Wednesday, June 01, 2005

Patient Group Members Mobilize Against SCA13

Members of patient groups are barraging legislators with appeals to reject efforts to tighten oversight of the California stem cell agency. Some of the appeals are being couched in life-and-death terms.

The outpouring was predictable given the deep ties that the agency has with the groups, whose members hope to benefit from future therapies developed by research financed by the agency. A number of the members of the stem cell Oversight Committee come specifically from patient groups. The agency undoubtedly has lists of supporters as well. The allied nonprofit organization that grew out Prop. 71 campaign committee also is likely to be involved in the lobbying campaign, as it was earlier this year.

One email sent from a CIRM address by a CIRM staffer to a group of sympathizers was basically an informational pitch. It did note that the Oversight Committee thought SCA13 would have a detrimental effect. The email included attachments from a number of organizations concerned about SCA13, including the University of California, Stanford, USC, Caltech and the Salk Institute. It also included the agency's critical analysis of the legislation. But the email did not advocate that the recipients take a position or lobby legislators.

We should note that out of the six documents attached to the email, only one has been accessible to the general public in a posting on CIRM's web site.

In response to a question about lobbying on SCA13, Nicole Pagano, a spokeswoman for CIRM, said, "Those advocates who contact us receive information as any member of public would. ICOC members who are patient advocates like Joan Samuelson and Jeff Sheehy may attempt to educate their own communities and constituencies because they are opposed to SCA13 as currently drafted, but CIRM staff is not engaged in mobilization campaign efforts."

The measure is expected to come up for a vote on the Senate floor either Thursday or Friday.

If readers of this blog are interested in receiving copies of the items attached to the CIRM email, please send a note to me at I will send them along to you. Sphere: Related Content

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