Eyeballs (Photo credit: Skrewtape )
(If you have received this via email, the following post contains a slideshow and a video, which can be viewed on the Wheelchair Kamikaze website. Please ( click here ) to view the multimedia content on your web browser.)
Gadzooks! Zounds! Great Gooble Gobble! Late last week Wheelchair Kamikaze received its one millionth page view. 1,000,000! I’m absolutely gob smacked, even though I’m pretty sure about half a million of those page views can be directly attributed to my mother.
In the nomenclature of the Internet, each page view is just what it sounds like, an instance when somebody finds their way to a specific website through a search engine or link and gives it a peek. So, in the four years and 11 months since its inception, my modest little abode on the Internet has been looked at by folks 1,000,000 times, a figure which truly boggles my mind. People from all over the world have visited this place; the stats provided to me by Google show that in the last month alone Wheelchair Kamikaze has been frequented by people in (in alphabetical order): Australia, Belgium, Canada, China, Costa Rica, The Czech Republic, France, Germany, Iraq, Israel, Luxembourg, Malaysia, Mexico, The Netherlands, New Zealand, Norway, Poland, Saudi Arabia, Serbia, Spain, Sweden, Switzerland, Ukraine, United Arab Emirates, United Kingdom, The United States, and Venezuela. Holy crap!
In all honesty, I never expected more than a couple of dozen people to ever look at this thing, as when I started Wheelchair Kamikaze I wasn’t even all that sure of what a blog actually was. I’d been quite active on several online MS forums for a number of years, and during that time several fellow forum members intermittently urged me to start writing a blog, a notion to which I wasn’t all that favorable. I’d never really ventured into the “blogosphere”, and my conception of what a blog could be was fairly limited. In my mind a blog was pretty much just a sort of online diary, and I really didn’t think that what I did or thought would be of interest to anybody outside of the small sphere of human beings who actually knew me.
It wasn’t until my sorry ass landed in a wheelchair, and, at my wife’s urging, I attached a camera to that wheelchair and made a few videos of my wheelchair rides through Manhattan – which friends and family found amusing – that the idea of staking out my own virtual homestead took hold. Okay, I thought, a blog could provide me a place to house the videos and photos I took from my wheelchair, and maybe the occasional scribble or two, in a spot that would be easily accessible to the relatively few people who knew I existed. Never in my wildest dreams did I imagine that this site would provide a conduit through which a part of me could reach out and touch people all over the world, and that in turn these virtual connections would enrich my life in ways that are literally beyond words.
Wheelchair Kamikaze has provided a kind of method to the madness of my being stricken ill, and has many a time proven to be a lifeboat of sorts, helping me keep my head above the churning, tempestuous psychological waters of dealing with my chronic progressively disabling disease. For that I am more than grateful, and to all of the wonderful people who have contributed to those 1,000,000 page views I offer my most humble gratitude, which hardly seems sufficient given the remarkably positive impact creating this blog and interacting with those who view it has had on my life. It may be overstating it to say that Wheelchair Kamikaze has been my salvation, but it wouldn’t be overstating it by much. So, thank you, thank you, thank you.
Okay, with that bit of mushiness done with, let’s get to the business at hand, a rundown of various pieces of MS related news that have garnered my attention over the last few months or so. As usual, these pieces range from the sublime to the ridiculous, and I hope you’ll find them pertinent, useful, interesting, and/or amusing. On with the show…
♦ A new MS drug called Lemtrada has been approved for use in Canada ( click here ), Australia ( click here ), and the European Union ( click here ), but, surprisingly, not here in the United States, where the FDA rejected Lemtrada’s application for approval ( click here ). The FDA’s rejection comes as something of a shock, as it was widely expected that Lemtrada would receive the FDA’s authorization, despite the problematic side effect profile of the drug.
Lemtrada isn’t actually a new drug; in a previous incarnation, when it was called Campath, it had been used successfully to treat leukemia and lymphoma since 2001. The drug is a monoclonal antibody, a member of the same family of drugs as Tysabri, and works by dramatically depopulating immune system cells in treated patients. Lemtrada is so effective in wiping out its immune cell targets that it in effect prompts the body to “reboot” the immune system, much the same way that certain stem cell therapies attempt to do. The idea is relatively straightforward – wipe clean a person’s immune system, in the hopes that when that immune system is reconstituted it will no longer have an appetite for the patient’s own central nervous system cells. This relatively straightforward concept has proven somewhat tricky to pull off in practice, but Lemtrada does seem to accomplish this feat over an extended period of time.
When used to treat MS, Lemtrada is given intravenously in five day courses two or three times over a 12 month period. After this initial one-year period of dosing, clinical trials have shown Lemtrada to be remarkably effective when given to relapsing remitting patients with active disease. One study ( click here ) showed that five years after treatment 65 percent of such patients were free of clinically active disease, 72 percent were relapse free, and 87 percent of Lemtrada treated subjects were free of sustained accumulation of disability. In other words, five years after treatment, well over half of the patients given Lemtrada showed virtually no signs of multiple sclerosis activity – they were, for all intents and purposes, MS free.
What then, is the problem? Unfortunately, Lemtrada’s effectiveness comes at a price. Approximately 30 percent of Lemtrada treated patients develop autoimmune thyroid disease, which, though not to be pooh-poohed, can be effectively treated using conventional therapies. More disturbingly, some patients develop an autoimmune blood disease called immune thrombocytopenia (ITP), which, if not caught in time, is often fatal. Patients can be effectively monitored for ITP, but the fact that Lemtrada leaves patients susceptible to the potentially deadly disease is problematic, to say the least.
In those places where it has been approved for use, Lemtrada poses RRMS patients quite a dilemma. Is the prospect of being disease-free five years after treatment worth the risks associated with autoimmune thyroid disease and ITP? Quite the conundrum, but I would think that at least some folks being ravaged by highly active MS, experiencing relapse after crippling relapse, would certainly be willing to take the risk. As we’ve seen with Tysabri, patients can be quite tolerant of risk when a drug dramatically increases their quality of life. It will certainly be interesting to watch as the Lemtrada saga plays out in the regions that have given it approval.
Just as a side note, Genzyme, the drug company that manufactures Lemtrada, engaged in some sleazy activity several years ago by pulling Campath off the shelves when it appeared that the drug – newly named Lemtrada – would sail through the approval process for use as an MS therapy ( click here ). Why pull Campath off the shelves? Because Genzyme planned to dramatically hike the price of the drug when they changed its name from Campath to Lemtrada and switched focus from leukemia/lymphoma patients to those suffering from MS. When used to treat leukemia or lymphoma, a typical course of Campath treatment cost about $60,000. Since MS patients would need a far lesser dose of the drug, the cost for a course of multiple sclerosis treatment would only be about $6000. So, Genzyme made Campath unavailable and only planned to reintroduce it as Lemtrada once it was approved for use in MS patients, at a dramatically higher price, of course.
Although the drug has been approved in Canada, Australia, and EU, those places restrict the price of drugs, something that is unheard of in the US, where drug companies can pretty much charge whatever they please. And now the FDA has failed to approve Lemtrada, foiling Genzyme’s Machiavellian business plans. What goes around comes around, as they say…
♦ Having mentioned Tysabri and the fact that it improves the quality of life for many of those taking it, here are two studies that illustrate just that. One study ( click here ) shows that Tysabri treated patients require less sick leave from work 12 months after initiating treatment. This retrospective study demonstrates that one year after initiating Tysabri treatment, MS patients required 33 percent less sick leave than before they started on the drug. Another study looked at MS patients requiring inpatient hospital stays, and found that Tysabri treated patients exhibited “significant reduction in the percentage of patients with MS related inpatient stays, MS related inpatient costs, and length of stay” ( click here ).
Most MS patients know that taking Tysabri carries with it the risk of developing a potentially deadly brain infection called PML. Now that Tysabri has been on the market for a considerable amount of time, we have reliable figures as to just what the risks are of developing PML while on the drug. The latest figures indicate that patients who are JC virus negative (JC virus is the pathogen that causes PML) have very little risk of developing the infection, about a 1 in 10,000 chance.
For patients who test positive for the JC virus, two factors come into play in determining their risk of developing PML. The first is whether or not they’ve previously been treated with immunosuppressive drugs, and the second is the amount of time they’ve been on Tysabri. JC virus positive patients who have been treated with prior immunosuppressants have a 1 in 556 chance of developing PML during the first two years of treatment, and a 1 in 89 chance in years two to four.
JC positive patients who have not been treated with prior immunosuppressants need to keep a careful eye on the amount of JC virus antibodies present in their blood, which can now be checked by blood tests. Depending on these levels, the chance of developing PML for these patients in the first year of Tysabri treatment ranges from 1 in 1000 to 1 in 10,000, in years two through four from 1 in 123 to 1 in 3333, and in years four through six from 1 in 118 to 1 in 2500.
The above figures can be viewed nicely in the slideshow below. Click the symbol in the lower right-hand corner of the slideshow to view fullscreen (if that doesn't work, right-click on the symbol and choose "open in new tab"). I’d advise all Tysabri patients to familiarize themselves with these numbers, and make risk/reward calculations based on their individual circumstances, in conjunction with their neurologists. Knowledge is power, people; arm yourselves accordingly.
Barts MSer PML Risk Guide Dec 2013 from Gavin Giovannoni
♦ One of the big problems I have with all of the currently available MS treatments is that they don’t do anything at all to address the root cause of the disease. How can they, since the root cause of MS remains completely unknown? Several recent discoveries may shed some light on that elusive cause, which increasingly appears to be at least partially infectious in nature. In one study, researchers found evidence that a soil-based bacteria, which has rarely if ever previously been found in humans, may be prevalent in MS patients ( click here ). Researchers reported that “that we identified this bacterium in a human is important enough, but the fact that it is present in MS patients is truly significant because the toxin targets the exact tissues damaged during the acute MS disease process.”
Another study found toxins secreted by bacteria associated with sinus infections in the cerebrospinal fluid of MS patients ( click here ). This is important because most blood-borne bacteria are blocked from entering the central nervous system by the blood brain barrier, nature’s way of keeping the brain and spinal cord isolated from the nasties that can infect other parts of the body. Infections in the sinuses, though, can circumvent the blood brain barrier by leaking directly from the sinuses into the central nervous system, opening up the possibility that nose to brain transport of bacterial toxins may play a key role in the MS disease process.
Though studies such as these are far from definitive, they do at least attempt to answer THE key question regarding MS: what in heaven’s name causes the freaking disease? There will never be a cure for the MS until that query is answered, and far too little time, effort, and money is currently being spent attempting to unravel this all-important mystery. One would think that such inquiries would be at the forefront of MS research, but instead, because most research is funded by pharmaceutical companies who must turn a profit to survive, the majority of MS research is currently targeted at finding new and better ways to suppress the immune system, resulting in ridiculously expensive drugs that may tame the disease but will never cure it. I’ll practice some self-restraint and stop this line of argument now, before I start ranting and raving and giving myself and my readers a migraine. Arghhh!
♦ Okay, on to one of my favorite subjects, the wonderful world of asinine research. Crack researchers in Germany have determined that spasticity is a problem for MS patients ( click here ). When I say “crack researchers”, I mean that the researchers must have been smoking crack. How else to explain them wasting time and precious research money conducting a study that confirms what is obvious to anybody suffering from MS spasticity, or anybody observing, even from a distance, somebody suffering from MS spasticity? The researchers could have spared themselves a lot of effort by just asking me or some of my MS buddies about spasticity. Spasticity sucks. End of study.
For those who are blissfully unaware of MS spasticity, the phrase refers to muscles that are rendered stiff and nonfunctional because they receive nerve signals to contract but not the requisite impulses to relax due to the fracked up nature of the MS ridden central nervous system, replete with faulty wiring and short-circuits. Spasticity can afflict almost any muscle in the body, and often causes considerable disability and pain. In fact, many MS patients consider spasticity their most troublesome symptom.
Now, through their earthshaking work, German researchers have, after fastidious and meticulous investigation, determined that “MS patients with spasticity suffer a significant burden because of resulting disabilities and reduced quality of life, especially in cases of severe spasticity”.
HOLD EVERYTHING!!! LIGHT MY PANTS ON FIRE!!! Do they mean to tell me that my twisted and clublike right arm and my clawlike right hand are not doing me any favors, and are in fact a “burden”? That my quality of life might be better if putting on a shirt, sweater, or jacket didn’t require my gimpified body to attempt the moves of a circus contortionist? That the “burden” of my disease would be less if I – gasp – didn’t have any spasticity? And all this time I’ve been gazing upon my twisted and useless appendages with such warmth and affection. Stupid me!
Let me save any researchers currently working on similar studies a lot of sweat and elbow grease. Not only does spasticity decrease quality of life, but weakness and paralysis can also be quite “burdensome”. Yup, arms and legs possessing all of the strength of a fart in a hurricane should not be counted as one of the pleasures of life. Also, bladder and bowel issues are not nearly as much fun as a night at the GiggleSnort Motel. That’s right, contrary to popular belief, urinary frequency and urgency don’t make for a whooping good time. Yes, I’d like to down a couple of pints of icy cold beer as much as the next guy, but I’d better be sitting on a toilet when I do so, because you could calculate the time it takes for the liquid to go from mouth to urethra with a stopwatch. Now, that might be the subject for some fascinating research.
♦ Being “retired” and grappling with a chronic debilitating illness leaves one with plenty of time to contemplate the mysteries of life, wondering just what the hell it’s all about. Gratefully, I came across the following video, in which Father Guido Sarducci (comic Don Novello) explains The Secret of Life. I actually recall the good Father doing this bit on Saturday Night Live back in the late 1970s, when the cast included such greats as John Belushi, Gilda Radnor, and Dan Aykroyd. I remember loving this monologue back then, and the intervening decades have done nothing to diminish its effect on my funny bone. Yup, life is a job, we’re all just here collecting our paychecks, hoping that our balance sheet comes out in the black when all is said and done…
Ciao for now…