CIRM updates the public on its stem cell research funding

For some time now, we’ve been reporting on the news involving stem cell clinical trials taking place throughout the U.S.  Most recently, we’ve covered the trials taking place here in California, especially those funded by the California Institute for Regenerative Medicine (CIRM).

CIRM is a state agency that was developed as a result of a voter-approved bond measure in 2004 resulting in $3 billion to fund stem cell research to help cure diseases and disorders.  Thus far, the agency has deployed $2.3 billion in funding for research and studies that has led to 35 clinical trials.

   CIRM CEO, Dr. Maria Millan, updates the attendees on the progress of the state agency.  In the slide behind her is former Santa Clara Valley Medical Center patient, Jake Javier, is shown.  Jake suffered a cervical spinal cord injury in June 2016.

CIRM CEO, Dr. Maria Millan, updates the attendees on the progress of the state agency.  In the slide behind her is former Santa Clara Valley Medical Center patient, Jake Javier, is shown.  Jake suffered a cervical spinal cord injury in June 2016.

This past Wednesday, CIRM held a public event at the Gladstone Institutes in San Francisco and NorCal SCI co-founder, Franklin Elieh, made the trip to attend the meeting.  The event is one of three CIRM holds throughout the state every year to report on the progress being made and how the funding is being invested. There were roughly 60 people in attendance and I was probably the only one with a spinal cord injury.  There were a few other people with different types of diseases or disorders also in attendance but the meeting didn’t seem to draw actual individuals who were inflicted by a condition.

The meeting featured presentations from two researchers who discussed the projects they were involved with that incorporated the use of stem cells.  The interim CEO of CIRM, Dr. Maria Millan, as well as retired state senator, Art Torres, also spoke about the state of the program and their vision for its future.

As you can imagine, they’re looking down the road when that $3 billion will run out and so, they’re beginning the work to go back to the voters in 2020 to ask for an additional $3-$5 billion in funding.

I was injured in 1989 and throughout the years, I always kept hearing from many sources about potential cures for SCI happening soon, only to see year after year go by with nothing to show for.  It was, and remains, an elusive goal for scientists to nail the cure.  Then, in 1995, Christopher Reeve joined the SCI community when he suffered a high-level injury.  Using his influence, he was able to raise the understanding and bring to the forefront the effects of SCI.  He used his celebrity status as a platform to push for greater research into conquering SCI and along the way, he founded the Christopher Reeve Foundation in 1998 to help promote research into a cure for SCI. 

Around the time that the leaders of Proposition 71 were drumming up support for its passage, Reeve died.  Prop 71 was ultimately passed by 59% of California voters.  I remember the excitement and euphoria of the passage because it removed funding as an excuse for not being able to find the cure.  I think Reeve helped make the general public more aware of the effect of SCI on someone and it definitely contributed to the passage of prop 71 in 2004.

Yet, 13 years later, all CIRM has to show for in spinal cord injury is the current Asterias Biotherapeutics stem cell clinical trials.  One trial.  Just one.  What happened to all that hope and excitement?  When it came to spinal cord injury, it pretty much fizzled.  There was the case of Geron Corporation’s abrupt stoppage of its clinical trials that devastated the SCI community back in 2011 after the company realized that it could not withstand burning through cash on an elusive SCI cure and turned its attention toward cancer therapies instead.  Fortunately, Asterias stepped in a couple of years later and resumed the clinical trials which are still in the early stages.

Nonetheless, CIRM has funded nearly $60 million in grants (about 2.6% of the $2.3 billion already allocated/funded) for about 20 studies toward finding a cure for SCI but only the Geron/Asterias one has gotten to actual clinical trials.  The rest of the funds have been spent on many other diseases/disorders with some promising results.   

At Wednesday’s discussion, as the lone representative of the SCI community, I asked why CIRM is not funding more studies that are going on all over the U.S. and the world.  The answer was that the bond stipulated that the funding was limited to California-based research.  OK, makes sense in theory.  Taxpayers don’t want to see their funds spent elsewhere but wait a second.  What was the real purpose of CIRM and the idea behind Prop 71?  It still says it on their web site:  to accelerate stem cell treatments to patients with unmet medical needs.  Research cannot be conducted based on geographic location of the work.  Usually, one would think, you would want to bring the best and brightest minds together, remove the funding obstacles and let them go at it.  You can search all the current research and trials involving SCI at https://www.clinicaltrials.gov/.

There are brilliant minds all over this country and world.  Many of their work is constrained by a lack of funding.  Look, research is expensive but the cost associated with the care of someone with SCI dwarfs that amount by an unthinkable factor.  Do we want to think that small in a state known for global innovation and development?  There are many brilliant research initiatives taking place all over the world, research that needs to be fast-tracked with some serious funding from an agency like CIRM.

Another concern I have is the lack of the general public’s awareness of the benefits of CIRM.  Typically, the person and their immediate circle of family & friends (afflicted with a disease or disorder that can potentially be cured with stem cell) take a deep interest in CIRM’s work but the reality is that a lot of people today may not know what CIRM is all about.  If the public doesn’t see enough tangible proof that the $3 billion was invested wisely and had demonstrated results, they’d be less supportive of approving another $3-5 billion in 2020.  My fear is that all it would take for the whole thing to collapse is a well-funded campaign by the opponents of CIRM pointing out to lack of significant progress coming from 16 years (by the 2020 election) of work.

So, here we are in 2017.  There hasn’t been a significant demonstration of benefit of the Asterias-backed clinical trials yet and it’s been slow in enrolling candidates.  Could they get to the same conclusion that Geron did and give up?  And if that happens, then what?  I’ve been waiting for 28 years and I have all but given up on any hope for a cure during my lifetime.  But for this to have a chance to succeed, it needs bold thinking and courage for the leaders of CIRM to convince the voters of a different approach.  Look, I get it.  The SCI population in the U.S. is not that large (roughly 250,000 living individuals with SCI) compared to many other diseases but it shouldn't matter.  We simply need more research to advance to clinical trial stages.  As one of the speakers alluded, “to boldly go where no man has gone before.”

NEXT CIRM PRESENTATION:  There will be another public forum and presentation on Tuesday, Oct. 10th at the UC Davis MIND Institute in Sacramento at 11 a.m.  To get free tickets, CLICK HERE.