What if some legit place like The Mayo Clinic charged people just for the opportunity to talk to a doctor about possibly enrolling in a clinical trial?
Imagine this kind of conversation.
“Hey, Doc, I have this medical problem and heard you have a relevant clinical trial. Tell me about it.” Then the doctor fills them in and later sends them a big bill just for that conversation?
Does that seem far-fetched?
Unproven stem cell clinics charge people just to be in clinical trials. Or what they pass off as supposed trials.
Imagine if these clinics charged potential customers just to even talk about the possibility of them becoming participants?
I would criticize them for that. But what about a place like Mayo?
Mayo Clinic case
It turns out that this highly questionable approach could be a new monetary brainstorm from the Mayo or just a one-time aberration. I hope it was a fluke.
A new piece by Carol Levine and Art Caplan over at The Hastings Center discussed this odd situation that Axios brought to light.
I love how Levine and Caplan start their article with an analogy to clothes shopping:
As in-person shopping returns, imagine that you enter a clothing store to refresh your wardrobe. You pick out several shirts and two jackets to try on. The helpful salesperson brings you several more, pointing out their special features. After spending a half hour in the store, you don’t purchase anything. When you leave the store, you are handed a $300 bill for the salesperson’s time and the store’s expense in restocking the garments. This is a joke, right?
They then give a real-world example of a patient, John Mathna, reportedly being charged by the Mayo Clinic for just talking with a physician about the possibility of enrolling in a clinical trial. According to Mathna, he also had not been told that he would be charged:
Imagine his surprise when he got a bill for $476 from the Mayo Clinic. And a further surprise when Cigna, his insurer, reviewed the bill and said that the consultation was out-of-network and not covered at all. Mathna says that he submitted personal and insurance information before the call but was never advised that he would be billed for anything. This was, after all, not a call about treatment or care but about participating in a clinical trial. He was being charged for the investigator’s time in seeking to recruit him to a study.
This doesn’t seem like a good idea.
Clinical trial recruitment
I don’t run clinical trials myself, but I’ve had the opportunity to learn a lot about them from the people that do. I even hope someday that my research could lead to a trial.
In any case, one of the challenges for clinical trial researchers is getting enough people to enroll. In some cases, especially in the past, sponsors might even pay people to be in trials. For instance, I had friends in college who would pick up a few hundred hard-earned bucks by being in research studies.
Recruitment of trial participants can be that hard a job.
After all, trial participants are putting themselves at potential risk, often with little chance of a health benefit. They are giving of their time and themselves to help research and possibly benefit other patients in the future.
So the upside down idea of charging people who might enroll in a trial just for the chance to learn more about that clinical research seem misguided to me.
Circling back to the world of stem cell clinics, it really seems like the kind of thing they might do. “Want the chance to learn how stem cells could treat your (fill in the blank with your condition)? Pay us $500 to learn about this amazing opportunity.”
Paying to be a research subject
Maybe, as Levine and Caplan speculate, this one situation with the Mayo was just an anomaly. If not, I hope the Mayo Clinic will rethink this charging plan and drop it.
If this idea of patients paying even to just talk about trials becomes more common I think it’s going to make it much harder for some clinical trials to get enough people enrolled. That could make a dent in getting sufficiently powered clinical trials.
If you don’t get enough participants then your trial is going to be weaker.
More broadly, one reason this Mayo story resonated so strongly with me is that it could fit with the possibly growing trend of patients having to pay to be research subjects.
Even some universities have been charging for expanded access program participation. For instance, Duke’s cord blood program has been charging around $15,000 for infusions of unproven cord cells for kids. It seems the plan is to expand some extension of this program to make millions in revenue.
Could someone start charging people just to talk about the idea of being in a compassionate use program?
I hope not.
In my view this all also ties back with the idea of therapeutic misconception too, where experimental offerings are confused with proven treatments.
Overall, I don’t believe it’s fair for patients to be charged to be in some kind of trial or expanded access program so the possibility of charging people just to talk about a trial seems like an awful idea.
7 thoughts on “Mayo Clinic charges patients just to talk about clinical trials?”
Wondering if it was a simple misunderstanding between patient and clinician? The doctor considered it a consultation and the patient considered it a simple inquiry about a trial. That makes the most sense. I read the Axios article and learned the patient was refunded the charge. I would be surprised if it was, as you speculated, a possible “new monetary brainstorm from the Mayo.” Really? Keep us posted if you find out more.
I think the FDA should be able to take care of this problem through regulation. Write the FDA director today. The practice is abhorrent and preys on desperate patients. Patient advocate groups should take this on.
So was the selection of subjects equitable? This is a requirement for IRB approval. What happens to subjects who did have Li You’s insurance or had difficulty paying deductibles?
My first year on the trial, I was on a zero deductible plan and didn’t notice the visit charges (that was my bad, but also an indictment of the 3rd party payer system.) I was given a lot of paperwork at the beginning of the trial which I looked through, and do not recall seeing anything specific about charges to me, although, I recall my provider saying something like MOST of the charges will be picked up by the pharma company. So, I don’t think one could say that anybody was being fraudulent. [Incidentally, the small pharma company was acquired for 1.9 billion dollars 5 days after FDA approval. Those who wish to buy the pills now can do so to the tune of $15000/mo. (Glad I could help…) I have been off the drug for over 6 mos, and have not noticed any difference in my health from when I was on it.]
“This doesn’t seem like a good idea.” You’re a master of understatement.
I think nowadays providers just consider any face time chargeable. I recently left a clinical drug trial I was in for two years once it became FDA approved. The drugmaker, presumably, picked up the hospital charges for monthly testing and blood draws, but I was charged a level 5 office visit for ~ 12 minutes of the specialist’s time to check on my health. each month during the trial. The negotiated rate was paid out of my pocket until my deductible was met.
Thanks for your comment.
How’d you feel about the monthly charge you paid related to the trial? Was this some kind of disclosure prior to the start of your participation in the trial about your having to pay something?