Monday, June 18, 2018

California Stem Cell 'Renewal:' The Search for More Billions -- And Credit for Results


A KTVU video connected to CIRM's research support

California's 13-year-old stem cell agency, which is facing its demise as it lingers in a dim media shadow, last week snagged some credit for the work it has helped to finance in saving the life of a five-year-old girl. 

The news story appeared on San Francisco Bay Area television station KTVU. The piece involved Evangelina “Evie” Padilla Vacarro, who was born with what is known as the "bubble baby" disease. That is a genetic affliction that compromises the immune system so severely that it is nearly impossible for a person to survive.

Evie's story is powerful and well-known among those who closely follow the $3 billion California Institute for Regenerative Medicine (CIRM), as the stem cell agency is formally known. But it has not seeped in the consciousness of California voters, who are likely to be asked to cough up $5 billion more for CIRM.

The agency expects to run out of cash by the end of next year. It is pinning its survival hopes on a private fundraising drive underway this year and passage of a proposed bond measure in November 2020. However, many competing priorities exist for that sort of funding. Plus the agency has yet to fulfill voter expectations that creation of the agency would lead to a stem cell treatment that would have widespread use.

In Evie's case, the treatment is available under exceedingly limited circumstances, like other treatments that the agency is supporting. They are still being tested before the federal government approves them for wider use.

The positive results that are, in fact, surfacing often do not mention CIRM's substantial backing, or they bury that fact so deeply it is all but invisible. (See here, here and here.) That is occurring despite the fact that many of those stories emerge from institutions that have received tens and tens of millions of dollars from the agency.

The fresh news peg for the KTVU story last week was the launch of a book, “California Cures: How the California Stem Cell Program is Fighting Your Incurable Disease," by longtime stem cell patient advocate Don Reed. The station reported,
"'Lives have been saved, and suffering eased, because California stood up for stem cells in 2004,' Reed said. 'Now as we approach the end of that (2004) voter-approved program, it is vital that everybody knows the story of (the institute) and why we must renew its funding.'"
Whether that "renewal" actually takes place may depend on whether the researchers and institutions that have benefited from CIRM's largess do a much better job of selling what they believe are the benefits and importance of the agency's programs and cash.
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