Yes or No on More Money for California's Stem Cell Program? Your Chance to Vote Today

It's time to vote -- sort of -- on whether to kick in $5 billion more for California's $3 billion stem cell research program.

Recent results from poll on CIRM

I say "sort of" because the voting consists of a poll being conducted by UC Davis researcher Paul
Knoepfler on his blog, The Niche. Initial results are already in. Sixty-three percent of those responding say they would definitely vote for a ballot measure to "refund" the agency.  (That figure jumped to more than 67 percent by Sept. 1,  three days after this item appeared. You can vote by clicking on this link.)

The poll, of course, is non-scientific, and the readers of Knoepfler's blog are hardly representative of the state's voter profile. Presumably those who seek out his blog are more informed about and more interested in the California stem cell agency than the average California voter . Nonetheless, it is an interesting exercise.

The question posed by Knoepfler's poll is not trivial. The agency, formally known as the California Institute for Regenerative Medicine(CIRM), expects to run out of cash for new awards at the end of next year. It hopes voters will approve a proposed ballot measure in November 2020, giving it another $5 billion.

If you would like to know more about the case to be made for the agency, search this blog (the California Stem Cell Report) using the term "assembly biotech hearing."  That will take you to seven brief brief articles related to a legislative informational hearing on the work of the agency over the last 13 years.

State Lawmakers Hear Story of a Life-Saving Treatment and the California Stem Cell Agency

Pawash Kashyap and son, Ronnie

A father from Folsom, Ca., earlier this month told a state legislative committee about how his baby boy was saved through a clinical trial that was being financed by the Golden State's $3 billion stem cell agency.

"It was a blessing day for us," said Pawash Kashyap, who appeared before the Assembly Select Committee on Biotechnology,  which held a hearing Aug. 15 dealing with the California Institute for Regenerative Medicine (CIRM), as the agency is formally known. Kashyab referred to the occasion when he and his wife, Upasana, received a call from UC San Francisco warning him of the immune deficiency that afflicted their baby, Ronnie.

Researchers told them that the child could well die if he suffered from even a slight infection. The immune deficiency is sometimes known as the "bubble baby" disease, which has sometimes meant children were encased in plastic bubbles to stave off infections.

The problem was detected by routine newborn screening. Kashyap told legislators of their concern after learning the bad news.

"We Googled it, and nothing good was coming out of it."

Ultimately, the Ronnie was treated successfully. His father said that Ronnie has experienced potentially infectious crowds in malls and elsewhere and that he is doing "fantastically well."

Ronnie is now the "cover baby" on CIRM's annual report, which was praised by one lawmaker, Assemblyman Todd Gloria, D-San Diego. He said the report told the nearly 14-year, CIRM story in understandable and compelling language.

The full hearing can be seen here and downloaded. Kashyap's brief remarks begin at 55:36 into the video (he spoke without a prepared text). An audio file is also available at the same URL.

Here are links to the remarks at the hearing by CIRM CEO Maria Millan, CIRM Vice Chair Art Torres, patient advocate Don Reed, Jan Nolta, head of the UC Davis stem cell program, and David Jensen, publisher of this web site.

Article Postponed on Folsom baby and the Stem Cell Agency

Due to circumstances beyond the control of the California Stem Cell Report, the promised article on a legislative appearance by a Folsom father of an infant involved in a stem cell agency clinical trial has been delayed until Monday.

The father appeared at a legislative hearing earlier this month, along with his wife and child. The baby was afflicted with an immune deficiency disorder that would have been fatal. But he was treated in a clinical trial backed by the stem cell agency and is now healthy.

A Harsher Look at California's Stem Cell Program: No More Cash Without Changes

California's $3 billion stem cell experiment received a host of accolades last week at a state legislative hearing, but one strong, critical voice was not heard in the proceedings.

That came from the Biopolitical Times, a blog operated by the Center for Genetics and Society of Berkeley, a longtime foe of the agency. 

In a piece written by Pete Shanks, the agency was taken to task for a number of reasons. And he argued that it should not receive additional funds as it is presently constituted.

Shanks wrote, 

"At one time, CIRM had a deserved reputation for funding buildings , some of them at private universities, and was heavily criticized for that, but the $270 million “major facilities” budget approved in 2008 has all been spent. Some of the conflict of interest scandals are largely in the past, though ripples persist , and some of the institutional ones remain; several universities that receive large grants are still represented on the board . But there has been a new regime in place (“CIRM 2.0”) for several years.

"Things have improved, though not enough."

Shanks noted that the agency has failed to finance any therapies that are available for widespread use. He noted that the interest expense on state bonds that support the agency boost the cost to taxpayers to $6 billion from the $3 billion in awards.

He said the hearing last week was largely "a promotional vehicle." (Shanks' piece was published on Aug. 14, the day before the hearing by the Assembly Select Committee on Biotechnology.)

Shanks concluded:

"Going forward, there are two separate questions to consider: Is continued state funding of stem cell research at a rate of roughly half a billion dollars a year the best use of state funds?

"If it is, should those funds be spent through CIRM as it is presently constituted?
Is continued state funding of stem cell research at a rate of roughly half a billion dollars a year the best use of state funds? If it is, should those funds be spent through CIRM as it is presently constituted? 

"The first question is debatable; the second deserves a flat “No.” There is something obviously wrong when an agency is funded by public money but never has to submit a budget to the legislature, and can even go 13 years without appearing before an oversight committee. Two major reports, in 2009 by the Little Hoover Commission and in 2012 by the then Institute of Medicine (now part of the National Academies of Sciences, Engineering, and Medicine), both concluded that the governance structure of CIRM is seriously flawed."

A Before and After Story of $138 Million in California Stem Cell Cash

UC Davis graphics and captions

The head of the stem cell program at UC Davis says California is leading the way into a "new era of living medicine," thanks to the efforts of the $3 billion state stem cell agency.

Jan Nolta, the stem cell chief at Davis,  told the Assembly Select Committee on Biotechnology last week that the demise of the agency would lead to what some in her program are calling "cirm-amageddon," a play on the word armageddon and the initials of the stem cell agency's formal name..

The nearly 14-year-old agency is officially known as the California Institute for Regenerative Medicine (CIRM). It expects to run out of cash for new awards at the end of next year. CIRM is pinning its hopes for survival on yet-to-be-written ballot measure that would give it another $5 billion in state bonds if voters approve it in November 2020.

Nolta told lawmakers about the specialized facilities that are needed to deliver "living medicines" and highlighted the growth of the UC Davis stem cell program, which was virtually non-existent in 2004 when the agency was created.

Since then Davis has received $138 million from CIRM and has 24 stem cell trials underway "thanks to CIRM."

Nolta was lured to California after the passage of the ballot measure creating the agency. She said that the agency's programs have been a big draw for scientists from throughout the nation.

"If you want to do stem cells, this is where you come."

The full hearing can be seen here and downloaded. Nolta's remarks begin at 1:26:19 into the video (she spoke without a prepared text). An audio file is also available at the same URL.

Here are links to the remarks at the hearing by CIRM CEO Maria Millan, CIRM Vice Chair Art Torres, patient advocate Don Reed and David Jensen, publisher of this web site. Tomorrow the California Stem Cell Report will carry an item on the remarks of the father of an infant whose life was saved as the result of a clinical trial supported by CIRM. (This story has been postponed until Aug. 27.)