September 25, 2020

The Niche

Knoepfler lab stem cell blog

Call to patients: let’s advocate together for stem cell clinic publishing

In this post I propose that researchers and patients advocate together to pressure the stem cell clinic industry to collect and publish such data.

Why do I make such a proposal?

Figure 1 Turner Knoepfler Stem Cell Clinics, Patient advocacy, stem cell clinic industry
Figure 1 Turner Knoepfler Stem Cell Clinics.

Many thousands of patients have bought stem cell interventions from non-compliant stem cell clinics. Thousands of others are considering doing so. You can see a map at right of all the stem cell clinics advertising in the US as of 2016.

Many in both groups contact me on a regular basis.

These patients are looking for hope and information. Quite a few feel that even today’s “modern” medicine has little left to offer them.

Sometimes patients in that kind of situation have expressed frustration to me over my advocacy for a relatively high degree (“high” in their opinion, “appropriate level” in mine) of regulatory oversight over stem cell treatments here in the US.

I don’t claim to speak for them by any means, but my sense is that they feel that such regulatory oversight interferes with their ability to freely get stem cell interventions that at least have a chance from their view of being helpful whereas other forms of medicine have not worked for them.

Some are frustrated or even angry, often times with me. Many others are quite appreciative that I take the time out of my crazy schedule to interact with them and tell them my perspective.

More broadly, how can we work together even more often instead of butting heads?

One area of common ground between patients and stem cell researchers such as myself is in the area of stem cell clinic publishing.

Stem cell clinics see a lot of patients and as such could be collecting a large amount of data on how patients who have received transplants of stem cells are doing.

They should absolutely also be publishing that data and putting it into Clinicaltrials.gov if possible.

I propose that researchers and patients advocate together as a team to exert pressure on clinics to collect and publish such data.

There is absolutely no legitimate reason for such clinics to be not publishing their data. Yet, they almost never do it. That is wrong.

It seems to me that this is one area that patients and academics can agree on.

The benefits of clinics publishing their data on stem cell patients are numerous including in essence validating the patients’ experiences as real and meaningful, getting valuable information out there on the treatments themselves that could be helpful to the clinical field more generally,  and advancing the biomedical science.

Publishing would also give more credibility to the clinic and make it more legit.

Clinics are nonetheless choosing not to do this almost 100% of the time.

If even some of the treatments are safe and actually do work as so many people are claiming, publishing data on them will help everyone.

When I talked to Arnold Caplan earlier this year (see all 4 fascinating parts here), he told me that one of his great frustrations is that the stem cell clinics just do not publish their data. He said that needs to change.

Let’s work together to change the clinic leaders’ minds by pressuring them to publish.

What could possibly be the downside to this for patients and the field?

I don’t see one. It’s a win-win idea.

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