Sorry for the long silence. Not only have I been quite busy, but I haven't felt like I had anything to say on my blog for some time. Today, however... oh, do I have something to say...
For quite some time, I have taken a rather unconventional medication for attention deficit disorder, phenytoin. Typically prescribed for epilepsy, it has been helpful in the past to help me deal with ADD symptoms, but recently it has become gradually less effective. While upping the dosage might work, I wanted to find out if there was something out there that might work better.
My doctor had me try a couple of different medications, one of which did nothing for me and the other of which was no better than the phenytoin, and both were significantly more expensive. Then he wanted to do a blood test to ensure that bumping up the dosage wouldn't result in toxic levels of phenytoin in my blood. While waiting for the results, he wanted me to try one more medication. This one, called modafinil, is typically used for narcolepsy and other similar conditions, but it is used off-label as a treatment for ADD.
Usually, from my perspective, ADD medication has little noticeable effect to me, because I'm on the “inside.” My perceptions come from my brain, which is the thing being regulated, so even if there is a significant change, I may not notice much of a difference. I generally have to rely on my wife to tell me whether a medication is effective or not. Not so with the modafinil. The sample I received did remarkable things for me: I felt more alert, more aware, and more “present” than I can ever remember feeling before. If it was that much of a difference for me, you can imagine what an improvement my wife saw.
As you might imagine, I was all over this modafinil stuff, but there was a stumbling block. First of all, it's still under patent by Cephalon, Inc., marketed under the name Provigil. Provigil is quite expensive, and my insurance company refuses to cover it. Generic modafinil will not be available until at least April 2012.
Cephalon, faced with the prospect of the bottom dropping out of the market for Provigil when the patent expires, is resorting to a business tactic that could be considered pretty clever, although I'd prefer to use the term “scummy.” They raised the price of Provigil by 74% over four years, then came out with a newer, longer-acting version of the drug called Nuvigil. Nuvigil is still expensive (enough that my insurance company doesn't want to cover it, either), but it is more reasonably priced than Provigil, despite the fact that it is supposedly a superior drug. This will motivate patients to move to Nuvigil, which is covered by a patent that lasts until 2023 instead of only 2012. (Incidentally, the same company was obliged to pay a $425 million federal settlement for marketing their products in an illegal fashion.) EDIT: FallenAttorney mentions an even scummier tactic by Cephalon to wring more money out of Provigil; see his comment below. I had read about it before but had forgotten to mention it here.
Anyway, so I go back to my doctor and tell him that modafinil is unfortunately off the table. Since the phenytoin blood levels came back fine, I presumed that he would simply up my phenytoin dosage. However, he told me that the didn't want to do that because he felt that the risk of side effects was too great. My beef with this is not that he was unwilling to increase the dosage. If a doctor says it's unsafe, then I don't want to do it. What annoys me is that he charged me and my insurance for a test to see if it was safe to increase the dosage for a medication, when he had no intention of increasing it. If he felt that it was unsafe, he should have told me that up front and skipped the blood test. In the end, I'm back where I started, taking the same medication I was before, except that I'm several co-pays poorer.
So I know that there is a medication that can make a big difference in my life, but I can't afford to get it out of pocket and my insurance won't cover it. (I could probably afford it if I fired my insurance company, but that brings up a whole separate set of problems.) I have a doctor who I feel does not have my best interests at heart. All things medical are really grating my cheese these days.
While my hands are tied with regards to the insurance industry or Cephalon, there is one thing I can do: Doctor, you're fired.
Good for you! Your Doctor wasn't the best in the field apparently. My problem is the best doctors I find tend to take care of Kids. Anyway you might want to talk to your insurance company and see if they are willing to compromise and cover part of the cost while you cover the other part. It still might be expensive but worth a shot. Plus I know a lawyer who would like to tell your insurance company what to put their ideas of what should be covered.
Two things about Provigil:
1. Contrary to popular belief, the patent for Provigil HAS already run outin 2009. What Provigil's maker, Cephalon, did is even more scummy. Simply put, Cephalon rounded up the 4-5 generic drug makers which already had FDA approval to start making generic Provigil,aka modafinil, filed a spurious lawsuit against the generic makers, and "settled" the case by paying about half a BILLION dollars to the FDA-approved generic modafinil makers if they all agreed to NOT manufacture modafinil! So, although the drug is still entitled to be called Provigil still, Provigil is actually ITSELF a generic since Cephalon bought rights to make the generic from the generic drug makers. You may be thinking, well some other generic company can make modafinil instead - wrong! Several years ago Congress enacted law which required the FDA to permit only a certain few companies to begin making generics immediately after a brand name drug's patent expires. Since Cephalon paid off every generic company which had permission to manufacture generic Provigil,no one else can and Provigil continues to have a monopoly even without a valid patent. Cephalon's plan that you mention could only work if they paid off the generic companies, which they did.
2) According to the FDA and Cephalon's own testing, anyone who takes Provigil has a 1/200 chance, DURING THE FIRST TWO WEEKS TO TWO MONTHs of use, of developing 'Delayed Drug Hypersensitivity Syndrome', which at best causes a spreading skin rash equal in tissue destruction to 3rd degree burns - SJS Syndrome, and at the worse level causes multi-organ failure,(D.R.E.S.S. Syndrome) which can result in death in less than 24 hours. I know - I developed DRESS syndrome which, while not identified as such at the ER, was treated immediately by putting me on complete life support (mechanical ventilation, feeding tube, drug-induced coma) for 5 days. I lived, but with a badly damaged heart, kidneys, other organs and most obviously brain -- all due to hypotension which turned into anaphylactic/cardiogenic shock and left all my organs without oxygeh like a drowning victim or miners trapped in cave. I'm alive - not much more.
@FallenAttorney: Actually, now that you mention it, I had read about the Provigil patent incident but forgot about it when I wrote this post. I should probably update it to reflect that. I'm sorry that your reaction to the medication was so severe.
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