Daily Archives: February 26, 2019


Just another way in which I am between a rock and a hard place. I need pharma. Obviously, they have also needed me. Or, at least, someone else with a similar genetic profile and the balls to join first in human trials.

My relationship with pharmaceutical companies has been mutually beneficial. I am alive. And all three drugs which I have been in trial for have gone on to receive FDA approval. Time, energy and money well spent, all the way around.

However, as I’ve said before, (Don’t call me partner) this little romance between pharma and myself has not been one of parity.

Nope. One of us has gotten fabulously wealthy while the other–that would be me–has struggled mightily. Those new tires? They did in fact max out my credit card, a fact I discovered halfway through doing my laundry when my card was declined.

I am still–unbelievably–paying for my own parking each time I fulfill my end of the trial bargain. Ten years and counting.

The NYT’s would like you to know that we all bear the burden of high drug prices. Hear, hear I say. However it is the participants in clinical trials who bear the greatest burden. Yes, it has been our poor fortune to come down with diseases for which conventional therapies are no longer adequate, making us reliant upon experimental therapies. However, not only do we take on exceptional risk when we enter first in human trials, we also assume greater financial burden. We are paying for the privilege of being a guinea pig. Something only a truly desperate person would do.

I am a big fan of medical research. But I also believe that the primary motivation should be to address human suffering. However, as pharmaceutical companies are a for-profit industry, that motivation is always going to be muddied. Because at the end of the day, it’s not just drugs but money that’s being made here. And that, my friends, is fucked up.