By Ana B. Ibarra
August 15, 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.
Ana B.
Ibarra: aibarra@kff.org,
@ab_ibarra
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