clinical-trialsThe other evening, Esther and I had a chat with a friend who is a leading researcher in a neuroscience field. I started asking him about the business side of trials and the relationship between sponsors (usually drug companies), investigators (prominent physicians) and patients. There are some behind-the-scenes issues that are important for you to think about when and if you consider participating in a clinical trial. Note: I am a big fan of patients considering trials as I believe the two that I have participated in have greatly lengthened my life.

Okay, let’s get into the nitty gritty: No one can market a new drug unless it has been proven to be safe and effective. And while a lot of basic science happens first and then experimentation on animals, ultimately there must be trials with real people. As you know, these are in stages, very costly, and take years to complete with approval.

So how does it get done? First, the drug company needs to nail down the details of the trial and have agreements with the clinics, hospitals and doctors who are involved. That includes agreeing to pay them for each patient who is enrolled in the trial.

Now you, the patient, need to think about this. IF a doctor has an incentive for you to be in a trial, can you be sure that’s the right option for you? And IF hospital A has one trial for your illness, will they tell you about another trial that is at hospital B? And IF your doctor has multiple trials going on, you need to probe them to see why they may be recommending one trial over another.

None of this is to make you distrust your doctor or to stay away from trials just because the doctor, hospital and clinic get paid as patients participate. There’s a lot of time, paperwork and monitoring tied up in trials. I just want you to understand the business side of things and to ask smart questions that go beyond a specific trial or a specific treatment center.

Again, I am a big proponent of you at least considering being in a trial. Along with myself, I know many cancer patients who wouldn’t be here or not living well if they not found the right one for their situation. And that happened because they connected with the right doctor. So please keep including trials in your thinking about treatment. And, as you know, we now have trial finder tools in myeloma, CLL and MPNs to help you. More will be coming.

We patients are in this together with government scientists, drug companies, clinical investigators and a wide variety of doctors to move science forward to help us be cured and/or live better. Like with everything else, transparency is best.

I welcome your comments.

Wishing you the best of health!