Lacks opposing viewpoints – Patients seek stem-cell ‘miracle,’ but scientists warn of dangers

Biased Journalism Category: ARTICLES THAT LACK VETTING OF SOURCES AND/OR OPPOSING VIEWPOINTS

Media item: Patients seek stem-cell ‘miracle,’ but scientists warn of dangers
January 3, 2013|By Marcia Heroux Pounds, Staff Writer
Publisheed by: Sun Sentinel
Author: Marcia Heroux Pounds, Staff Writer, on January 03, 2013

On Jan 9, 2013 the following letter was sent to Marcia Heroux Pounds, who replied expressing an interest in interviewing me. I have not heard from her since, but still invite a response to this critique, which will be posted here.

Dear Marcia Heroux,

Our group, Patients For Stem Cells, represents patients who have been denied access to our own stem cells because the FDA has regulated our cells as drugs. We oppose this decision and believe it is a violation of our basic rights. Your article, “Patients seek stem-cell ‘miracle,’ but scientists warn of dangers”, reads as propaganda spun by vested commercial interests that regrettably hurts more patients than it helps.

Your article is also lacking information concerning the financial conflicts of interest that the quoted experts have. If stem cell treatment becomes a routine procedure done by a physician, then billions of dollars could be lost by those that hold patents.

George Daley for instance holds the following patents:

-Creating Embryonic Stem Cells for Mass production-PCT/US2007/019935
-Method for Enhancing Proliferation of Stem Cells-PCT/US03/29185
-Proprietary Kit to see if an iPS Cell is Correctly Manufactured-PCT/US09/57849
-Method to Create iPSC’s (artificial stem cells)-PCT/US08/12532

You also should check the questionable background of Doug Sipp, another “expert” you quote. Mr. Sipp holds a four year English degree from Rutgers and has held odd jobs like trucking supervisor, consultant, software independent contractor, translator, and marketing manage, which was his position with Nature. He specifically holds no degrees in science or bioethics. Currently Mr. Sipp is an employee of the Riken Research Institute. At industry events where he participates, Mr. Sipp makes it clear that he heads up the Science Policy and Ethics Studies Unit of Riken. Sipp positions himself within his “Stem Cell Treatment Monitor” blog as “independent of my affiliation to any organization”, even though he is an employee of the Riken.

We know that you take your job seriously and that clinics do exist that exploit patients. Having said that, we also know that writing stories without adequate balance doesn’t support the ideal of objective journalism. Please take a moment to respond to our concerns in writing. Your response as well as this letter will be posted on our web-site, https://patientsforstemcells.org.

If you are interested in stories about patients that have benefited from stem cell therapy, we would be happy to make introductions.

Regards,

Alberto Salazar
Member, Patients For Stem Cells

Gives patients a voice – Stem Cell Showdown: Celltex vs. the FDA

businessweek
Balanced Journalism Category: ARTICLES THAT INCLUDE OPPOSING VIEWPOINTS
Media item: Stem Cell Showdown: Celltex vs. the FDA
Published by: Bloomberg BusinessWeek
Author: Susan Berfield on January 03, 2013

Jan 11, 2012 the following letter was sent to Susan Berfield, who replied with the response we invited, which is posted below our comments. This is the type of exchange we were hoping for with the media.

Dear Susan,
Thank you for your article “Stem Cell Showdown: Celltex vs. the FDA”. Several members of our group, Patients For Stem Cells, were interviewed in your article.
Our group represents patients who have been denied access to our own stem cells because the FDA has regulated our cells as drugs. We oppose this decision and believe it is a violation of our basic rights.

We feel this is a very balanced article that exposes the challenges the industry is undergoing, and finally gives patients a voice too. Real patients discussing real concerns balanced against academics with theoretical concerns.

Part of our mission is to expose the severe financial biases of academics who are frequently tapped as experts in stem cell stories. For example, you quoted as an expert George Daley, who holds the following embryonic stem cell & IPS patents:

-2008 President-George Daley-Children’s Hospital-
-Creating Embryonic Stem Cells for Mass production-PCT/US2007/019935
-Method for Enhancing Proliferation of Stem Cells-PCT/US03/29185
-Proprietary Kit to see if an iPS Cell is Correctly Manufactured-PCT/US09/57849
-Method to Create iPSC’s (artificial stem cells)-PCT/US08/12532

Any of these multi-million dollar patents would be rendered worthless if doctors routinely use autologous stem cells in the practice of medicine.

Again, great work and congratulations for giving patients a voice!

Sincerely,
SammyJo Wilkinson, a member of Patients For Stem Cells
www.patientsforstemcells.org

AUTHOR’S RESPONSE

Thank you for your help with my story and for the close reading of it now. I understand your concerns about the competing financial interests of many of those involved in stem cell research and I’m glad you are reminding us all of that. Everyone I spoke with–scientists, executives, and patients alike–has something at stake. I believe George Daley was speaking out of concern for patients generally, not only those seeking treatment with autologous stem cells.
I appreciate the opportunity to respond.

Regards, Susan

Lacks opposing viewpoints – In the Flesh: The Embedded Dangers of Untested Stem Cell Cosmetics

Biased Journalism Category: ARTICLES THAT LACK VETTING OF SOURCES AND/OR OPPOSING VIEWPOINTS
Media item: In the Flesh: The Embedded Dangers of Untested Stem Cell Cosmetics
Publisheed by: Scientific American
Author: Ferris Jabr

Dec 27, 2012 the following letter was sent to Ferris Jabr, followed by a second request on Jan. 7, 2013. No response, so we are posting our comments here, and invite a reply from the author.

Our group, Patients For Stem Cells, represents patients who have been denied access to our own stem cells because the FDA has regulated our cells as drugs. We oppose this decision and believe it is a violation of our basic rights. Your article, “In the Flesh: The Embedded Dangers of Untested Stem Cell Cosmetics” relates the case of a woman treated at a clinic in Beverly Hills with adverse results, for which she can pursue the doctor if this indeed was malpractice. The article fails to mention that and wanders off course going so far as to state,”Beyond the considerable risks to consumers, unapproved stem cell treatments also threaten the progress of basic research and clinical trials needed to establish safe stem cell therapies for serious illnesses.”

So now, we have gone from a woman receiving a questionable cosmetic treatment to the treatment being an indicator that all stem cell treatments are risky. You also fail to vet the “experts” quoted in the article.

We know that you take your job seriously and that clinics do exist that exploit patients. Having said that, In the interests of good journalism, we know that you will undoubtedly be in favor of presenting opposing viewpoints and vetting those that you use as sources in your article. We would like a chance for a few of us to correspond with you. Thank you in advance for the opportunity.

Your response as well as this letter will be posted on our web-site, www.patientsforstemcells.com.

Sincerely,

SammyJo Wilkinson, a member of Patients For Stem Cells
www.patientsforstemcells.org