Wednesday, February 15, 2006

Clashing Interests on the Stem Cell Oversight Committee

It happened so quickly that only a keen-eyed parliamentarian might have noticed.

One minute the Oversight Committee of the California stem cell agency had a quorum. The next minute it didn't. It was late in the day last Friday. Some members had already left. Then two more members left the room, after expressing displeasure about procedures to create a long overdue strategic plan on how to spend $3 billion. That stymied a vote on the proposal.

"I am extraordinarily disappointed," said Oversight Committee member Claire Pomeroy, dean of the UC Davis Medical School, "that we are not going to have a quorum. We have not carried through on our responsibilities." Her comments came well after the departure of the two other committee members.

On the surface, the matter seems minor – planning a plan, what could be more picayune? But the real stakes – broadly speaking – pit the priorities of the patient advocates against the academic contingent on the board The patient advocates – 10 out of 29 persons on the committee -- represent groups of persons who have diseases that could benefit from stem cell therapies. Generally, the advocates emphasize great speed in bringing cures to the marketplace. The academicians on the board stress thorough science and warn that it is a slow process.

Serving as backdrop to their issues is the Korean stem cell scandal. Some say the focus on speed was one of the causes leading to the fraud.

On Friday, the plan for the strategic plan was carefully laid out by CIRM President Zach Hall. He said it would be a $500,000 effort, conducted by CIRM staff and brought to the board for approval and changes in the summer of 2006. Hall said Price Waterhouse Coopers would be chosen to assist in devising the plan. Overseeing the effort would be a relatively small subcommittee of Oversight members, selected by Hall.

It was the nature of subcommittee that triggered the objections of the two board members, David Serrano-Sewell and Jeff Sheehy, who walked out of the meeting. Serrano-Sewell said he said he was uncomfortable with the subcommittee and not knowing who would be on it. Sheehy echoed his concern. Their objections were relatively brief compared to the hours-long discussion of the planning process at December's Oversight meeting.

One of the issues complicating the process of coming up with a plan is a state law that requires the public to be notified well in advance of meetings by public bodies.

Hall's plan would avoid much of the time-consuming process by minimizing the number of required public meetings. It would also make it easier to call meetings of the public subcommittee. A smaller group means fewer schedule conflicts when setting up sessions. Hall did indicate that he did not want to short-change the public in terms of its opportunity to make its voices heard.

Representatives from academic institutions praised Hall's plan at Friday's meeting, noting that it was similar to the way their organizations operated. In other words, charging the staff to develop the proposal and bring to it the full board for changes and approval.

But Joan Samuelson, a patient advocate, said the strategic plan was very important and that the board was going to have to "own" it. She later told us that the patient advocates wanted to be very involved in planning and said that others seemed more worried about complying with open meeting laws than the stem cell research.

The discussion of the issue at Friday's meeting was relatively brief. To catch a better flavor of the positions here are a few excerpts from December's Oversight Committee meeting, which unveiled many concerns.

Jonathan Shestack, founder and president of Cure Autism Now:
"The motion that you have before you is a recipe for no board involvement in the strategic planning. Yes, it is. It makes that possibility very real. it makes all input be at will of staff except for presentation at the ICOC meetings. These are large, fairly unwieldy meetings....I don't mean to be negative about the staff because they are expert and fantastic, and we depend on them, but there is right now no real mechanism on the strategic decisions for the various communities to participate, particularly advocacy and particularly industry. And I think that just giving the full duty to staff and saying present it to us once in a while, and we'll tell you what we think is not to get into the detail that some people would want."

David Serrano-Sewell, representing the
Amyotrophic Lateral Sclerosis Association and National Multiple Sclerosis Society
"Commitments from the office of the (CIRM)president...just putting it in one individual -- for me, right now --is not enough. (During) my conversations with my appointing officer (the person who appointed Sewell to the CIRM board), there was a real commitment that we do a good job to represent our constituencies. and for me that's MS and ALS".

"I also think there is a danger when all the positions -- academic, advocacy, industry -- are not talking to each other, talking only to a central person who then filters their needs."

Gerald Levey, dean of the UCLA Medical School
"I would hope that the board is not so balkanized that we think about who we represent and how we got here. i think now that we're a board, we're supposed to be thinking like we all have the same goal, the same purpose. and I would hope that the goal is to further stem cell research in the state of California -- not whether academia is being served better in the process or industry or what have you. So i hope that we don't get into a situation where we have us against them on the board."

"The matter of the plan concluded at Friday's meeting with discussion of another plan to hold a conference-call meeting in the next few weeks of the Oversight Committee to vote on Hall's plan for the plan

One final note: Nineteen members of the 29-member Oversight Committee are required for a quorum. Otherwise, the board cannot take legal action.

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