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.
Do not despair
It is true that while it is unlikely you will be able to participate, you can actively monitor open trials and watch their progression from one phase to another using several simple free online tools. Even if you cannot participate, it is fun to see what is being researched and by who. You may ask where you find the information about clinical trials? I always consult two places.
Where to look
The first and most useful, in my opinion, is ClinicalTrials.gov. This is the trusted source for the majority of clinical trials in the United States. This site is helpful because you can search by condition, gender, age, recruiting vs. not recruiting, location, and in some cases, links to results.
Remember, if you check it out the trials listed on ClinicalTrials.gov you will not see the full menu of possible trials because not all clinical trials require National Institute of Health (NIH) registration. But the upside is that clinical trials listed on the NIH website are not simply someone’s good idea. The study sponsors have to be very serious about getting them listed on this web site.
To get a fuller menu of clinical trials, I use Center Watch. Center Watch is a private organization that is an aggregator for companies and researchers that are doing work in multiple disease areas. They get paid to advertise and direct participants to clinical trials. This type of business exists (there are a few of these) because of the severe shortage of clinical trial participants. If you register for proactive notifications of new trials, your information is retained by a private company. However, if you want to look at the tests you can send a question about enrollment to the study sponsors without registration.
The dream for a miracle cure
Do you ever have that dream? You know the one where science works it all out, and you are blessed with the miracle cure. The one where you are given the magic medication or treatment, and everything is better. Most people who have a chronic illness have that dream at some point. It is unlikely that any of us will find that miracle cure in any clinical trial. It usually does not work that way.
I do have a friend whose options had run out for treatment and she entered a clinical trial for an investigational medication that worked. She was not cured, but when nothing else worked, this medication did work. After the trial, she petitioned the FDA, NIH and the manufacturer to remain on that medication under a hardship provision. She was granted that waiver and stayed on the medication until an official decision was made about where to place the medication in the marketplace.
It does happen occassionally
The FDA later approved that medication, and it is currently on the market. By happenstance, she did find her miracle. So yes, it does happen. Not very often and I would never enter a clinical trial thinking that miracle might happen, but it does happen occasionally.
So why do I like to join clinical trials? I do it for the potential benefit of the community, and I have to admit I like the compensation. I never earn much, but $100 or so for an hour of work is incentive enough for me. I call it the retired guy financial subsistence plan. Heck, I made maybe $200 last year. That is enough to buy a Christmas present or two. Every little bit helps.
Have you ever participated in a clinical trial? Would you give up your current medication plan to try something entirely new and that may be a placebo?
Do you use the word disability to describe your AS?