Finding Reputable Clinical Trials
Tomorrow I go in for the clinical trial- again. Remember my clinical trial is with APL-2. They are trying to reduce the speed at which I am going blind.
Who is my clinical trial with?
My clinical trial is associated with a big pharma company, Apellis. It is also associated with a big name hospital. Not to be a name-dropper, but Wills Eye consistently ranks as second in the nation after Bascom-Palmer in Miami. My initial doctor was Carl Regillo. Dr. Regillo is Chief of Retinal Services at Wills and has published extensively. He has an international reputation and it is pretty damn good. We are talking serious juice.
Finding legit clinical trials
Also, serious credibility. I am going to lecture you all once more on making sure you vet every single clinical trial you look at. Why do you have to vet them? Because clinicaltrials.gov does not! There has been some really questionable stuff on there and it is your responsibility to separate it all out. Clinicaltrials.gov has a disclaimer on their page so they are not responsible if you run afoul of some unscrupulous operation. Not their fault. Why would they do that if they trusted everything they post?
Solid names and locations
To vet a study, I started with reputation and, well, juice. And credibility. I wanted a NAME. I got three. If you have people and organizations with good names to lose you can be better-assured things are on the up and up.
I also looked at multi-site studies. Try to stay away from Dr. Smith doing research out of his basement. If there is only one site, steer clear.
These people will tell you they have found the answer and the bigger guys are closed-minded or afraid of them. They will say mainstream medicine misunderstands them. Yeah, right. The days of the solitary genius working alone in his garage are gone. If they have hit upon “the answer” so have a dozen other people. And they are working for the big guys!
Who pays for my clinical trial?
Tomorrow morning I get picked up by a limo service. Who pays? Apellis pays. And let’s put it this way, what they are paying to get me there and get me home rivals what I, a professional, have ever earned on the best of days.
EVERYTHING associated with this trial comes to me for free. That word was FREE. I pay for nothing. My insurance pays for nothing. Everything that I get is FREE to me. In fact, studies generally pay their study subjects. If you are asked for as little as a quarter to pay the parking meter, question. Clinical trials are experimental and you are the lab rat. Your contribution is participation only.
The cost of standard expenses
Now, two small exceptions to that free business. First, standard expenses may not be paid. What is a standard expense? If you eat lunch every day and get lunch on the way home, they may or may not pick up the tab. Also part of the standard operating procedure business is this: If the clinical trial people do something that you normally get done at your regular doctor - for example an OCT screen twice a year - those may also be charged to your insurance.
Remember these are standard things that you would pay for anyway. If you would not have done it unless you were in the study, you do NOT pay.
The cost of side effects
The second exception is a little murkier. Some companies will not pay to treat a side effect they caused through the study. For example, if I develop wet AMD from this study, Apellis has promised to treat - at least initially - free of charge. This is not legally required. Therefore, your insurance may end up paying.
How long is my clinical trial?
The study I am in is 36 months in length. Every time I go I have a full battery of visual and physical examinations. The purpose is to track data and to prove the treatment has a good effect. Real studies keep you coming back.
One eye, not both
I also have a “study eye.” Every time before I am given the shot, they check my records and also verbally ask me which one is my study eye. I then get a little, white stickie over my left eye. My right eye NEVER gets the treatment. Not only do they want to see if a difference happens between my two eyes but they also do not want to blind me! Experimental treatments are never given to both eyes. Or at least not reputable experimental treatments.
I have gotten into a good, reputable clinical trial but there are plenty of bad ones. Use some sense before you sign up for anything. Check them out well.
How do you protect your eyes from the sun?