Clinical Trials: The Good and Bad News
Did you know that there are over 50 open investigations into the causes, history, treatment, and progression of ankylosing spondylitis? Here is more good news: many of these studies are seeking volunteers to participate.
Now for the bad news: you likely cannot participate. You’re probably thinking, “Wait! Why not?” The truth is that unless you happen to be in a large metropolitan area, usually on the East or West Coast of the United States, live in Toronto or Quebec, or one of a few European capitals, you have a very low likelihood of being able to participate. Add to that, if your treatment is going well, you likely have to give it up for one that may be a placebo and you begin to understand why clinical trials are gasping for volunteers.
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Hi there, excellent points. I’ve volunteered for a few clinical trials over the years without any take up… I’m now on a double blind one for a drug designed to combat diabetic retinopathy and have been doing it for a year. But yes, I live near a major European city so meet the criteria that way.
Emma, I was able to get in a study to see the impact of a drug (Rezulin?) on the ability to manage type 1 diabetes. Things were going so well until people with type 2 began to increasingly severe liver issues. Rezulin was a type 2 medication and as the cases of liver toxicity increased the company removed it from the marketplace. That abruptly canceled the study. Oh, that crazy liver. I’ve no idea how Indianapolis got that study, but it sure went sideways quickly. I have not found another major research program since.
Great post, Rick! There are also a lot of Catch 22’s in clinical trials as well. For example, most RA patients are >60 years old, but people in that age group are frequently excluded from clinical trials. (Too many comorbidities/medications, etc. that might skew the results along with various ageism biases.) The one time I was offered a clinical trial opportunity, I turned it down. I was on a treatment that was working and didn’t want to give it up. Now that I’m struggling to find a new treatment, I’d love to have that opportunity back.
As we know one big one for RA patients is that we usually have to give up the biologic we are using for a potential placebo. Like you I do not think I would give up a biologic that is working for one that might be a placebo
You can get a lot of free stuff also if you do a trial.
Hello Ivan, Yes sometimes that is true… Rick
The bad news is really bad for those who are ready to try the latest treatments.
Yes I agree John !!!