By Barbara Feder Ostrov | CalMatters
California’s stem cell research agency was supposed to be winding down its operations right about now, after a 16-year run and hundreds of millions in grants to scientists researching cutting-edge treatments for diabetes, cancer, Alzheimer’s and other diseases.
Instead, the taxpayer-supported California Institute for Regenerative Medicine will get a $5.5 billion reboot after voters earlier this month narrowly passed the Proposition 14 bond measure. The overall cost of the bonds with interest will total about $7.8 billion.
“We’re thrilled that California voters saw fit to continue the work we’ve done,” said Jonathan Thomas, chair of the agency’s governing board. “California has always had a frontier mentality and a love for the cutting edge, and the work that CIRM has done has put it on the very forefront of regenerative medicine.”
Even with California’s economy in a coronavirus-induced tailspin and some scientists arguing that stem cell research no longer needs taxpayer support, Prop. 14 passed with 51 percent of the vote after well-financed supporters poured nearly $21 million into the Yes on 14 campaign. The measure was essentially a rerun of Proposition 71, which California voters approved in 2004 after a since-revoked federal ban on embryonic stem cell research.
The institute also must contend with longstanding concerns over conflicts of interest that have dogged it since its inception, observers say. About 80% of the money distributed has gone to universities and companies tied to agency board members, according to an analysis by longtime agency watchdog David Jensen, a former Sacramento Bee journalist who runs the California Stem Cell Report blog and wrote a book on the institute.
Prop. 14 allows the agency to fund a wider array of research projects — even some that don’t involve stem cells, but instead are related to genetics, personalized medicine and aging.
That’s necessary because the field has evolved, said Paul Knoepfler, a UC Davis professor of cell biology who studies the role of stem cells in cancer and writes a stem cell blog. He received a 2009 grant from the institute.
“Stem cells are interesting and important, but there are going to be a lot of new therapies in the next 10 years that are not stem-cell centric,” Knoepfler said.
Other changes for the agency include:
- Where earlier grants were unrestricted, now at least $1.5 billion of the new money approved by taxpayers must be devoted to research on brain and central nervous system diseases like Alzheimer’s and Parkinson’s.
- Some grants will support training for California State University and community college students. The institute’s board, stocked with scientists, treatment advocates, academic administrators and biotech executives, will grow from 29 members to 35.
- The agency also will add staff to work on improving access and affordability of treatments for patients — a growing concern as some stem cell therapies can cost more than $1 million for a single treatment course. Prop. 14 requires the institute to use any revenue it gets from inventions it supports to help pay for patients’ regenerative medicine treatments, although how that will happen has not yet been worked out.
Ysabel Duron, who joined the institute’s board late last year, said she sees her role as promoting equity in opportunities for both researchers and patients and ensuring that treatments resulting from the research can benefit all Californians.
Researchers in particular need to boost the diversity of patients in their clinical trials and do a better job communicating the value of their work to the public, Duron said, noting that nearly 40% of Californians are Latino.
“We need to keep researchers’ feet to the fire,” said Duron, a former television journalist and founder of the Latino Cancer Institute. “They need to show us a plan and we need to reward them.”
To date, the agency has funded 64 clinical trials of treatments for many types of cancer, sickle cell disease, spinal cord injuries, diabetes, kidney disease and amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. But the most advanced trials involve therapies for relatively rare conditions, such as Severe Combined Immunodeficiency known as the “bubble baby” disease, Jensen noted. That therapy is being reviewed by the FDA but has not yet been approved.
“Cancer, heart disease — these are the big killers. That’s what most people are interested in,” Jensen said. “You can fund something for a rare disease, but that doesn’t affect the majority of Californians.”
And, Jensen asks, what will happen after the agency runs out of money again? Will taxpayers once again be asked to refill its coffers? There was hope when the agency began that revenues from successful treatments would sustain its grant-making in the years to come, but the institute has only received a few hundred thousand dollars, not nearly enough to become self-sustaining without taxpayer support, according to the Legislative Analyst’s Office.
“The sustainability issue is important and it’s hard to address,” Jensen said. “The money doesn’t last forever.”
CalMatters is a public interest journalism venture committed to explaining how California’s state Capitol works and why it matters.
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