August 3, 2020

The Niche

Knoepfler lab stem cell blog

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.

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