A Cystic Fibrosis “Patient’s” Responsibility – Drug Studies

(Image: nezume_you Rainbow Test Tube/Flickr)

This past Sunday I was watching 60 Minutes with my mom and dad and one of the stories was about a “breakthrough” cancer study. Researchers are trying to use the polio virus to treat a form of brain cancer called glioblastoma. You can see the story for yourself HERE.

The incredible science and story shown on 60 Minutes got me to thinking. They used the phrase “medical explorer” to describe one of the patients going through the unproven phase 1 clinical study, and I thought that was fascinating. I’m not sure I have ever thought of drug study participation through that lens before. There is much more of a human element to clinical research when it’s put that way, rather than “study participant,” which easily translates to a number on a page.

Personally, I have been involved with several drug studies. I am fortunate enough that my CF clinic runs several drug studies each year, so it certainly is something that is very available to me. Since 2013, I have been involved with two separate studies alone. I’m not going to share which studies I have taken part in, but I can say that it has been a pretty wild experience. An experience that I think, if given the opportunity, is my responsibility to take.

Why do I think it is without a doubt a responsibility for me to take part in a drug study?

There were thousands of people with CF who came before me. They never had the opportunity to benefit from these advanced medications. I feel like I honor those people and their strength each and every time I sign my name on the dotted line consenting to take part in a three month, one year or two year drug trial. It is no secret that I am living with something inside me that causes great pain, sadness and death. You don’t have to tell me what may or may not happen to me based on the statistics and probabilities that come with CF. I know that history is the greatest predictor of the future, but I also know that history is being written as I write this very blog, and it is being written at a pace unlike that of any other time period during mankind’s existence.

Uncertainty is at the heart of every drug trial, the pay definitely isn’t great and, to be honest, a lot of the requirements and visits for these studies are a serious pain in the ass, but it’s hard for me as a “patient” to pass up these opportunities. The chance to take part in evolving science is unlike any other prospect in the world. Am I a “medical explorer”? No, I don’t think so. I think I am just doing my part to bring an end to a disease. Perhaps the investigational pills I am taking won’t work, or perhaps they will – I’m not a scientist. I know that there is a chance these drug studies may very well not have an impact on my life in the slightest. There is that chance.

I also know, however, that my participation in clinical trials is a piece of a larger puzzle that will help create an answer for the brilliant minds trying so very hard to cure cystic fibrosis. My results will tell the people studying my blinded numbers on a piece of paper to continue with their theory or start from scratch. That, at least, is an answer the researchers would not have without patient participation.

Am I a “study participant” or am I a “medical explorer” to the people studying my results? Am I a number on a page or am I a human being ingesting an unproven molecule designed to fight nature’s very own weakness? I’m not sure, but I can tell you this: I am not going to cure cystic fibrosis. I personally will not be there in the lab the moment a pair of eyes suddenly get wider than the Grand Canyon followed by the words, “holy shit.” Some group of brilliant people, maybe today, tomorrow next month, next year or in ten years will be the ones to cure cystic fibrosis, and I, along with every other patient and family going through clinical trials will have done our part to turn that dream into reality.