Pay clinical trials? 70% negative polling

pay to play clinical trial

We’ve heard of payphones, pay toilets, and other services for which people have to pay for access, but what about pay clinical trials?

In a pay clinical trial, patients have to pay anywhere from $10K to over $100K to get in the door.

I asked readers of this blog about how they feel about patients having to pay those running clinical trials just to get into the trials of experimental therapies.

In that poll, 70% of the more than 120 responses felt negatively about these so-called “pay-to-play” trials. The most common answer was “very negative”.

Only 19% were positive about such trials.

While such polls are not scientific, they are interesting and can bring general snapshots of opinions.

The reason I did this poll is that both stem cell clinics and even some academic stem cell researchers (see the Bipartisan Policy Center (BPC) report and my reaction to it) are breaking with decades of precedent to advocate for a greater acceptance of the practice of charging patients for access to experimental therapies. Traditionally if there has been any exchange of money related to a clinical trial it is the trial that pays the patient for taking on the risk.

Both the BPC report and the proposed REGROW Act also are pushing for weakened FDA regulation of stem cells, which would likely put patients are further risk.

We are seeing an unprecedented dynamic emerging in the past 6 months in the U.S. of tension between those advocating for strongly reduced regulation of the clinical stem cell arena with substantially decreased FDA oversight versus those advocating instead for a more cautious approach to oversight and more measured FDA reform. You can probably guess that I am on the latter side.

It will interesting to see how this develops.

2 thoughts on “Pay clinical trials? 70% negative polling”

  1. The treatments are not defined they are in experimental status. Desperate people maybe be willing to be experimented upon and pay for it. The regulators are expected to protect the public in this country, the USA. If they are reluctant to approve something there should be at least one question unanswered.
    An example being the regulators are holding up the Ocata trials where the early RPE results appeared to be good and the limit of risk seemed to be that legally blind people might loose more capacity in the treated eye. Oversight is prudent even in end organ treatments. Do the regulators need to spell out all the questions or the investigators need to answer them all through trial?
    Ocata did a trial once in which differentiated stem cells were injected in the tail of the mouse and those cells migrated to the compromised site in the mouse to start repair. How much do they understand now?

  2. I have seen situations where a COMPANY runs a IND clinical trial and pays the outside doctor or the outside doctors bills the patient but there are two important issue here
    1. The Doctor is the Company so no billing of patient should be allowed
    2. There is only an IRB and NOT an IND

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