Last month I “celebrated” the 11th anniversary of my MS diagnosis
with part one of Lessons Learned (click here), which looked at some of the insights my
grappling with the disease had revealed about life, both the one lived inside
my head and the kaleidoscopic swirl of the world around me. Along with the
expected liberal dose of anguish, the disease has also brought with it some
unexpected flashes of understanding, and maybe even something akin to a bit of
wisdom. Not to say that I’ve got much of anything figured out, but I have at
times gained a sense of clarity that was most often missing back when I was
healthy.
My decade plus grapple with chronic progressive disabling illness has also
taught me a hell of a lot about modern medicine and medical research.
Admittedly, these are lessons I naturally would rather have not had to learn,
but I didn’t have much choice in the matter. Multiple sclerosis is an enigmatic
disease, and the rarer, progressive forms of the disease are particularly
inscrutable, but my affliction managed to wake within me a long dormant inner
scientist, or an at least inner scientist wannabe, who finds a lot of this
stuff fascinating, frustrating, infuriating, and maybe sometimes even a little
bit fulfilling. I sure do wish that wake-up call had come in the form of
something much less horrific, but again, that wasn’t up to me. If nothing else,
the time since my diagnosis has made for quite an education.
When I was living my long-ago and far away healthy life, my interactions with
the world of medicine were usually brief and fairly perfunctory, even if I did
have a pretty good working knowledge of disease due to my well hewn
hypochondria. I took comfort, though, in the seemingly nonstop procession of
blaring headlines and breathless news items regarding the latest medical
breakthroughs, which painted a picture of modern medicine as something close to
a bright and shiny miracle machine, ever more able to conquer devastating
illness and fix broken bodies.
When I got sick, however, it didn’t take long for me to come to the
uncomfortable realization that I’d been somewhat hoodwinked, that although some
specific areas of medicine had seen huge advances, large parts of the modern
medicine miracle machine so often portrayed in the media are in fact held
together by shoestring and chewing gum. High-tech and expensive shoestring and
chewing gum to be sure, wielded by some dedicated and knowledgeable people, but
in far too many cases not much more effective than the shoestring and chewing gum
that existed half a century ago.
Tremendous breakthroughs have been made in the surgical arena, where procedures
that are now done daily would have been looked on as the stuff of fantasy 50
years ago. It wasn’t until 1954 that the first kidney transplant was performed,
and over the next 15 years transplants of lungs, livers, and hearts were first
successfully achieved. These procedures, all lifesavers, are now common if not
routine. The advents of bypass surgery and angioplasty have been incredible game
changers in the field of cardiac medicine, and neurosurgery too has witnessed
advances barely dreamt of just a few decades ago. Surgery has become
increasingly less invasive and much more survivable. Back in 1989 I suffered a
detached retina, resulting in a surgery that required a four-day hospital stay
and a two-month convalescence. Today, the same procedure is done on an
outpatient basis. Incredible.
When it comes to treating many diseases, though, shockingly few tangible
advances have been made in the last 50 years. Antibiotics have revolutionized
the treatment of diseases caused by bacterial infections, but wide swathes of
other illnesses have proven incredibly hard to crack. Neurologic diseases such
as ALS, Parkinson’s, Alzheimer’s, and other less common maladies of the nervous
system remain as untreatable as ever. The so-called autoimmune illnesses like
diabetes, lupus, multiple sclerosis, and rheumatoid arthritis continue to
stymie researchers, and though some of these diseases now have treatments that
improve quality of life, none have divulged any of the secrets that might lead
to a cure. Despite massive amounts of time and money spent on research, many
cancers remain just as deadly today as they were in years past. Though some
specific malignancies such as those of the breast, prostate, and lung are much
more survivable today than ever before, the overall cancer death rate has
decreased, astoundingly, only 5% since 1950 (click here)! When it comes to the vast majority of
cancers, medicine has learned how to keep those afflicted alive somewhat
longer, and there is of course much to be said for that, but it hasn’t found a
way to keep them from dying of their malignancies. All in all, many diseases,
though perhaps better understood, remain devastating and deadly despite the
efforts of the modern medicine establishment. The situation makes me want to
howl in dismay.
Naturally, the disease I’m most intimately familiar with is MS. Surely, there
have been significant advances made in treating the relapsing remitting form of
the disease, but the progressive flavors of the disease remained wicked,
untamed, and diabolical beasts. Though the mysteries of MS are slowly being
unraveled, the advances have been incremental, and each new discovery seems to
only open the door for more questions. Just a little over 20 years ago there
were no treatments for even relapsing remitting multiple sclerosis (RRMS),
aside from the use of intravenous steroids to help calm down active relapses.
The disease was considered by many doctors to be a “diagnose and adios”
illness, for which not much could be done. Today, there are 10 FDA approved
disease modifying drugs on the market, with a handful more on the way. None of
these drugs is perfect, with a wide variance of effectiveness, tolerance, and
potentially dangerous – and even deadly – side effects among them, but they
have improved the quality of life of people with RRMS, in many cases
dramatically.
I was intensely skeptical and harshly critical of some of these drugs when they
were first introduced, thinking that their risks would far outweigh any
potential benefits, but time and mounting evidence has softened my views. Facts
are facts, and the preponderance of evidence shows that when administered
properly to diligently monitored patients, even those MS drugs considered the
most dangerous have had tremendous positive impact on many of the relapsing
remitting patients who take them, at times even allowing some patients to live
lives free of any evidence of disease activity, and experienced neurologists
have learned to manage the risks involved quite well. That said, the status quo
remains unacceptable. There is still nothing for us “progressives”, and all of
the current MS drugs tinker to a lesser or greater extent with the workings of
the intensely complex human immune system, the product of tens of millions of
years of evolution. It’s clear that the aberrant immune response that has
become the hallmark of MS is in reality a symptom of a much greater and as yet
undiscovered ill, and continued focus on that immune response will not lead to
a cure. Unfortunately, the very success of the immunosuppressant agents used to
treat MS has made the search for the ultimate cause of the disease all the more
difficult. Why? Because, quite simply, our system for medical research is flat
out broken.
Up until about 20 or 30 years ago, most medical research was done on behalf of
governments and academia, for whom profit potential didn’t much play into the
equation. Since the 1980s, though, more and more research has been funded by
the big pharmaceutical companies, and today upwards of 75% of all medical
research is powered by pharmaceutical company monies, with that number growing
ever higher due to our current economic and political climate. Though some of
the business practices of these companies can be nauseating, there’s nothing
inherently evil about the companies that develop, market, and manufacture
pharmaceutical products.
It’s vitally important when thinking about these Big Pharma companies to keep
in mind that they are publicly traded for-profit entities, and as such they are
mandated by law to be beholden to their shareholders, not to the end-users of
their products – otherwise known as patients. This dynamic creates some
inherent conflicts of interest, as the mission of any business is to generate
ever-increasing profits, and when it comes to medicine greater profits do not
always translate into greater therapeutics. In some cases, the very reverse may
be true.
Simply put, the job of a drug company CEO is not necessarily to produce the
most effective drugs, but the most profitable. In point of fact, if a
pharmaceutical CEO put medical potential above profit potential he could very
well be breaking the law. Therefore, pharmaceutical company research monies
pour into projects that stand the greatest chance of generating terrific
profit, which are likely not efforts that might upend an already lucrative
business model. This is why so many of the new drugs we see are of the “me too”
variety, variations on older drugs that have already proven their profit
potential. The corrosive influence of big money generated by blockbuster drugs
has thoroughly infiltrated our medical research model, skewing the focus of
much medical research from purely scientific to also encompass the
predilections of the marketplace.
For their part, researchers, as well-intentioned as they may be, must pay the
rent and feed their families just like everybody else, and so are drawn to
projects most likely to receive generous funding, which are these days are
those that have the attentions of the big pharmaceutical companies. Thus we
have on our hands a kind of highly dysfunctional perpetual motion machine,
fueled by people performing their jobs to the best of their abilities, which
unfortunately is not constituted to produce the results most desired by legions
of sick people and the professionals who treat them.
The problem is insidious, and is at this point woven into the very fabric of
the system. Though this system has certainly come up with its share of medical
advances, it hasn’t produced much in the way of cures, and in fact can stymie
potentially paradigm shifting research that doesn’t present any obvious profit
potential and/or threatens the status quo. Older drugs that might be repurposed
for the greater good, or natural and alternative remedies that might be as
effective as pharmaceutical products stand very little chance of receiving the
research dollars needed to prove their worth simply because they have no
potential to generate tremendous amounts of cash. Radical new concepts are
often shunned not out of evil intent but for cold business reasons, as bringing
them to fruition would be cost prohibitive, and even if successful they could
kill the proverbial goose that lays the golden egg. We have turned diseases
into multibillion-dollar industries and the sick into consumers in a
topsy-turvy medical research environment in which success is most often
measured in dollars earned, not diseases eradicated or people cured. What’s the
answer? Got me, I’m too busy slowly watching myself becoming a complete
cripple.
So, where does this leave me after my 11 year struggle with MS? Well,
conflicted, to say the least. I’ve met incredibly dedicated professionals who
are literally obsessed with finding the cure for MS, filling me with hope.
Simultaneously, though, I’ve come to understand that despite these folk’s best
efforts, the system within which they work is fundamentally flawed, a fact
which fills me with consternation. That gleaming tower that modern medicine
appeared to be when I was healthy has instead been revealed to be more a
product of spin and public relations than reality. I’ve evolved as a person and
a patient, as I’ve come to understand that there are no absolutes when it comes
to life and medicine, and especially when it comes to a disease as devilish as
multiple sclerosis.
Despite the mysteries of the disease and the madly dysfunctional research model
that is now the norm, each day I read some stimulating new bit of research, or
talk to a researcher wholly dedicated to the cause, and can’t help but nurture
a persistent optimism, even in the face of my relentlessly progressing disease
and the tremendous obstacles that stand between me and the realization of my
dream to once again be whole. Stem cells may hold the answer, or anti-HIV
drugs, or something completely unexpected that may pop out of some far away
test tube tomorrow. We can only hope that if and when such a discovery is made,
it manages to see the light of day.
Really, though, I just want to take a walk…
Marc Stecker
…….
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