Despite failed promises, stem cell advocates again want taxpayers to pony up billions

Reviewed by James Ives, M.Psych. (Editor)Aug 16 2019

Californians voted in 2004 to shell out billions of dollars in taxpayer money to fund cutting-edge stem cell treatments.

Proposition 71 could lead to cures for cancer, Alzheimer's and other devastating diseases, voters were told. Actor Michael J. Fox, who has Parkinson's disease, said in one campaign ad that the measure "could save the life of someone you love."

But 15 years later, there are no readily available cures. And the state's stem cell agency, which administered the bond money, is about to run out of funding.

The California Institute for Regenerative Medicine (CIRM) announced in July that it had stopped taking applications for new research projects, and it will award its final grants for new projects by September, an agency spokesperson later said.

But supporters already plan to go back to voters in November 2020 to ask for even more money than last time: $5.5 billion, plus interest. The previous $3 billion bond measure cost taxpayers about $6 billion, with interest.

"It's a lot of money, even for the state of California," said Marcy Darnovsky, executive director of the Berkeley-based Center for Genetics and Society.

Her group supports stem cell research but opposed Proposition 71 partly because of its "extremely exaggerated promises for stem cell cures," she said.

If you measure the agency's success against the campaign promises, "then CIRM has been a flop," Darnovsky said.

But the agency, and the academics who have received the funding, are pushing back, saying scientific research takes time. Even though the Food and Drug Administration has not yet approved any treatments funded by CIRM, some are under review, researchers say.

CIRM has funded 56 clinical trials of treatments for ailments ranging from cancer, sickle cell disease, HIV and vision loss, said agency spokesman Kevin McCormack.

For instance, scientists say the results from a clinical trial that focused on spinal cord injuries — and was partially funded with a $14.3 million grant from the agency — are promising. One participant, Danville resident Jake Javier, 21, was paralyzed from the chest down in 2016 after a diving accident on his last day of high school. After taking part in the trial, he can now push his own wheelchair because of the motion he regained in his arms and hands. He credits both "natural recovery" and the experimental treatment for his improvement.

"If we're not here, who funds that?" McCormack said. "The concern is that a lot of promising research might just disappear, because without the money you can't do the work."

Stem cells hold great potential for medicine because of their ability to develop into different types of cells in the body, and to repair and renew damaged tissue.

While there are hundreds of clinics across the country that offer unproven and potentially dangerous stem cell treatments, a significant amount of legitimate research is underway — along with some breakthroughs.

When Californians approved Proposition 71 with 59.1% of the vote, stem cell research was still in its early stages. Three years earlier, President George W. Bush restricted the use of federal funding for embryonic stem cell research, citing his opposition to the destruction of human embryos. President Barack Obama lifted the Bush-era restrictions in 2009.

In the absence of federal funds, Proposition 71 allowed scientists in California to conduct stem cell research using human embryos — in addition to other types of stem cell research. Conservative groups opposed the measure, delaying the early grants by filing lawsuits.

State Sen. John Moorlach (R-Costa Mesa) opposed the 2004 measure because he said it made unrealistic promises to voters.

"I'm not anti-stem cell, I'm just anti-oversell," he said.

Proponents of the measure also said the research would result in revenue for California. The state only recently received its first royalty checks related to brain cancer research funded by the agency, totaling about $286,000.

"All it's produced in revenue for the state just came in the last year or so, and it was spit," he said.

Moorlach said he's against a new bond measure.

But Dr. J. Patrick Whelan, an assistant professor of Pediatrics at UCLA's Geffen School of Medicine, said he thinks there is value in going back to voters and "checking their temperature."

While some private funding and philanthropy does support stem cell research, this type of work is expensive and requires more than a few wealthy donors, Whelan said.

If funding is not replenished, researchers like Jan Nolta, director of the University of California-Davis Stem Cell Program, fear that many promising projects would fall into "the valley of death."

"That's just sad to think about, especially for the patients," she said.

Alysia Vaccaro's 6-year-old daughter, Evangelina, was a patient in one of the agency-funded clinical trials. Evie, as she is called, was diagnosed with severe combined immunodeficiency, or "bubble baby" disease, weeks after she was born in 2012. Children with this condition have no immune system and are highly vulnerable to infectious diseases.

As an infant, Evie participated in a UCLA trial in which stem cells were taken from her bone marrow, modified to correct the defect, and then re-transplanted.

She is now considered cured and is about to start the first grade in Corona, Calif. She has flown on a plane and has received some childhood vaccines with no side effects — things that would have been ill-advised before this treatment.

"She's now a fully vaccinated 6-year old with a functioning immune system," Vaccaro said. Participating in the clinical trial was "like winning the lottery."

Real estate developer Robert Klein, who was principal author and donor of Proposition 71, is drafting the 2020 proposal. He said the new funding would continue the agency's work and could help expand the Alpha Stem Cell Clinics Network, which was funded by the previous bond measure, into regions such as the Inland Empire and Central California. The network is made up of five clinics statewide that host FDA-approved clinical trials.

"We want to bring these clinical trials closer to patients — make them more accessible," he said.

This KHN story first published on California Healthline, a service of the California Health Care Foundation.