem:

o   Flight tickets to destinations in the Caribbean, Europe, Central & South America, Asia, Australia and South Pacific, Africa and Middle East, Mexico, Canada and the US

o   International and domestic vacation packages including tours, sightseeing and cruises

o   Admission to theaters, concerts, sports events, amusement parks and many outdoor adventures

o   Merchandise including home appliances, furniture, home and garden products,  jewelry, toys, baby products, apparel, tools, office supplies, outdoor products

o   Health and Fitness products and equipment

o Electronics including TV, audio/video equipment, cameras and camcorders, computers, Apple iPads, iPhone, video games and consoles, GPS devices, printers/copiers

You can preview our incentive selections from our website at XXXXXXXXX.com using the trial login "XXX" and password "XXXXXXX"

To sign up, simply complete the form below with your preferred contact information. You can fax it back to me at XXX – XXX – XXXX or e-mail at XXXXXXXXX.com

Doctor name:                                                        First/last name:   
Specialty:  
Phone and  fax:
Mailing address:    
Email address:


If you have any question about the survey or the incentives, please call me at this toll-free number XXX – XXX – XXXX. I will be more than happy assist you.


PLEASE NOTE:  This e-mail and any attachments may be confidential or privileged and is solely for the intended addressee(s).  Do not share or use without XXX approval.  If received in error, please contact the sender and delete the email and any attachments.

 
Wouldn’t you like to earn international vacation packages and high-end luxury items just by answering surveys? Well, if you would, you’d better become a doctor. Because, you know, doctors need all of the financial assistance they can get since they are so underpaid in relation to those in other professions, like schoolteachers (who really make me want to retch, the hedonistic bastards).

I took the liberty of perusing the catalog of items available via the survey rewards program, and found that they include goodies ranging from free music downloads to high-end appliances and home furnishings to every kind of electronic gadget imaginable to European vacation packages. A single music download will cost a participating physician 278 points, front row tickets to a New York Rangers hockey game in Madison Square Garden (including food and nonalcoholic beverages) 337,489 points, and an unlocked 64 Gb Apple iPhone 6 plus 205,363 points. Oh, and a 15 night transatlantic cruise leaving from Rome and arriving in Miami, with stops in France and Spain along the way, will set some lucky questionnaire answering physician back 466,277 points (per person), which seems like a heckuva bargain given the cost of the hockey game.

Of course, it’s not the marketing company that is footing the bill for these “rewards”, but their pharmaceutical company clients. And why would pharmaceutical companies be willing to pay through the nose for information that would allow them to hone their messaging to doctors? Simply put, because the doctors know damn well where these rewards come from, and studies have documented that rewarding doctors with cash or goods has a quantifiable effect on their prescription writing practices. One such study (click here and here) found that “Even small handouts--such as free meals and payments worth $100 or less--tweaked branded scripts upward. Doctors who participated were two to three times more likely to prescribe brands than those who didn't. There was also a dose response: The bigger the value of payments and gifts, the more branded scripts… Doctors who received more than $5,000 in a year's time chalked up the highest percentages of branded scripts.” And make no mistake, pharmaceutical companies carefully track just how many prescriptions for their drugs doctors are writing, and routinely use such info to target those physicians who are “underperforming”.

It’s well known that pharmaceutical companies regularly pay the doctors who prescribe their products cash money, in the form of "consulting fees” and “honoraria”. More often than not, these consulting fees and honoraria are paid to doctors who simply talk to other doctors about a prescription drug, quite often over a free meal at a fine restaurant, or for giving a presentation on the drug at a symposium. Some doctors rack up tens of thousands of dollars per year in these fees, as has been made public via the Open Payments website, which was mandated by the US government in the Affordable Care Act.

While the Open Payments website itself is not all that user-friendly, the organization Pro Publica has built their own patient friendly portal to access the database, called “Dollars for Doctors” (click here). This website makes it extremely easy for patients to enter their doctors’ names and locations and come up with a list of all of the pharmaceutical company payments their doctors received from August 2013 to December 2014. Believe me, some of the numbers will shock you. One physician, a family medicine doctor in California, received nearly $44 million for “promotional speaking/other” during the 18 months in question. Yowza, for that money he must be quite the electrifying speaker, able to talk to the green off of an iguana. Using the site, I found that my first MS neurologist netted $72,580 during that time period, while my current neuro received a grand total of $17, which is one of the reasons he’s my current neuro.

It’s because this information is so accessible that pharmaceutical companies are finding new and more creative ways to funnel money and rewards to doctors, ways which bypass the laws and never see the light of day, such as handsomely rewarding doctors for answering questionnaires. Pharma has also increasingly taken to paying for physicians Continuing Medical Education (CME) courses, a practice that has seen a 25% jump since 2011 (the mandate that dictates public disclosure of physician payments went into effect in 2010).

All of this begs the question, how on earth is it tolerated, never mind legal, for pharmaceutical companies to pay the physicians who dispense their products? To my knowledge, this is the only industry in which such widespread and lucrative “consulting fees” and “honoraria” are considered everyday business. In most other lines of work such payments are called “bribes” and “kickbacks”. In the latter part of my career I worked for one of the major international music and entertainment conglomerates, and if we were caught paying a disc jockey to play one of our records (a practice known as “payola”) people would go to jail. Somehow, though, these practices are business as usual in the medical profession.

Pharmaceutical companies and the doctors who have their hands out frequently claim that these efforts ensure that physicians stay well-informed on the latest and greatest drug info, but are we really to believe that doctors would remain hopelessly ignorant if such palm greasing and wallet filling shenanigans were prohibited? What, would physicians suddenly forget how to read medical journals and the informational materials provided to them for free by the pharmaceutical companies? Has the Hippocratic oath been altered to state “First, do no harm. Second, information about pharmaceutical products not accompanied by copious amounts of dough shall be ignored”?

These issues are especially important to patients suffering from chronic diseases like Multiple Sclerosis who must rely on hideously expensive drugs, many of which carry with them a frightening list of potential side effects, to try to keep their disease at bay. We must trust that our physicians are choosing drugs and giving advice based on their keen medical insights and years of experience, and not because drug company monies have influenced their decision-making processes. The doctor-patient relationship for those suffering from chronic and potentially debilitating illnesses is a long-term affair, not a one night fling. As with all such relationships, trust is the beating heart of these partnerships, as life altering decisions hang in the balance. The fact that even the hint of financial self-interest on the part of the doctor might play a role in this complicated equation is, quite frankly, obscene.

I’ll now get off of my electronic soapbox, but I would encourage each and every one of you residing here in The States to quickly look up their doctors on the Dollars for Doctors website (click here), to see just how much financial benefit your physician has reaped through these dubious practices. This is not to say that every physician receiving large amounts of money from the pharmaceutical companies is corrupt, or has fallen under the spell of Big Pharma. But knowledge is power, and if your doctor has taken what appears to be more than their fair share, I’d say a frank conversation is warranted. No need to be confrontational, but certainly a cogent explanation would be welcome. Remember, for those of us suffering from long-term illnesses, the doctor-patient relationship must be a partnership, not a dictatorship. Ultimately, keeping yourself well-informed on all facets of the management of your disease may in fact be the very best medicine…

Hey, just for kicks, why don't those of you who do look up your doctors on the Dollars for Doctors website tell us how much pharmaceutical money your doctor received using the comments section of this post. Might allow us to contrast and compare… And vent and rant and rave…

Wednesday, March 2, 2016

Ocrelizumab PPMS Trial Data Released, Offers Reasons for Hope and Concern

Last month, at the annual ACTRIMS (American Committee for Treatment and Research in Multiple Sclerosis) conference, the full trial results for the Ocrelizumab PPMS drug trial were finally revealed. These results had been much anticipated by the MS community, as there are currently no proven effective treatments for Primary Progressive Multiple Sclerosis, and many previous PPMS drug trials have ended in failure.

Coincidentally, a few days before the conference, Ocrelizumab received “fast-track status” by the FDA (click here). The “Fast-Track” designation is given to drugs which promise to fill a prior unmet need, and generally shortens the approval process from 10 to 6 months. Since PPMS has no approved treatments, Ocrelizumab fits the requirements for the designation. Though fast-track designation means that Ocrelizumab will have an expedited approval process, it does not guarantee that the drug will ultimately be approved.

The anticipation over Ocrelizumab, which was developed by Roche Pharmaceuticals subsidiary Genentech, stems from the fact that trial results appear to demonstrate the drug to be effective in slowing down progression of disability in PPMS patients. In results presented at ACTRIMS, Ocrelizumab showed itself to be very potent in treating RRMS (click here), and in PPMS the drug slowed down disability progression by 24% (click here), making it the first major pharmaceutical product to demonstrate effectiveness in treating Primary Progressive Multiple Sclerosis in a scientifically rigorous placebo-controlled trial.

The data set presented at ACTRIMS confirmed info originally released last year, but the numbers revealed at the recent conference provided more details on the patient population included in the study (click here). Specifically, results were provided for two different subsets of patients – those with enhancing lesions (which signify acute immune activity within the central nervous system) and those without enhancing lesions. Only about 15% of patients with PPMS display enhancing lesions on their MRIs, and it was widely assumed that Ocrelizumab would likely only be effective in treating those patients. The results provided by Genentech at ACTRIMS , however, demonstrated that the drug appears to be just as effective in patients whose MRIs did not show any signs of enhancing lesions.

Great news, right? Well, if the numbers hold up it is great news, but there are certain aspects of the Ocrelizumab PPMS trials that raise some red flags. Ocrelizumab is a close cousin of the decades old drug Rituxan, which is also manufactured by Genentech. Both drugs work in almost the exact same fashion, by targeting and destroying immune system B cells, effectively ridding the body of the cells for periods of at least six or seven months. Ocrelizumab, like Rituxan, is administered approximately every six months, in two intravenous doses given one or two weeks apart.

Rituxan was originally intended for use against blood cancers, but was later found to be effective in treating a variety of autoimmune diseases, including Lupus, Rheumatoid Arthritis, and Relapsing Remitting Multiple Sclerosis. The human immune system consists of a wide variety of cells, but is primarily made up of B cells and T cells. Therefore, Ocrelizumab and Rituxan both eliminate a major component of the very complex immune system, which, it’s assumed, is why they are effective in treating so-called autoimmune diseases. Though Rituxan was never officially approved for use in MS, many MS neurologists prescribe the drug “off label” for their RRMS patients, in whom it has proven to be very effective in reducing relapses and the occurrence of MS lesions.

Back in 2008, trials of Rituxan on PPMS patients were deemed a failure, much to the intense disappointment of many patients, myself included. Subsequent analysis of the data generated by that failed trial, however, revealed that a subset of patients did seem to have a somewhat positive response to Rituxan – namely younger patients who displayed enhancing lesions, had been more recently diagnosed, and were less disabled than other trial participants (click here). Instead of pursuing more targeted trials with Rituxan, though, the drug’s manufacturer, Genentech, decided to develop a newer version of the compound, and thus Ocrelizumab was born.

Why invent a new version of an older, proven drug that uses the exact same mechanism of action as that older drug? Well, Genentech says it was done to develop a safer, more effective product, but a cynical person might point out that Rituxan had already proven itself to be relatively safe and quite effective but was due to come off patent in 2015, meaning that its window for generating tremendous profits was rapidly closing. By the time new trials were completed, Rituxan would no longer have patent protection. A new version of the drug, on the other hand, could be a golden egg laying goose. But, of course, only a very cynical person would point that out, not someone is bright eyed and bushy tailed as me.

Anyway, back to the current Ocrelizumab PPMS trials. Based on the lessons learned from the failed Rituxan trials, it looks like Genentech populated the Ocrelizumab PPMS trials with patients who were selected specifically because they were more likely to respond to treatment (click here). Whereas only about 15% of PPMS patients display enhancing lesions on their MRIs, the Ocrelizumab trial included about 27% of such patients. When compared to the trial’s placebo group, the patients that received the actual drug had twice as many enhancing lesions, meaning their disease was much more immunologically active. In addition, compared to other PPMS trials (all failed), patients in the Ocrelizumab trial were generally more recently diagnosed, and were much less likely to have been on any prior disease modifying medications (in the parlance of the medical research community, most of the patients were “treatment naïve”).

Still, when the numbers were broken down at ACTRIMS, they showed that the drug decreased the rate of disability progression by about 24% in both patients with enhancing lesions and without enhancing lesions. However, each subset of patients was too small to make these results statistically significant, meaning that the trial was, in the parlance of the medical research community, “underpowered”. Knowing that this was sure to be a very important issue, why would Genentech go ahead with a trial that was underpowered in this regard? Wouldn’t logic dictate that they design the trial to settle this vital issue in a statistically definitive manner? Seems kind of strange, no?

What may ultimately turn out to be the most troubling aspect of the Ocrelizumab PPMS trial, however, is that 11 cancers were detected in patients taking Ocrelizumab, versus only two in the placebo group. Eight of the cancers in the Ocrelizumab patients were breast cancers, versus zero in the placebo group. This is especially concerning because back in 2010, when Ocrelizumab was first developed, trials were started not only in MS but also on lupus and rheumatoid arthritis patients. Both the lupus and rheumatoid arthritis trials were halted because of patient deaths (due mostly to opportunistic infections), but the MS trials were allowed to continue because it was thought that MS patients would have a higher tolerance for risk (click here). Interestingly, in the Ocrelizumab RRMS trials, which actually included more patients than the PPMS trials, “only” four cancers were detected in the drug group, versus two in the placebo group.

Incidentally, in its over two decades of service, Rituxan has not been associated with the development of cancers or an alarming number of opportunistic infections, although rare instances of PML (the brain infection that is so concerning in patients taking Tysabri) have been seen in patients taking the drug.

If anything derails an FDA approval for Ocrelizumab in treating PPMS it may very well turn out to be the cancer issue. Even though the positive effect on PPMS generated by Ocrelizumab isn’t overwhelming (a 24% decrease in progression rates is nothing to sneeze at, but then again it’s hardly the dramatic effect PPMS patients are desperately seeking), on its own it would seem encouraging enough to garner an approval. However, given some of the questions regarding trial design and safety issues, it will be very interesting to see what the FDA decides. Another one time promising MS drug, Cladribine, was rejected by the FDA primarily because of cancers detected during drug trials (click here).

For some expert opinions on Ocrelizumab, here are two videos. The first is a video of Ottawa MS neurologist Dr. Mark Freedman discussing progressive MS in general, and then commenting specifically on the Ocrelizumab PPMS trial results. For those of you with short attention spans, he starts talking about Ocrelizumab at the 3:50 mark of the video. Dr. Freedman has some very interesting comments regarding the drug and its effectiveness, and B cell therapy in general. The video is well worth watching.





Here’s another MS neurologist, Dr. Clyde Markowitz, Director of the MS Center at the University of Pennsylvania, who seems much more enthusiastic about Ocrelizumab and its prospects for treating PPMS:





Being the always curious person that I am, and also hyperaware that drug companies often funnel money to doctors who prescribe their products, I did some quick checking and found that Dr. Markowitz received $64,461 from various pharmaceutical companies between August 2013 to December 2014, mostly for “consulting” and “honoraria” fees (click here). At least $6000 of this rather large sum came from Genentech, which, it turns out, was the number one drug company in handing out payments to doctors during that period (click here). And this was before the Ocrelizumab trials were completed.

One can only imagine that Genentech is now going all out to, um, “influence” key doctors in its efforts to get the drug approved, much like politicians target key precincts and states in their quest to get elected. I’ve done plenty of ranting on the subject of drug companies making direct payments to the doctors who prescribe their products in previous blog posts, so I’ll refrain from launching into yet another insane tirade here, but suffice it to say I’ve yet to find any logical argument as to why this practice is tolerated, much less legal.

In all fairness, since Dr. Freedman practices in Canada, I was not able to find any info on payments he might’ve taken from drug companies. The truth is that very few MS neurologists are not on the pharmaceutical company dole. I’d encourage you to enter your doctor’s name in the “Dollars for Docs” database (click here), and see if your neuro has his hand in the cookie jar. Again, this doesn’t mean that the doctors named in the database allow pharmaceutical company money to affect their decision making process, but then again, the pharmaceutical companies wouldn’t be doling out millions and millions of dollars if they weren’t getting an appreciable return on investment.

Okay, sorry, I got a little sidetracked there. I certainly hope that all of my concerns about Ocrelizumab turn out to be completely unfounded, as having even a modestly effective treatment readily available for PPMS would be a major step forward in fighting the disease. However, it seems clear (to me, at least) that going after the immune system isn’t going to be the magic bullet that solves the Progressive Multiple Sclerosis problem, or the broader overall Multiple Sclerosis riddle.. Researchers urgently need to step outside the box and start coming at the issue from new angles if any truly dramatic progress is ever going to be made. In the meantime, here’s to hoping that Ocrelizumab proves itself to be a safe and reliable option for Primary Progressive patients, whose desperation for proven treatment options is beyond words.

Wednesday, February 10, 2016

MULTIPLE SCLEROSIS SUCKS!

Allow me to apologize in advance for the contents of this essay. Quite simply, I’m fed up with Multiple Sclerosis and everything that has to do with Multiple Sclerosis. Those expecting to find any form of eloquence, wisdom, inspiration, or other redeeming qualities in these words will probably be sorely disappointed. Like a bulimic who just polished off a giant platter of lasagna, I’m feeling the need to purge and I have a hunch the results won’t be pretty. What follows promises to be more of a free-form rant than well-constructed discourse. I can’t guarantee any kind of narrative flow or grammatical cohesion, much less literary flourish or clever turn of phrase. No, instead I’m just gonna let it rip, an unadulterated regurgitation of everything about MS that’s been stuck in my craw these last few months. This may not be for the faint of heart, as I just might wander into some very uncomfortable territory. Okay, you’ve been warned; now’s the time to either buckle up or head for the exits.

MULTIPLE SCLEROSIS SUCKS!!! I hate this fracking disease. I hate what it’s doing to me, I hate what it’s doing to my MS friends, I hate what it’s doing to those who love or even barely put up with me. I hate the creeping paralysis, I hate the spasticity, I hate the pain, I hate the spasms, and I hate the unrelenting, soul crushing march of constant progression. I hate the slow, systematic dismantling of the life I used to know, I hate the steady erosion of everything I once thought of as “normal”, I hate the constant flow of indignities large and small handed out by the disease. I hate the word “multiple”, and I hate the word “sclerosis”.

I’m sick of being sick, and I’m sick of being sick of being sick. I’m tired of being tired, and I’m tired of being tired of being tired. I’m aghast at the fact that the balance between body parts that work and body parts that don’t work is starting to tip heavily in the favor of “don’t work”, like a sinking ship rearing up as it gets ready to make its fateful plunge. The list of things I can’t do are starting to outnumber the list of things I can do, despite the constant physical and mental adjustments and gyrations that I make trying to contort my life to fit within the ever constricting boundaries imposed by this hellacious disease. I find it impossible to ever get used to having this curse; at least three times a day I find myself shocked at my predicament, barely able to fathom that this is actually my life.

As of this writing I can barely dress myself, can’t cut my own food, can take but one or two hideously painful and treacherous steps. Horrifyingly, these steps are accompanied by a gruesome symphony of crunching and cracking sounds as my hip bones perpetually deteriorate, gut wrenching noises so loud that they can be heard across a large room, all courtesy a tortuously painful degenerative bone condition that has attacked my hips and shoulders that was brought on by IV steroids originally intended to help curb this monster. I'm only able to sleep in one and a half or two-hour spurts because of the intense pain in my hips and shoulders, and on most days I barely have the stamina to spend more than three or four hours at a time out of bed. My right arm is emaciated and most often bent at the elbow due to spasticity, my right leg as weak as a noodle. The left side that I've come so much to depend on is well on its way to failing, the thought of which bores a hole through my very being. And then there are the “bowel and bladder issues” that I share with so many other MSers. Such polite terminology for the fact that we can barely crap and can’t stop peeing. And despite this litany of dysfunction, I know that I’m still one of the lucky ones, as so many with this scourge are in far worse shape than I.

I’m fed up with well-meaning folks uttering some of the stupidest things I’ve ever heard in an attempt to make themselves and me feel better. Upon learning of just why it is that the right side of my body is a shriveled mess and my ass is stuck in a wheelchair, one woman cheerily informed me that her best friend’s husband is completely bedridden due to Progressive Multiple Sclerosis, but that he is just about the happiest person she knows. I just sat there smiling and nodding my head, while on the inside wishing that a rogue chimpanzee would suddenly materialize and eat her face. Her best friend’s bedridden husband is just about the happiest person she knows? A man is likely totally paralyzed, completely incontinent, and probably has to use a feeding tube for nourishment? And this poor soul is just about the happiest person she knows? Who are the rest of her friends, professional mourners? Remind me never to accept an invitation to a dinner party at her place.

I’m angry that the most insidious and destructive form of the disease, Progressive Multiple Sclerosis, the form I suffer from, is kept hidden from public view like a Victorian era mentally deficient child kept locked in an attic. Courtesy the mainstream media and the Multiple Sclerosis Societies, the public never sees the ravaged bodies and mangled lives of people hit hardest by the disease. Instead, the face of MS belongs to celebrities and those patients left mostly unscathed by the illness. There’s even a TV commercial for an MS drug, Tecfidera, that portrays the disease as quite literally something of a carnival. Funny how those celebrities with MS whose disease takes a turn for the worse fall from public view, isn’t it? Where are you, Terry Garr?

Progressive Multiple Sclerosis has made me envious and prone to jealousy, not only of healthy people but even of people with other illnesses. I’ll confess that this even includes people suffering from the relapsing remitting form of the disease, even though I know that RRMS can be its own particular form of hell and can eventually lead to Progressive MS. But just the idea of a remission, a break from the never ending grind of watching myself slowly disappear seems absolutely heavenly. At this point I think I’d give up all the remaining years of my life for just a week of normalcy. Hell, maybe even just an hour. Sixty minutes to go for a walk, to run and jump and dance and button my shirt and tie my shoe and hug my wife and – gasp – drive a car! Yeah, sign me up. That would be one heck of an hour.

Along those same lines, here’s an even more disturbing confession. In ruminating through mental lists of diseases that might be worse than Progressive MS (leprosy, for instance), I sometimes find myself thinking that cancer would be preferable to this creeping paralysis. I know, heresy. But as undeniably horrible as is cancer, at least it’s a disease that ultimately and in relatively short order comes to some sort of conclusion. Yes, I’m fully aware that the disease puts its victims through living hell, and that cancer treatments often seem worse than the disease itself, but at least there are treatments. And at the end of those treatments patients either beat the disease and become survivors who can then begin to reassemble the shards of their life, or they die. Progressive MS doesn’t have the good manners to finish off its victims, instead leaving its least fortunate sufferers consigned to live out their years as fully conscious brains trapped inside prisons of completely useless flesh and bone. The stuff of horror movies, a fate far worse than death as far as I’m concerned. Progressive MS has exorcised me of any fear of death. In fact, given the aforementioned almost unthinkable but quite possible outcome, on many days I’m far more afraid of living than dying.

I'm aware that to many the above words may seem shocking and wrongheaded, but there’s a reason that MS was second only to cancer among the ills suffered by the patients that the infamous Dr. Kevorkian helped end their lives. Okay, hell, now that I’ve stuck my toe into these murky waters I might as well dive all the way in and speak about what goes largely unspoken, at least to those outside of the Progressive MS club. Any number of studies suggest that suicide be listed among the consequences of Multiple Sclerosis, since so many late stage MSers decide to take matters into their own hands. In my many conversations with other people with Progressive MS, I’ve found that most have formulated some sort of escape plan, some in only vague terms but others down to the last detail.

Anybody who would condemn folks for having such thoughts need to keenly consider the gaping abyss people with advancing Progressive MS stare into on a daily basis as their thus far untreatable disease drags them ever forward towards the dark at the end of the tunnel. The relief expressed at finally being able to give voice to such taboo thoughts is just about universal among those I’ve communicated with, and is cathartic in its own right. Almost never shared with outsiders, most of the people who have related their thoughts and plans with me find them not self-defeating but rather self-empowering, bracing them to suck it up and fight on secure in the knowledge that if the fight becomes just too brutal and the climb to steep they’ve given themselves permission to call it a life. And in that there is no shame.

Let me assure all concerned that I’m not suicidal. I’m too damned angry to be suicidal. I’ve so far taken all of the wallops that this disease has meted out and found ways to fight back, and though I’m afraid I’ve not managed to land many blows on my disease itself, I take comfort in the knowledge that I may have in some tiny way helped a few of my fellow travelers on this torturous path to better navigate it by sharing the load even as I unburden myself on these pages. One of my oldest friends long ago described me as the most optimistic pessimist he’d ever met. I guess it’s this odd emotional mix that helps keep me going, half expecting that this hair-raising downward trajectory that has me in its grip will ultimately turn out to be a ski jump, and in the end the momentum gathered during this freefall will be transformed into escape velocity, allowing me to soar higher than I ever imagined.

Yeah, wishful thinking perhaps, but on the day of my diagnosis I vowed that if this disease was going to bring me down I was going to go down with all guns blazing, fists bloodied and mouth spewing venom. And should this descent turn out not to be the launchpad of my fantasies, if I ever do decide to pull the ripcord, let that act not be viewed as defeat but rather a final kick to the nuts of the monster. Stay strong, my friends; together we may not beat this horror, but we’ll damn well keep on trying.

Monday, January 18, 2016

An Interview with Dr. Saud Sadiq – FDA Approves Phase II MS Stem Cell Study Conducted by Tisch Research Center of New York

In some dramatic news regarding stem cell treatments for Multiple Sclerosis, the FDA has given its first ever approval for a Phase II Multiple Sclerosis regenerative stem cell trial to the Tisch MS Research Center of New York.

Most previous attempts at using stem cells to repair MS damage have involved intravenously infusing a basic type of stem cell (called mesenchymal stem cells) back into the patient from which they were taken. The Tisch Center (click here) takes this approach several steps further, using proprietary methods to transform raw mesenchymal stem cells into a type of stem cell known as neural progenitors, which are specific to the central nervous system. The cells are then injected directly into the spinal fluid of trial subjects, where, in theory, they should be more effective than raw mesenchymal stem cells at effecting repairs and combating the disease. The Phase I results of the Tisch center’s trial thus far have been quite impressive, offering MS patients worldwide a glimpse into the future of MS treatments and some tangible reasons for hope.

A press release put out by the Tisch Center provides details on what has already been accomplished in the Phase I trial, and what is being planned for the upcoming Phase II study:

"Our unprecedented Phase I results have propelled us into the next phase of research," said Dr. Saud A. Sadiq, Chief Research Scientist at Tisch MSRCNY and the study's principal investigator. He added, "No treatment has shown reversal of established disability until now. The objective improvement experienced in bladder function, vision and walking speed in both secondary and primary progressive MS is remarkable. We now plan to establish efficacy of stem cells as a reparative therapy in Phase II."

The Phase II trial will be a double-blind, placebo-controlled, randomized trial with forty patients in a crossover design. Stem cells are taken from the patient’s bone marrow and manipulated to become brain-like neural cells, a process created and found only at Tisch MSRCNY.  All treatments and research will be conducted at the Tisch MS Research Center of New York and will expand to include an additional leading MS center.

The main obstacle in intiating the study is the need for critical funding. Once funding is obtained, patients will be recruited and the study is anticipated to commence in the summer of 2016.

I had the chance to talk with Dr. Sadiq (who just so happens to be my MS neurologist) about this ongoing and groundbreaking MS stem cell trial, as well as other stem cell related topics. The following interview has been lightly edited for clarity…

How long did it take the Tisch Center laboratories to develop the proprietary process to produce neural progenitor cells from raw mesenchymal stem cells?

Dr. Sadiq: It took about 2 ½ years of intensive lab work, and our lab is the only lab in the world currently using this process.

Is this type of stem cell treatment considered a cure, or can patients expect to require repeated treatments in order to maintain whatever benefits they achieve?

Dr. Sadiq: All of this is still in the experimental phases, so we really don’t know how long the treatments will need to be continued in order to maintain benefit. It’s likely there will be an initial induction period where we will do a number of frequent treatments to induce repair and then to maintain the benefits I think it will require less frequent treatments. But I anticipate that some treatments will need to be given for the duration of the illness, until we find the cure.

What was the treatment protocol during the Phase I trial, and what will the treatment protocol be during the Phase II trial?

Dr. Sadiq: In Phase I we did three treatments over the course of one year, which seemed necessary in order to get some benefit. We don’t know whether the Phase I patients will continue to show benefit or not without further treatment. In the Phase II trial, we are proposing six treatments over a year followed by no treatments over a year to see if benefits are sustained. There will be a control group as well, who will get no treatments the first year and then get six treatments the second year. I anticipate less frequent treatments will be needed to maintain benefit for the duration of the disease until we find a cure.

And would this hold true for any type of regenerative stem cell treatment, such as those being offered by some of the for-profit clinics at which many patients are seeking a single treatment or a single round of treatments over a relatively short period of time?

Dr. Sadiq: Most likely yes, it’s been shown that one treatment probably would be insufficient to even start regeneration. You’ll need multiple treatments…

Are the effects of the regenerative stem cell treatments cumulative?

Dr. Sadiq: You know, we don’t know that yet, in the Phase II trial we intend to collect data on this question…

How much more effective are the neural progenitor cells than the raw mesenchymal stem cells (MSCs) that have been used in other trials?

Dr. Sadiq: Well, as far as I’m aware, the way MSCs have been used in trials so far, there’s not been a single trial that has shown real substantial benefit with MSCs. There’s been some very mild improvements seen in the Cambridge trials, which used one dose given intravenously. It could be that they didn’t use fresh cells or they didn’t use the proper route of administration. Our trial administers the cells intrathecally, directly into the spinal canal. It could be that raw MSCs are in fact effective, but the trials I’ve seen didn’t use multiple dosing. So it’s very difficult to compare the two. But in our hands we found that neural progenitor cells given intrathecally are more effective than raw MSCs.

How much funding is needed for the Phase II trial?

Dr. Sadiq: For the Phase II trial alone we need about $3 million, but for the actual support that we need to build out and expand the labs I’m looking to get $10 million. We need expanded lab facilities and an animal testing facility in place to properly conduct the Phase II trials.

And how much money have you already raised?

Dr. Sadiq: Planning for Phase II we just started, so we haven’t raised anything yet. We have talked to the National Multiple Sclerosis Society, we’ve talked to the National Institutes of Health. We are submitting a grant proposal to the NIH, and the MS Society Is in consultation with me currently to try to arrange funding. We’ll will have to apply for funding grant from the NMSS. We do have a pledge of about $3 million from one donor.

Wow, you have a pledge of $3 million from one donor?

Dr. Sadiq: Yes.

Is the Phase II trial on hold until all of the funding is in place?

Dr. Sadiq: The trial is not on hold, we are really just starting to think about implementation. We just received FDA approval, and we are going to get another MS center involved, I’m in talks with another MS center here in New York, and then after they’re on board we will get things going. So even if we got all the funding right now, we wouldn’t be able to start the trial until late summer 2016. Right now were planning on starting the trial in July or August 2016.

Assuming everything goes as planned, and there aren’t any unforeseen problems, how long do you think it would be until the type of treatment you are trialing would reach common clinical practice?

Dr. Sadiq: It will probably be by the end of the decade, by 2020 I hope if everything goes well.

Do you think there’s any difference in effectiveness between bone marrow derived and adipose (fat cell) derived stem cells?

Dr. Sadiq: Well, we’re not sure. We started working with bone marrow derived cells from the beginning, but adipose derived may turn out to be better because adipose tissues contain a greater number of MSCs, so you may be able to get a better harvest. But because the FDA oversees every project from start to finish, and our trials began using bone marrow derived cells, if we started using adipose cells now we have to go back to the drawing board with the FDA. So in order to continue our ongoing trial protocols, since we started with bone marrow derived cells, we will continue using bone marrow derived cells.

Do you have any thoughts on the clinics that are currently doing mini liposuctions and then re-injecting the cells intravenously the same day or the day after?

Dr. Sadiq: These clinics are just using the stromal fraction, and nobody really knows what that achieves. This process is really not a stem cell therapy, since the stromal fraction only includes a small number of MSCs. It seems like these clinics just want to make money, there’s no evidence that this method would be effective, at least when dealing with neurodegeneration.

What other avenues of research are being pursued in the Tisch MS center’s labs that you consider most promising?

Dr. Sadiq: My goal in life is to find the cause of MS, and that’s really where I concentrate my efforts. I think we have a number of discoveries that are coming together now and I hope that one day soon we will be able to declare that we’ve found the cause of MS.

We do a lot of work with biomarkers as well. In this Phase II trial we are going to look at all the biomarkers that are associated with clinical response, to be able to identify a marker that will be able to predict which patients have the best chance of responding and seeing benefit, and through what mechanisms they are getting better. This is very important work but it’s not the work that drives me to come into the clinic every day at 4 AM.

What does drive you to come to work every day at four in the morning?

Dr. Sadiq: That’s to find the cure to this damned disease.



I can personally attest to Dr. Sadiq’s obsession with finding the cause of and cure for MS. Through the years, Dr. Sadiq and I have developed quite a strong bond, and I know from experience that he can be found hard at work in his clinic and laboratory nearly round the clock, very often at least six days a week. I’ve spoken to Dr. Sadiq via telephone at all hours of the day and night, and have even had office visits with him on the day after Christmas. He once showed up at my bedside at 3 AM when I was hospitalized and suffering miserably from MS related symptoms, to simply be there with me and literally hold my hand. Not your typical doctor, to be sure.

As Dr. Sadiq makes clear, funding is of the utmost importance in order to get this trial up and running in as timely a fashion as possible. There is a tremendous amount of work to be done, and all donations, no matter how small, will make a difference.

As a long-suffering MS patient myself, I know that friends and family are often eager for ways to help fight the disease. While there are many worthy MS charities, in my opinion the biggest bang for the MS donation buck can be had by donating to the Tisch MS Research Center of New York. Donations to the Tisch Center will directly serve to hasten the completion of these stem cell trials and hopefully bring this exciting technology to MS patients worldwide. Please pass the word along, and (click here) to donate.

A big thank you to all who participate in and contribute to this project, and to all the Wheelchair Kamikaze readers that have made their voices heard at the NMSS in regard to funding the Tisch Center’s efforts. It appears that the MS Society may finally be ready to listen, and hopefully the NMSS will this time come through with funding for this vital research.

I’ll keep you posted…