I know the Cystic Fibrosis foundation as well as other organizations have funded research and development programs specially aimed at identifying innovative new therapies for CF. As a patient do you believe these programs have added value? Have you been approached to enter a clinical trial for a new therapy?
I definitely believe they do! They have a drug out right now that “fixes” the genetic issue of CF. It reopens the channels across the cell membranes leading to almost normal function. This drug is only for specific mutations but they are working on more for others. This drug can and has helped people live much more normal lives – healthier, able to keep on weight, less to no lung infections. For some, this drug could be the “cure” that people want. But that depends on your definition of cure!!!
I have participated in many trials. Not so much lately because they usually have a 40% FEV1 cutoff and I miss that mark. But in the past I have been involved in a bunch. And actually right now I am in one just where they collect your mucus to examine it once a year, only requirement is culturing Pseudomonas. Even these little studies help the larger picture. I feel that it is my duty as a person with CF to participate in trials that I feel comfortable participating in. There is a small pool of people that can participate so we need all the volunteers we can get to do so. Foundations like the CFF can do research and studies galore in the lab, but if there is no one to test these on then they become moot. I don’t do these trials so much for me, I don’t know how much of them will actual help me in the long run (I did an inhaled Cipro study 7-8 years ago and had great results but since then my lungs have decided to not like inhaled antibiotics so that med will never help me out), but more for future generations.
Even though this is not a CF specific study, I am currently enrolled in a colon cancer research study. Its 6 months of taking a mediation daily to see if it helps ward off colon cancer. Anytime I get asked to do a study I participate (unless it’s a procedure that might put my lungs at risk). The current one I am on I am able to be taken off of if my lung health declines and I need to stop. I am not allowed to take certain types of antibiotics, and of course those are the ones that I usually try in oral form before doing a different kind of IV antibiotic. I also like doing studies because I am such a hodgepodge of diseases that they can see the results on someone like me. I don’t mind being a guinea pig at all!!!