April 10, 2013

"Fail First"...What a Really Bad Idea!

 The notion that persons with epilepsy should be asked to "fail first" is ludicrous. Since finding a drug or combination of drugs that will control our seizures is, in essence, already a "fail first, then second, then third" proposition. To ask us to give up seizure control just to save a few dollars is a dangerous idea.

      Yet, insurers are pushing hard to get lawmakers to invest in the notion that it only makes financial sense. After all, our drugs are really expensive. Some of the older ones are cheaper, but the newer ones are just really costly. I have already taken and tried nearly all of the drugs for anti-seizures that are out there. I am unwilling to go back and begin again. They were crap, gave me terrible side effects, and most importantly did nothing to control my activity.

      I have been quite well controlled on the meds I currently take. They do a good job suppressing tonic clonic activity. While they may not work the same for each of us, they work for me! I currently take Carbatrol and Lamictal, brand names only for each. I tried the generics and there was poor control, so I am taking the brand names for each of these and having great success.

       Some folks are under the impression that epilepsy, as the 4th most common neurological condition in the nation, is not terribly serious. More of an unpleasant condition, but nothing one could die from. So, if it isn't "life threatening", what could be the harm? Eventually, one would get to the right medication(s), surely. And, while the epileptic is searching through the formulary for a drug that will work, he or she is still having seizures.

       I am reminded of a friend, who, on his diagnosis of epilepsy, began the search for a good drug. Unfortunately, he never got the chance to find one. Out shopping at a local mall, he began to feel odd, so he went to the men's room. He was overcome by a seizure, collapsed in the stall and died on the floor, alone.

      Yes, we can and do die from epilepsy. Seizures are dangerous. It doesn't take many of them to be lethal. "Fail first" looks to me like "wrongful death". The fools in Washington State, Maryland and other places should hear from us all, with gusto, warning them against the dangers of this foray into financial frugality. Telephone, email, snail mail letters of complaint. Send them this post if you like... They must not do this!


Paula Apodaca said...

I liked your column on the idea of having to try drugs to find the least expensive ones.  It took us decades to find drugs that have worked as well as yours do and they still aren't perfect.  It would be madness to go backwards in time and have to suffer all of those bad effects again.  The article could improve by identifying more clearly who is making the proposal and how folks could react against it.  It is an important point you are making that can get drowned out by the seeming common sense of the proposal.  There is an error in the logic of the proposal that is actually quite fundamental. .

If we propose to improve health to cost ratios, we can't sacrifice health.  We are supposed to be improving the health obtained from the cost.  By resorting to drugs that lessen health, we increase other types of health expenses like missing time from work or needing emergency treatment or risking costly permanent injury.

Any drug company will explain their major expense is the development of the drug through experimentation.  Experimenting with drugs is costly for companies or individuals.  Once the experimentation is over, then production can begin and the costs go way down and the profits go way up.  Having the citizenry and medial industry enter into new rounds of experiments with drugs will be inherently costly.  A couple of visits to the emergency room will wipe out whatever monthly savings were achieved with a cheaper but less effective drug.  The overall effect to the economy will be to risk large increases in health care.  Besides the human misery, it will likely cost more than using drugs that have already passed through the experimental phase (in this case the experiment is between the doctor and patient as they find affective drugs).  The plain truth is experimentation at any level is more costly than production and consumption.

Good work.  I am always proud of you and your voice.

Lyra said...
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