When you get right down to it, most of us don't knowingly take chances with our lives.

Matt Koenig

Oh sure, we drive our cars and fly in planes (even after 9/11) without giving too much thought to the probability of serious harm. The thrill-seekers amongst us will subject themselves to bigger risks just for the fun of it. But me? I'm an engineer! My idea of a big risk is a dollar-ante poker game. So what would possess me to be the first to try out a new drug for pemphigus that had never been tested before? One that by design, could specifically provoke a massive immune reaction within my bloodstream that could conceivably kill me, either in seconds, or more imaginatively in painstaking, blood curdling days!

One thing about engineers is that they need to have more than one reason to do anything. In fact, they usually like about a half-dozen good reasons to become enthusiastic about a course of action, along with a few reasons not to do it, because that proves that they are considering all the potential outcomes. I had known about the Peptimmune's work for years, and had met with Jim Rasmussen to discuss the theory behind immune therapy. I knew that he took his work seriously and that his ideas were shared by other leading pioneers in the field. I was also one of the blood donors for the initial rounds of research, so I felt that I had a stake in the results. After all, if it was going to work at all, wouldn't it have a better chance of success if it was based in part on my own blood?

There was something appealing about the idea that you can overload the body's immune detection system with a particular protein trigger to the point where it gives up trying to respond to that trigger. Science fiction fans can probably remember several television and movie plots where the monster was killed by feeding it too much of whatever (energy, people, pasta) it needed. In a closer plain of reality, there is evidence of tolerizing for substances that cause allergies by using the substances themselves in various dosage levels.

So when the call went out for volunteers, I already had 12 years of pemphigus and prednisone to think about, along with a bout of osteopenia and some high blood pressure to go along with it. But my symptoms have always been mild, and the required level of medication was low. There was no physical incentive for me to change my ways. On the other hand and with my engineering knowledge of entropy, I knew that things could, and usually do get worse.

So, decision time, had come, and it was time to review the options:

Why do it?

1. Escape from PV hell! It might actually work! That's a pretty strong reason, considering that nothing else had worked to place me into remission up to now.

2. Ego! That's actually more of an inducement than you would think. I would be the first to try a brand new type of therapy for an immune disorder that if it worked, could conceivably be extended to save millions of people who suffer from immune disorders. I could be famous! How often to any of us get a chance to be "first" in anything? Out select group already had the special opportunity to be first in the neighborhood (or even small city) to get pemphigus - why not go for a second opportunity?

3. Guilt! Recognizing the potential value of the treatment, and as leader of the NY group and an active participant in the list-serve, I would be encouraging others to try the therapy. Where would my credibility be if I did not first try it myself?

Reason not to do it! It could kill me, easily. The term "anaphylactic shock" describes the body's massive allergic response to a substance that it cannot tolerate. We've all heard stories about people who were allergic to peanuts, and went into convulsions or even died after ingesting just a small amount of the stuff. How much worse could it be if the offending substance was injected directly into the bloodstream?

So there you go - 3 reasons to do it, 1 big reason no to do it. Now we're up to the mitigating factors, which is "engineer speak" for hemming and hawing about the decision by incorporating as much reality into the choice as possible. There is a fate worse than death, and that is permanent incapacitation, with or without pain, so the best strategy is to be prepared for any eventuality. In my case, I checked with my health and life insurance companies, asking what they would do for me in the event that I died or worse. Their responses were oddly reassuring. Life insurance would pay up in the event of death, even if caused by the drug. Medical insurance would pay for all treatments short of death as well. Their assurance came down to this happy quote: The laws have changed. You could walk into the Lion's cage at the zoo, get all torn up, and we would still have to pay up! So at least I had a safety net!

Now, the worst thing you can do is to ask people for free advice (you pay consultants to do that). Of course, I asked my doctor about it. They have to tell you the truth, and can't speculate too far beyond that. His advice was, "It's never been tested on people before. You'll be the first, and it could really kill you!" That's what you call throwing down the gauntlet. Sometimes we just love to prove our doctors wrong. Reason number 4 to go ahead.