Monday, January 28, 2013

Patient Advocate Reed Defends Patient Advocates on Stem Cell Board

Patient advocate Don Reed, declaring that the Institute of Medicine's (IOM) 17-month study of the $3 billion California stem cell agency is "grossly misguided," this weekend nonetheless said the agency took "the high road" in its response to the study's recommendation.

Reed, of Fremont, Ca., was particularly incensed about the IOM's recommendations concerning patient advocates on the board. The IOM said that none of the board members, including patient advocates, should vote on grant applications secretly in grant review groups. The IOM said their votes should be recorded in public at full board meetings. Other patient advocates would still have seats on the grant review group, under the IOM recommendations. But they would not also be members of the governing board.

The IOM also said that CIRM should also revise its conflict of interest standards to regulate personal conflicts of interest, such as those involving particular diseases and patient advocates. Some members of the CIRM governing board bristled at the recommendation, and the board did not act on it last week.

Last Wednesday, the CIRM board acted to permit board members who are patient advocates to continue to participate in the closed door grant review sessions, but not vote on the grants at that stage. Previously patient advocates had two cuts at applications, one in the grant review group and one at the public board meeting.

Writing on the Daily Kos blog, Reed also said that no real conflicts of interest currently exist on the board, although 90 percent of the $1.7 billion that has awarded has gone to institutions tied to board members.

1 comment:

  1. Anonymous1:21 PM

    The IOM recommendations, if adopted, would have made the California Institute for Regenerative Medicine (CIRM) a closed shop.

    Supporters of open government should be glad we do not have a system where all substantive decisions were made behind closed doors, and the public had its rights of participation stripped away.

    Under the IOM recommendations, the only public vote on stem cell research projects would be an up-or-down vote on a group of projects, perhaps 50 at a time.

    Neither the publicly appointed board of directors, nor the public itself would be allowed to comment or vote on the projects themselves-- and that decision-- where the money goes-- is the most important job of the entire program.

    Presently, the public can support various research projects. We can speak up, three minutes each of public comment, and then the board of directors will vote.

    The ICOC bent over backwards to avoid even the appearance of a conflict of interest--every member whose organization had a chacne of getting a grant has now denied themselves the right to vote

    LA Times columnist Mr. Hilzig may have a problem with the decisions of the California electorate, which overwhelmingly said yes to Prop 71 with its very specific requirement for a board of experts, but that is democracy.

    I personally do not appreciate Mr. Hiltzig's eternally sneering invective against a program I regard as honorable and fine, good people working hard to solve chronic disabilities and diseases.

    But that is also democracy. Mr. Hiltzig has a right to trashtalk Prop 71-- and California has the right to support it.

    Don C. Reed


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