Stem cell institute maps out strategy;

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Plan will determine how $3 billion spent

The San Diego Union-Tribune

How to spend $3 billion for stem cell research is proving to be a monumental and sometimes divisive task for California’s Institute for Regenerative Medicine.

What’s the low hanging fruit in stem cell research that could move the science forward? Should funding priority be given to research that could help the largest number of people, or should it be directed to orphan diseases that affect a small segment of society and aren’t of interest to big pharmaceutical companies?

How much money should be spent inventing tools that could help scientists involved in stem cell research?

As the stem cell institute develops its strategic plan — its road map for spending $300 million a year in taxpayer money — many people want their opinions heard on these weighty issues.

Deciding who should develop the plan has already created rifts between scientists and patient advocates on the board overseeing the institute.

However, one point everyone seems to agree upon is that this will be the institute’s most important policy.

“Ten years from now, people won’t look at California and say, ‘Wow, they have the best medical and ethical standards in the world,’ or ‘Their intellectual property policy cut new ground,'” said Zach Hall, president of the institute. “What people will really care about is whether we spent our money well. Did it yield something to improve the quality of life, not just for Californians, but for everyone?”

Yesterday, at a meeting of the institute’s oversight board in Los Angeles, Hall explained how he intends to develop the strategic plan. He has been charged with writing its first draft, and his plan for doing it has evolved during the past two months as he received input from myriad sources. The 29-member board will revise Hall’s draft and approve a final version.

Hall envisions the process will take at least six months, involving public meetings, opinion gathering from scientists and brainstorming sessions with philanthropic groups that have experience spending other people’s money.

The public, which is to pay what ultimately will be a $6 billion bill, will have several opportunities to weigh in, at hearings in San Francisco, Los Angeles and San Diego.

While much about the strategic plan remains amorphous, this much is certain: It won’t be a laundry list of diseases to be cured. It will be a plan that allows the best and latest scientific discoveries to influence where the taxpayer money is invested, Hall said.

And it will be fluid, because in the 10 years California intends to provide funding, scientists will likely make discoveries that catapult some research ahead of others, Hall said.

Hall likened planning the state’s stem cell initiative to planning the Human Genome Project, a 13-year international effort to map the pool of 20,000 to 25,000 genes in human DNA.

“In the Human Genome Project, we at least knew what the endpoint would be. It was just a technology question of how to get there,” Hall said. “In our case, we are asking questions that no one knows the answer to because stem cell research is so new.”

Although the strategic plan is still in its infancy, the process is showing how different factions, such as patient advocates, feel strongly and emotionally about prioritizing the work to be done.

For weeks, the institute’s oversight board was split over whether Hall should be charged with developing the plan.

Hall, a renowned scientist, spent three years managing 700 scientists and a $630 million budget as head of one of the National Institutes of Health. He was also a top administrator at the University of Southern California and UC San Francisco.

“Zach is an extremely intelligent individual with a huge amount of experience at going about something like this,” said board member Dr. Edward Holmes, dean of the UCSD Medical School.

But patient advocates on the board weren’t ready to give Hall the task. Board member Jeff Sheehy, who represents people with HIV/AIDS, said his concern was about one individual being entrusted with such a momentous task.

Taxpayer advocates agreed.

“This is the most important thing they are doing right now and since the public is paying the bill, it should be hammered out in public,” said John Simpson, of the Foundation for Taxpayer and Consumer Rights.

At the board’s February meeting, before a vote could be taken allowing Hall to move forward with the strategic plan, Sheehy said he had to leave. His departure deprived the board of a quorum, preventing a vote.

Since then, Hall has spoken with Sheehy, other patient advocates and with Simpson to assure them that development of the strategic plan would embrace all voices and viewpoints.

“And in the end, what I think we’ll have is a product of compromise on everyone’s behalf,” Hall said.

Simpson said that after hearing what Hall intends to do, he is “very encouraged.”

From the beginning, Sheehy and other patient advocates, including activists for people with Parkinson’s disease, autism and multiple sclerosis, have been adamant that they have a hand in drafting the plan.

“We (patient advocates) bring the sense of urgency to this research,” Sheehy said. “Our motivation is really geared around advancing science and finding better treatments. It’s not about winning the Nobel Prize, and it’s not about getting rich.”

Proposition 71, the ballot initiative that directed $3 billion toward stem cell research in California and created the stem cell institute, included patient advocates, biotechnology industry insiders and academics whose institutions would benefit for the funding.

While that has brought skepticism about conflicts of interest, it was meant to put together a group that understood the need for new therapies from many perspectives.

Sheehy was adamant that his push to be involved in devising the strategic plan was not about promoting the agenda of the specific patient population he represents.

“We tend to think of disease advocates as being tied to a specific disease when, really, it is just a mode of operating and thinking,” Sheehy said.

“My father has Alzheimer’s, my mother was diagnosed with ovarian cancer, and I have HIV and my greatest risk factor right now is cardiovascular. If I had to chart today what I want to cure first, this morning, it would be ovarian cancer. My point is that everyone in California is impacted by chronic life-threatening disease. And I don’t so much want to cure my disease as I want to cure something.”

Yesterday, the oversight board gave Hall approval to begin negotiating a contract with PriceWaterhouseCoopers, which will help the plan’s development by setting up public hearings and meetings that would bring together experts in finance, philanthropy, science and academia to share ideas on how the institute should spend its money. That process is not to exceed $500,000, including the cost of public meetings and advertising them, which Hall said he thought could be up to $100,000.

The institute does not have the staff or the experience to handle the meetings for the strategic plan, prepare materials necessary for its participants and gather the information collected in public testimony, Hall said.

Also yesterday, the institute accepted $500,000 in donations to fund its scientific activities. Ed Penhoet, a former biotechnology executive and vice chairman of the institute’s board, donated $50,000. Additional $50,000 donations were made by E. Hugh Taylor and Richard K. Robbins. The Richard and Rhoda Goldman Foundation donated $350,000.

Meanwhile, Robert Klein, chairman of the oversight board, has been soliciting bridge funding from philanthropic groups. Klein said he has received commitments for $50 million in funding. On Tuesday, the state finance committee approved the acceptance of $14 million.

The funding is intended to allow stem cell research to go forward while state officials fight litigation challenging the constitutionality of Proposition 71. The litigation has prevented the state from selling bonds to support the initiative.
Contact the author Terri Somers at (619) 293-2028 or [email protected]

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