'Better Than Hope' to 'No More Cash Without Changes' -- Overviews of California's $3 Billion Stem Cell Program

Looking for a relatively quick, current overview of the activities of the $3 billion California stem cell agency?

You can find it here on the California Stem Cell Report with the links below to recent items growing out of a state legislative hearing.

CEO Millan Makes the Case for California's $3 Billion Stem Cell Research Program

The top executive at California $3 billion stem cell agency, which expects to run out of cash for new awards next year, outlined for state lawmakers last week the benefits of the nearly 14-year-old program.

California Stem Cell Agency Touts its Economic Impact on the Golden State

The California stem cell agency last week told its story to a state Assembly committee on biotechnology, including economic figures from a study financed by the agency itself. 

'Better Than Hope' -- An Advocate's View of California's $3 Billion Stem Cell Research Program

Longtime patient advocate Don Reed appealed to California lawmakers last week to support the state's stem cell research effort, which expects to run out of money for new awards at the end of next year.

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

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.

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

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.

California's Stem Cell 'Gold Rush:' Nearly 14 Years of Prospecting

A committee of the California Legislature today examined the state's $3 billion stem cell agency. Officials of the agency and others presented their perspective. Here is the text of prepared remarks by David Jensen, publisher of this blog, who appeared at the invitation of the Legislature. This is a third-party overview that deals with pluses, minuses and policy questions.

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.

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.)

'Better Than Hope' -- An Advocate's View of California's $3 Billion Stem Cell Research Program

Don Reed 

Longtime patient advocate Don Reed appealed to California lawmakers last week to support the state's stem cell research effort, which expects to run out of money for new awards at the end of next year.

He said,

"Today, thanks to the 7.2 million voters who authorized the California Institute for Regenerative Medicine, or CIRM, we have something better than hope; we have results, accomplishments, people made well—and a systematic way to fight chronic disease."

Reed was among the persons testifying last week before the state Assembly Select Committee on Biotechnology.

He  is vice president of Americans for Cures, a nonprofit group founded by Robert Klein, a real estate investment banker and who ran the ballot initiative campaign that created the $3 billion California stem cell agency. Klein was also the agency's first chairman and may lead another ballot initiative in November 2020 to renew the agency with an additional $5 billion.

Here are links to the remarks at the hearing by CIRM CEO Maria Millan, Art Torres, vice chairman of the CIRM board, and David Jensen, publisher of this web site.  Tomorrow the California Stem Cell Report will carry a look at the remarks by Jan Nolta, head of the stem cell program at UC Davis.  

The full hearing can be seen here and downloaded with closed captioning. An audio file is also available at the same URL. Here is the text of Reed's remarks.
(Some readers have reported that they cannot download Reed's comments shown below. However, I cannot detect any problem with that process. If you would like a PDF of Reed's remarks, please email me at djensen@Californiastemcellreport.com.)

   2018-08-15 Reed Assembly Biotech Hearing by DavidJensen on Scribd

California Stem Cell Agency Touts its Economic Impact on the Golden State

Art Torres at Assembly hearing last week

The California stem cell agency last week told its story to a state Assembly committee on biotechnology, including economic figures from a study financed by the agency itself. 

Art Torres, a former state legislator and now vice chairman of the agency's board, kicked off the proceedings Aug. 15 with a brief overview. He also said that agency-backed projects have "brought in over $2.7 billion in investments to those projects from other sources (industry partners, co-funding and additional follow-on funding such as non-CIRM grants or philanthropy."

Torres said the add-on funding was the product of the $2.6 billion that has been actually awarded during the nearly 14-year lifespan of the agency, known formally as the California Institute for Regenerative Medicine (CIRM). The agency was provided with $3 billion in state bond funding in 2004. Cash for new awards is expected to run out by the end of next year.

Here are links to the remarks at the hearing by CIRM CEO Maria Millan and David Jensen, publisher of this web site. Tomorrow the California Stem Cell Report will carry the text of remarks by Don Reed, a longstanding patient advocate for stem cell therapies. 

(Toda,y, Aug. 21, the stem cell agency reprinted Jensen's remarks on its blog, noting that "at CIRM we know that not everyone agrees with us all the time, or supports all the decisions" of the agency.) 

The full hearing can be seen here and downloaded with closed captioning. An audio file is also available at the same URL.

Here is the text of Torres' remarks.

   California stem cell agency: Testimony by Vice Chair Art Torres to state Assembly Biotech Committee 2018-08... by DavidJensen on Scribd

CEO Millan Makes the Case for California's $3 Billion Stem Cell Research Program

Maria Millan, CEO of CIRM, at state Assembly hearing last week

The top executive at California $3 billion stem cell agency, which expects to run out of cash for new awards next year, outlined for state lawmakers last week the benefits of the nearly 14-year-old program.

Maria Millan, president and chief executive officer of the California Institute for Regenerative Medicine (CIRM), as the agency is officially known, laid out how the agency funds "the most innovative, high risk but high reward" stem cell research in the state.

Millan highlighted some of the 49 clinical trials backed by CIRM. She said,

"Every single trial represents a tremendous breakthrough approach that was unimaginable and even the subject of science fiction just years ago."

She also discussed the agency's relationship with the stem cell industry in backing research during a risky financial stage called "the valley of death." She said,

"CIRM supports and de-risks through this stage, where industry and traditional investors are not yet ready to come in. By accelerating development and allowing these early stage trials to proceed with CIRM funding, we have enabled the projects to gain visibility and interest leading to an increase in industry investments."

Her presentation was generally well received by the five lawmakers who were in attendance at various times during the meeting of the Assembly Select Committee on Biotechnology, chaired by Kevin Mullin, D-San Mateo.

The full hearing can be seen here and downloaded with closed captioning. An audio file is also available at the same URL. Tomorrow the California Stem Cell Report will carry the text of remarks by Art Torres, vice chairman of the agency and a former state legislator.  This writer was also invited to appear at the session. My remarks can be found here.

Here is the full text of Millan's comments.
Remarks by Maria Millan, President of CIRM, To California Assembly's Select Committee on Biotechnology 2018... by DavidJensen on Scribd

California's Stem Cell 'Gold Rush:' Nearly 14 Years of Prospecting

A committee of the California Legislature today examined the state's $3 billion stem cell agency. Officials of the agency and others presented their perspective. Here is the text of prepared remarks by David Jensen, publisher of this blog, who appeared at the invitation of the Legislature.

(On Aug. 21, the stem cell agency reprinted the text below on its blog, noting that "at CIRM we know that not everyone agrees with us all the time, or supports all the decisions" of the agency.) 

   2018-08-15 Jensen Assembly Biotech Committee Testimony by DavidJensen on Scribd

California Lawmakers Schedule Update Next Week on the State's $3 Billion Stem Cell Agency

The parents of this child will be testifying next week at a state legislative hearing

For the first time in many years, a California state legislative committee is going to take a look at the state's $3 billion, 13-year-old stem cell research program.

An informational hearing is scheduled for next week, Aug. 15, by the Assembly 
Select Committee on Biotechnology, chaired by Kevin Mullin, D-San Mateo. His district includes a number of biotech firms. No legislation is up for action, and the hearing is not intended to necessarily lead to legislation.

Scheduled to appear before committee are Jonathan Thomas, chairman of the governing board of the agency, and Maria Millan, president and CEO of the agency, formally known as the California Institute for Regenerative Medicine (CIRM).  

The last time a CIRM CEO appeared before a state legislative committee was in 2005 when Zach Hall, then interim CEO testified. 

Also on tap is Jan Nolta, head of the stem cell program at UC Davis, which now stands as the No. 5 recipient of CIRM funds with $138 million. From Folsom will come a couple, Pawash Priyank and Upsana Thakur, whose infant child is now alive as the result of experimental research backed by the agency. The publisher of the California Stem Cell Report, David Jensen, is also scheduled to appear.

The stem cell agency is unique in California history and is a global leader in funding of stem cell research. It operates outside of the normal state budgetary process with its state bond funding flowing directly to it without the usual state budgetary oversight exercised by the governor and the legislature. That is all due to the ballot initiative that created the agency in 2004 and altered the state constitution.

The agency is scheduled to run out of cash next year. It is hoping that voters will approve $5 billion more for it in November 2020.

Next week's hearing, which will be in room 444 in the Capitol, will be available live on the Internet on the day of the  hearing via this page.  It will be archived as well and will be found via this link.

(To see the text of testimony at the hearing, search this blog on the term "assembly biotech hearing.")

(Editor's Note: An earlier version of this item misspelled the last name of Kevin Mullin.)