Thursday, April 10, 2014

11 Years Gimpy and the Lessons Learned, Part Two: Medicine

Caduceus Symbol - Medical Symbol MD

Caduceus Symbol - Medical Symbol MD (Photo credit: wcm1111)

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 wrestle 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, 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 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…

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  1. You nail the problem firmly to the wall with your observation that "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. "

    When the change was made to health of Americans as a business model and not a humanitarian need, the lines blurred, and now we are to the point of being dependent on the pharmaceutical companies to lead the way with research and development.

    It's too bad we allowed the governement to walk away from research and relinquish their role of investigator into one of regulator.

    1. I agree completely, Laura. I've said on numerous occasions that capitalism is a wonderful system for creating wealth, but the marriage of capitalism and medicine is an unholy one. Though I do so understand some of the arguments against "big government", there are some things that government does better than the private sector, and medical research is one of them. It's a crime that funding has been savaged for the NIH. Considering that three of the Air Force's newest fighter jets cost about $1,000,000,000, you'd think that there could be some money found for a Manhattan Project style effort aimed at eradicating some of our most corrosive diseases. I'm sure the Air Force could live without those three airplanes.

  2. Marc, you frame the issue of medical research better than anyone else. Sometimes I think I have a solid grasp of the complexity, but every time I read your take on the issue I walk away so much better informed. You show your insight when you point out that this is not a problem of bad people, but a problem of bad societal structure regarding medical research, and you reveal your humility when you admit you don't have the answers. I wish more critics had your humility.

    1. Thank you for the very kind words, Mitch. Our medical research model is completely dysfunctional at this point. This is openly acknowledged by most physicians and researchers, yet nobody seems to have any answers. I suppose there are answers out there, as I alluded to in my previous comment, but they would require a top-down re-examination of our societal values. But even then, so much money is at stake, and so much money is being spent to influence, that no honest effort could really ever be mounted. The problems with medical research are only symptomatic, unfortunately, of the larger problem of big-money influence has on so many of our societal structures. I continue to hope that things will somehow get better, but instead they only get worse…

  3. Hear! Hear!
    (And may I recommend a quick watch of parts of Avatar as an antidote for the wanting-to-walk pangs.)

    1. I have yet to see avatar, and I really must. We even have a 3-D TV, so I can see it in all its glory.

      Not that much 3-D content available on cable, unfortunately. I wonder if a 3-D avatar is available "On Demand"?

      Thanks for your comment…

  4. Another great article Marc, thanks.
    At present I am reading Terry Wahls latest book 'The Wahls Protocol' and it adds a new dimension to your article. I have often seen that in Medicine there is almost a hierarchy of deciders in the direction of research and most particularly understandings of outcomes from that direction of research.
    It's hard to explain simply, although I believe the insights in Terry's book outline the issues as basically being either side of a divide in Medicine, the 'Conventional Medicine' and the 'Functional Medicine' split.
    The Functional Medicine model and a change in funding for research and purpose of research could change the World!
    Imagine that!
    Take care, but take it!

    1. I haven't read Dr. Wahls book, but I'll have to take a peek. The problems with our medical research model are many, and certainly one of them is a very entrenched status quo that is resistant to paradigm changing new ways of thinking about disease. Clearly, given the lack of cures over the last three or four decades, we've reached some sort of impasse in the kind of research we are currently undertaking. I see hints here and there of promising new approaches, but there's so much "noise" out there that it's difficult for any clarity to break through…

  5. Marc, I would suggest that the problem of pharmaceutical research is much worse than you suggest for two reasons. The first is that pharmaceutical companies do little basic research to come up with innovative ideas. They do spend significant sums on drugs that have made it to the point of at least Phase 2 trials, but they play little role in funding the critical research to get to that point.

    That funding is left to non-profits such as NMSS and governmental organizations. But again, pharma is able to ensure that these groups do not fund anything that might undermine either existing products or products that they are testing in Phase 3 trials.

    What this adds up to is a two-pronged assault on breakthrough research.

    While it would certainly be nice to just walk and let someone else solve this problem, patients and their friends and relatives are the only ones with a direct incentive to fix the problem. I await your solution. :>)

    1. I'm afraid you may have a long wait. It's easy to paint the pharmaceutical companies as villains, and in many ways their own actions make it even easier. The fact is, though, that we as a society have allowed them a very long leash, as most of what they do falls within legal boundaries.

      There is a tremendous gap between bench research and projects that make it eventually to market. Way too much promising research falls into a black hole, stuck in the test tube phase because of lack of funding. But, can we really expect for-profit pharmaceutical companies to fund research projects that might undermine their primary directive? We should have never handed the reins of medical research to them in the first place, and now we manifest the consequences. Faulting the pharmaceutical companies for wanting to make money is like faulting a bird for having a beak.

      Having said that, it is obscene that the pharmaceutical companies now control not only the research itself, but also the way that that research is disseminated. The medical journals have become quite dependent on Big Pharma funds, and the FDA is quite often under the sway of pharmaceutical industry lobbyists.

      But this is the way of business in America these days. Regulations have been gutted, and money is equated with free speech. The magic hand of the marketplace can do many things, but so far it doesn't seem to have the healing touch.

  6. As usual, well put and sadly too true. I read this piece stoically, nodding at its truth, acceptingly.

    Then I read your parting line..."Really, though, I just want to take a walk…"

    And then I cried.

    1. Sorry to have made you cry. That's never my intent.

      It sure would be nice to take a walk, though…

      Thanks, as always, for your comments…

  7. In no way connected to this article...but why wouldn't something like this benefit MS patients who have lost functioning also? Has this been researched, do you know...treating MS like paralysis?

    I'm not posting the URL because often that is viewed as spam in comments, but the article can be found by searching for these key words:


    1. I'm pretty sure this technology has the potential to help people with MS, although it might be more complicated for some because of multiple spinal lesions. I would think, though, that in many cases something like this would be of help to most MS patients. Thanks for the link…

  8. I add my thanks. Seeing how big pharma is, in reality, constrained to make profits seems to me to shift the attention back to the government and the funding of research.

    I'd really like to get your take on 4 amino piridine (AKA Fampridine or Fampyra)

    This is a good example of something you mention - the re-purposinng of existing medication. This former heart medication is now indicated, in slow-release form, for progressive MS. It improves end to end conduction through damaged nerves by blocking the potassium channel which I understand as propagating sideways, out of the nerve.

    Trails have measured an improvement in walking tests. I don't walk but see a distinct improvement in other ways.

    1. Hi David, thanks for your thanks.

      Ampyra (the drug's name in this country) was never actually a heart medication. In its former life, the compound was and is used as an aviary poison. Yup, it's used to wipe out large populations of birds. Fries their little nervous systems.

      Before it was marketed as Ampyra, many patients were taking 4-AP, as the chemical is known, in capsules procured from compounding pharmacies. In fact, you can still get the stuff from compounding pharmacies, for a tiny fraction of the cost of Ampyra.

      As you note, Ampyra is a time released version of the stuff, but you can get a time released version from a good compounding pharmacy as well. I have heard from several patients, though, that Ampyra seems to be more potent than the compounded stuff.

      Glad to hear that you are seen benefit from taking Ampyra. I took the compounded version many years ago, after I was first diagnosed, and it did seem to have some effect, but I didn't continue with the stuff. I tried Ampyra when it first came out, and it made me quite "wired".

      Clinical trials showed that in about 30% of trial subjects, Ampyra increased walking speed by 30%. The stuff basically helps the nerves conduct signal, and many people do report that it gives them a much-needed boost in muscle strength.

      Thanks for your comments…

  9. Marc,
    As usual, you are able to succinctly delineate and elaborate on the very reality that those who have MS deal with continually.
    I cannot begin to describe the frustration and despair that my son experienced trying to find a way to thwart his progression. Moreover, now that he has died, I have no words for the thoughts and laments that torture me in regard to his medical treatment. As you say, it is not necessarily the people, it is again, the system that stinks.
    I asked him before he died, what was the one thing he really missed. "Walking".

    1. I know all too well the trials and tribulations that the "system" put George through before he died. Most of the doctors try to do their best, but they have a limited toolkit. There are a few out there who do put monetary considerations at the same level of patient well-being, but for the most part healers do want to be healers. As the old saying goes, the road to hell is paved with good intentions. I hope that life is being gentle to you… XO

  10. This is a very powerful yet disheartening piece you have written. I love reading your work, and updates such as this one are just icing on the cake. I almost wish they would make a movie out of this general plot just to fill the majority of America in on this situation. But I know, as a movie viewer, it would fall on mostly deaf ears. I couldn't imagine people sitting through a story like this unless it was directed by James Cameron and starred Brad Pitt & Jennifer Garner in some mysterious caper to solve the crisis of the medical industry. Almost like a "real life" DaVinci Code.

    The unfortunate truth is that we're mostly fucked. That is, unless, one of the few and far between people that go against the grain actually develop something that's profitable and actually works. Better yet, if we're chosen to be part of the trial group that actually gets to use a treatment before it's squashed.

    /sigh, back to being optimistic.

    1. I think a big problem is that most people don't want to think about disease and illness until they are struck with disease and illness. It's kind of a "whistling past the graveyard" mentality. And then you get sick, and suddenly you're stuck in a quagmire of unfulfilled promise and incredible frustration.

      It is very difficult for some people to wrap their heads around the fact that it just doesn't make financial sense to cure diseases when you can treat them with obscenely expensive drugs that patients must stay on for the rest of their lives. That's the premise on which our entire medical research model has come to be based, and it's a huge impediment to any dramatic progress being made.

      There is always the hope, though, that an undeniable medical breakthrough will revolutionize things. Such a breakthrough would be much more likely if the vast majority of research dollars weren't being spent chasing down newer and more patentable compounds based on those that were profitable in the past.

      I do think that the status quo will eventually collapse, simply because medical costs will bankrupt Western societies unless some very basic changes are made. We are really living in a warped reality…

  11. all too true. i've been reading dr. terry wahls book, and been so encouraged i've taken on the challenge for her diet. she was living with a very aggressive MS, in a reclining wheelchair, when, through extensive research, she created her "wahls protocol," based on a paleo diet, and within 6 months, she was walking, within a year, she was riding her bike. reading her story, i begin to feel that maybe we can step out of the shadow and grip of drugs and docs who tell us, "this might help," and take control of our health. hers is the first protocol i've ever come across that suggests a path to healing, not just slowing the downhill slide. interesting stuff, and highly recommended. i'm no doctor (don't even play one on tv) but i'm intrigued.

    1. I am familiar with Dr. Wahls approach, and I do find it interesting. I don't doubt for a minute her honesty, but at the same time I'm always very dubious about supposed cures that rely on diet alone, especially for a disease as heterogeneous as MS. Certainly, a low-fat, high protein diet is a good thing, and certainly might benefit most MS patients, but the expectation of a cure may be stretching it just a bit.

      I don't mean to discourage anybody from trying Dr. Wahl's diet, or any other proposed MS diet, but as always caution to not let hope eclipse reason. Certainly mitochondrial health (a major component of Dr. Wahls theories) is very important. You might also want to read up on the Swank diet, which has been around for something like 50 years, and has also seen its share of success.

      Please do keep me (us) updated if you do try the diet. Wishing you well…

  12. Marc,

    Thanks for the writing. It is good as always. Last time, you mentioned you would try MitoQ. I was just wondering how it goes if you had started. Is there any place where we can buy it at a reasonable price? What dose do they use in progressive MS? I think neuroprotection could be a key in PPMS.

    Any experience with LDN in PPMS with no gadolinium enhancing lesions?


    1. Thanks for your comments. Just started the MitoQ, so it's too early to tell. I believe the only place you can purchase the stuff is from the MitoQ website, and have it shipped from Australia. They are using 20 mg a day for all forms of MS. I agree that neuroprotection is a key for not only PPMS but all MS. MitoQ looks to be a very powerful antioxidant, but I'm not sure it would qualify as a neuroprotective agent.

      I tried LDN way back when I was first diagnosed, maybe nine or 10 years ago. Didn't do me any good. Others report better experiences, though. Hard to quantify many of these alternative therapies, most often those with positive results post on the Internet, and those with negative results simply don't say much.

      Wishing you the best…