02 February 2013

Patient Advocates & California Institute of Medicine

You can read Don Reed's full report at www.stemcellbattles.com.

Firstly, I like to thank everyone who sent an email to make sure that the voices of patient advocates were not removed from the California Institute of Regenerative Medicine's (CIRM) board of directors.

A recent study raised concern that, "The committee believes that personal conflicts of interest arising from one's own or a family member's affliction with a particular disease...can create bias for board members.." 

While we may laugh at such a crazy statement, there was serious concern that this would be the end of patient advocates' right to vote on important projects.

After reading this statement, one person told me that it would be similar to workers giving control of their unions to bosses so that there was no conflict of interest.

Another person wrote to me that patients organizing for cure was not a conflict of interest, but rather a convergence of interest.  

Here is what Don Reed has to say about patient advocates. "Patient advocates are the people who organized, led, fought for, and supported Proposition 71, the citizens’ initiative which led to the California Institute of Regenerative Medicine. Bob Klein who inspired the program has a son with type one diabetes. My son Roman Reed is paralyzed from the shoulders down. Patient advocates stood on street corners for nearly a year gathering signatures to get the measure on the ballot. Without us, there would be no three billion dollar stem cell program."

"Yet now, having done the work, we were not to be part of the decision-making?"
Well, some changes were made, almost unanimously to make sure that any whiff of conflict of interest was removed.
In regards to patient advocates' voices. We lost the right to vote on the Grants Working Group, which recommends research projects to the board, but patients on the board still have the right to vote and participate in public comment.
I would say this was a victory for all of who sent in their emails.
Please read Don Reed's full report at www.stemcellbattles.com.

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