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Clinical Trial Participants Speak Out

Emily Schaller, Trenton, Michigan
Retail Associate and Founder of Rock CF Foundation

Emily Schaller, Trenton, Michigan

I was diagnosed with CF at 18 months of age and now, nearly 25 years later, I'm doing great.  I think this is due, at least in some part, to my ongoing participation in clinical trials.  I participated in the TOBI® clinical trial when I was 12.  During the study, I was closely monitored over a three-year period, which was a great experience for me.  I was excited about the extra medical attention, and seeing positive results from the drug was exhilarating.  When that trial ended, I knew I wanted to participate in others.

As I got older, I discovered that I'm allergic to several medications and often end up with hives.  However, my drug allergies have never prevented me from wanting to participate in clinical trials.  I know that the doctors and researchers are very thorough and that even with my allergies, I will be closely monitored and safe.  Even if I do end up with hives, it's worth it to me to be a part of the clinical trial process.

Recently, I participated in the Vertex clinical trial of VX-770.  Although this trial was much more involved than others I had done — I had to make frequent trips to the clinic and there were extra hospital stays — it was more exciting because it was addressing the cause of my disease, not just treating the symptoms.  When the results from this study were released and the CF community responded with such excitement and hope, I was proud to have been a part of it. 

did you know?

The Foundation awards more than $100,000 annually to each care center in its Therapeutics Development Network to develop and conduct clinical trials involving new CF drugs.

In my opinion, one of the greatest benefits to participating in trials is having early access to cutting-edge drugs.  I truly believe that clinical access and increased care center staff attention have positively contributed to my overall health.

My philosophy on clinical trials is that it can't hurt me to participate, so I have no reason not to. For me, it is amazing to be a part of something that can change so many lives. Now that there are so many new treatments in development, participating in clinical trials is more important than ever. The only way to get these medications to the people who really need them is by participating in trials.  I am committed to making that happen.

Brian Valiant White, Olympia, Washington

Brian Valiant White, Olympia, Washington

I was diagnosed with CF when I was 4 months old and two days after that, I started participating in clinical trials. Over the years, I have participated in at least a half a dozen studies.  The reason that I participate in clinical trials is to help with the development of new medicines and therapies that could be beneficial to the CF community.  One distinct advantage of participating in clinical trials is getting early access to medicine that could potentially make me better.  

I definitely feel safe when I'm participating in clinical trials.  I feel it's important to participate in clinical trials because these studies help to develop new ways to treat CF.  Ideally, I believe that all people should participate in clinical trials, although I don't think participation should be forced.  Based on my experience, people who participate in a clinical trial can expect pulmonary function tests and blood draws.  They can also expect to spend more time with clinic staff or research nurses, and make more visits to the clinic.  Best of all, people who participate in studies can expect to feel good, knowing they're doing something to help out the CF community.  I plan to continue to participate in clinical trials.