Are We There Yet?/My Internal Debate SLASH Debacle Part I

I cannot even describe how tired I am of this election season. Thankfully it's nearly over, if for no other reason than - BEFORE - people used to email me awesome jokes and pictures and - NOW - all I get is shit about why I need to hate Obama or hate Palin (not giving me reasons why I should LIKE the other candidate, just why I should HATE this one). I need jokes and other good stuff; after all, laughter IS the best medicine and VERY complementary to my self-designed, self-tailored, mostly-non-medical MS regimen. Sadly, I've gotten nothing good to post at Mainlining Mountain Dew, the outlet for my funny bone. That poor site (and my funny bone) has been sorely neglected. It's depressing, and that is definitely NOT good medicine. Once this clusterfuck is over, though, I feel confident that my previously steady flow of stuff to laugh at (or to laugh with???) will return. The end is in sight, but we won't get there soon enough.

And now off on one of those notorious "asides" I like so well... Since beginning my own personal "treatment program," I feel about 300% better than I have at any given point since August 2006 when MS managed to land a death grip on my life. While I'm not at 100% and in all reality do not expect to ever be there (I wasn't 100% before this happened, so I don't see how I can get back to something I was not in the first place), at least I've lost that feeling of blackness and bleakness (I believe it's called "impending doom") I'd been experiencing even as recently as a couple of months ago, before changing the way I dealt with my disease.

As a patient and as a health care worker, I have been indoctrinated as to the expectations, limitations, and efficacy of the practice of medicine. With this diagnosis, I had basically been given a brush and told to paint the floor while some asshole bricked up the door behind me, so I ended up painting myself into a corner. "There is no cure for multiple sclerosis." I learned this little factoid* in 1995 in a pathophysiology class. I heard this again in 2007 with my formal diagnosis of MS, some 15 months after the sudden and rapid progression of symptoms from mildly irritating subjective right-sided weakness to profound bilateral lower extremity and right upper extremity paresis, hyperreflexia and gait ataxia, and 4 months after the loss of vision in my right eye, all generally considered poor prognostic indicators.

I was devastated.

"There is no cure." Twelve years had lapsed between the first time I heard it and the next, yet nothing had changed. Essentially, being given a diagnosis of multiple sclerosis is tantamount to being handed a signed and sealed death warrant authorizing a slow, painful, and peculiarly unpredictable death. (And death penalty opponents whine about some fucker getting a shot to go to sleep before he dies peacefully for hacking someone to pieces, and the worst thing I've done is set a mouse trap then cried because the fucking mouse got caught...)

There is no cure, but why? Many reasons, from what I can tell, starting with the fact that, statistically, MS is classified as a "rare" condition. More common or pervasive conditions are going to get greater attention, and that's just the way the ball bounces. Same as in the emergency room; if you walk in with a cut on your finger or a booger in your eye, you're going to take a back burner to the guy who just came in with a gunshot wound to the chest or the woman in cardiopulmonary arrest on the other side of the curtain. Many MSers continue with normal, productive lives and do not lay too great a burden on "the system" as far as disability. And most MSers aren't squeaky enough wheels to warrant a little oil.

On top of all of this, there is just no money to be made in rare conditions. There are not enough people to buy curative drugs, now and in the future, to justify the investment and expect a meaningful financial return. But there ARE enough people to buy a drug to slow it's progression. A drug they will have to buy for many years to come, as long as there is no cure and as long as they do not want to submit to The Beast.

Good conspiracy theorist that I am, here is where this is going: There are 300,000 people in the United States (out of 300,000,000+, you do the math; that is why it is considered "rare") diagnosed with MS. Company X manufactures (theoretical) Drug A, which will cure MS and reverse most of the damage and disability caused by plaques, with a course of 2 pills per day for 3 months. Drug A sells on the market for $3105.00 per course. This is a large sum, but those 300,000 MSers want to be cured! They clean the coins out of the sofa, bow and scrape to their insurance carrier, take out a mortgage on their house and kids and dog, whatever it takes to get that money.

$931,500,000 and 3 months later, there is no MS in America. The drug will still sell occasionally with a new diagnosis, but being a rare condition, returns will be limited after the initial wave.**

Company X also manufactures Drug B, a disease-modifying agent. It does not "cure" MS but attempts to slow its progress and limit disability, by an unknown process and with modest effect. Drug B is administered in the form of a daily injection and sells on the market for $64 per injection, in boxes of 30 ($1920.00 per month).

$6,912,000,000 and 1 year later, there are still 300,000 patients with MS.
$13,824,000,000 and 2 years later, there are still 300,000 patients with MS.
$34,560,000,000 and 5 years later, there are still 300,000 patients with MS.
and on... and on... and on...

Laugh all you want and call me a loon, but I believe it is valid in today's greed-driven climate. Who gives a shit about 300,000 people, a small fraction of the population, when trillions of dollars are at stake? For just ONE drug - to treat just ONE disease.

I have been failed by modern medicine. I have stopped my Copaxone injections (which cost $64 a day and have NOT slowed the progression of my disease or limited my disability in any way) and I am taking my own "stuff" regularly. I feel improvements every day. I admit, though, that the biggest part of this has been as a result of my attitude adjustment: I will no longer just "manage" my disease; I will work to defeat it.

To Be Continued.....

*I consider this proclamation as such in that although it is purported by the medical profession that there is no cure for MS, I have found research to the contrary; and in conjunction with my own anecdotal evidence indicating remission and possibly even reversal of damages effected upon my body by plaque formations, I have concluded that this statement is complete and utter bullshit.

**Drug A is fictitious. However, Drug B actually exists and is used by many patients suffering from multiple sclerosis. (HINT: Read between the lines and then read the lines themselves, if you want to know Drug B's real name).