Former California Stem Cell Board Member Shestack Comments on the Agency's Record

Jonathan Shestack, a former member of the board of the California stem cell agency, was interviewed by telephone during the reporting for the 10th anniversary article today on the California stem cell agency.

Jonathan Shestack (left) and CIRM Chairman J.T. Thomas
at 2012 board meeting. CSCR photo

Shestack served on the board from 2004 until 2013. A Hollywood producer, he has been a longtime patient advocate for autism. He and his wife co-founded Cure Autism Now in 1995. Here is a link to Shestack's resignation letter from the board.

The 10th anniversary article was written by David Jensen, the publisher of this blog, and appeared in The Sacramento Bee.

Here is a summary of Shestack’s comments, which were trimmed from print article for space reasons.

He said, “CIRM has funded an amazing amount of great projects. It does an amazing amount of good.” He said, however, it should be “more bold going forward.”

Shestack was critical of the senior staff at the agency. He said they did “not like to do what the board wants.” He said, “The staff made a monkey out of the (10) patient advocates (on the board) for eight years.” There was no mechanism by which the board could pressure the staff on “programmatic” issues, he said.

Shestack said he was disappointed in the funding for research funding for autism. He said the agency wants to take credit for more funding on autism than is justified. He suggested that alternative grant-making proposals would been useful, such as creating a round for research on specific diseases.

Shestack was critical of the way in which grant rounds were handled. He said it led to “bloated proposals that people felt they had to approve.” He said the agency could have “more ruthless” on the “big disease” rounds and more willing to spend on basic research. “Ossified” is the way he described the grant-making process. During the review of grant applications, he said the staff “exerted a lot of pressure but in a passive-aggressive way.”

On conflict of interest issues, he said, “Trying to legislate away all conflict is a way to install permanent idiocy.”  Knowledgeable people in a small field such as stem cell research are nearly always going to have conflicts. He said the key is to manage them properly.

Shestack remarked on the impact of the state laws concerning open meetings. Compared to the private sector, they were “incredibly onerous” and made it difficult to do things, although he recognized they were necessary.

Shestack said the board is one of the best he has ever served on.  He said all the members were “pulling incredibly hard for the success of the agency. None of them had a hidden agenda.”

Shestack Resignation Letter: Heartfelt and Eloquent

Jon Shestack(l) with J.T. Thomas, chairman of
CIRM, at a 2012 board meeting
California Stem Cell Report photo

Patient advocate Jon Shestack , who resigned this week as a director of the California stem cell agency, was on board on Day One in December 2004 when the agency's work began with no offices, no desks, no chairs, no phones and no ability to even write checks.

Shestack's appointment came as a result of his work in the autism community. He and his wife, Portia Iversen, founded Cure Autism Now in 1995. A Hollywood film producer, Shestack rattled cages at CIRM from time to time during his eight years of service. And earlier this week, he wrote a heartfelt, eloquent resignation letter, which he provided to the California Stem Cell Report. The full text can be found below. Here are some excerpts.

“Over eight years there were moments that were inspiring, some were contentious, and there was a bruising number of meetings but through it all, the board was involved, passionate and, will forever be for me, the gold standard when it comes to integrity.
“The same goes double for the staff – truly the most excellent, devoted, committed group of people I have ever had the pleasure of working with.”

“When I started at CIRM, my sweet son with autism was 12. Now he is 21. Over eight years our family has learned more about how many are the challenges that await him and how few the opportunities he has to look forward to. We have seen his world get smaller and smaller. While my son is special to me. He is not unique. There are thousands and thousands affected by mental illness who need a better life.
“Sometimes feel that I have failed these people, in particular those affected by autism or cerebral palsy. Though CIRM ran first-rate workshops on these disorders, we did not do all we could to follow up, put out disease-specific RFAs and get in proposals that addressed the workshop recommendations. I wish I had been more persuasive."

“In the movies, the third act is where the hero takes stock of all the previous wins and losses, all the hardships and lessons learned, and she puts all that knowledge together in new, and surprising ways until victory is within reach! As CIRM enters its third act, I hope it will do the same. I hope it will challenge itself, always put the urgency of the mission ahead of everything else and be willing to question the policies that have been so successful in the past, and consider that new ones may be needed for the future.
“And this is the future as I see it for CIRM. We will have faith, but we will continue to earn our miracles We will use our hearts and our minds to rip those miracles out of the dreamy future and make them real today. We will seek out the best scientists and encourage them to use all their wisdom, art and discernment to bring us cures. And when we have done that, we will do it again the next day. We will be optimistic, but not satisfied. We will question authority, despise complacency and above all love those among us in need of healing--this is the obligation without end, whose reward is also without end.”

Shestack Resignation Letter

Sacramento Mental Health Advocate Appointed to Stem Cell Agency Board

Al Rowlett
Turning Point photo

Sacramento mental health advocate Al Rowlett has been named to the governing board of the $3 billion California stem cell agency, it was announced today.

Rowlett replaces Jonathan Shestack on the 29-member panel. Shestack had served on the board since 2004, when the agency was created by the Proposition 71 ballot initiative.

Rowlett is chief operating officer of Turning Point Community Programs in Sacramento. He was appointed to the CIRM board by California Assembly Speaker John Perez, D-Los Angeles. Rowlett will fill one of the 10 patient advocate slots on the board. He will be only African-American on the panel. The board had also included one African-American, Ted Love, from 2004 to April 2012, when Love resigned.

Rowlett is no stranger to public and governmental service. He is in his second term as a member of the Elk Grove school board, the fifth largest school district in California. He has worked for Turning Point since 1981.

CIRM's press release said Rowlett also serves on several other boards including Child Abuse Prevention Center, California Institute of Mental Health and is a commissioner for the United States Psychiatric Rehabilitation Association Certification Program. In 2007, Rowlett won the National Association of Social Work- California and California State University – Heart of Social Work Award and the Asian Pacific Community Counseling – Inspirational Mental Health Leadership Award.

Appeals at the California Stem Cell Agency: Worthwhile or Worthless?

Jon Shestack, a patient advocate member of the governing board of the California stem cell agency, weighed in today on the virtues of the grant application appeal process at the $3 billion research enterprise.

His remarks came in a “comment” filed on the Duchenne item that appeared yesterday on this site. (His full comment can be found at the end of that item.)

Shestack said that the handling of the $6 million CIRM grant involving Duchenne research is “a casebook study on why the special(extraordinary) petition is worthwhile. There was indeed new and relevant information that only became available after grant review. Scientific staff and leadership flagged it.”

The utility of the petitions is one of the reasons that we ran the story about Duchenne and the team at UCLA. The extraordinary petition process is currently under fire by both the Institute of Medicine and the stem cell agency itself, which has appointed a task force to come up with changes. But, while the petition process is certainly less than perfect, so is the peer review/grant review process.

The Duchenne application is not the only “case study.” An application by Karen Aboody of the City of Hope is often cited as another case. There are undoubtedly others.

The petition process was adopted several years ago by the board as a tool to manage willy-nilly appearances of scientists before the CIRM governing board whose applications were rejected by reviewers. Now the Institute of Medicine has recommended the petitions be abandoned, saying they undermine the integrity of grant review process. The IOM cited a major controversy in Texas involving its cancer research agency as an example of how grant reviews or the lack of them can go bad – not to mention conflict of interest problems there. CIRM has already started to look for better solutions regarding appeals. Many of its directors are troubled by emotional presentations from patients in connection with petitions and the lack of adequate information to make informed decisions on the spot about the contested matters.

Whether appeals can be put in a tidy, scientific box is debatable. Researchers have the right, under state law, to address the board on any issue whatsoever. And at least some of them will continue to do so -- regardless of any appeals changes --  when millions of dollars and their careers are at stake.

Opinions and decisions of CIRM reviewers are not holy writ. They can and do make mistakes, as we all do. In making changes in the appeals process, the goal of the agency should be to devise a public and transparent process rather than enshroud it in more secrecy. CIRM also should find a way to do a much better job of communicating to applicants the availability of appeals and precisely how to appeal when it becomes necessary.   

Shestack's Words Stir Ire in York

One of the directors of the California stem cell agency has become embroiled in a flap about billboards in a small Pennsylvania town better known for making Harleys and animal crackers than for scientific research.

The director is Jonathan Shestack, a nationally known autism patient advocate and Hollywood film producer (Air Force One). The town is York, home to a motorcycle factory and the Stauffer Biscuit Co.

The matter involves a quotation from Shestack, who has been known to speak his mind at CIRM board meetings. In this case, Shestack's 16 words were emblazoned in yellow on a billboard on Route 30. He said,

"If 1 in 150 American children were kidnapped we'd have a national emergency. We do. Autism."

Jeff Frantz of the York Daily Record wrote,

"The Autism Self Advocacy Network and several autism bloggers from around the country objected to the billboard, saying the quote equated an autism diagnosis with a lifetime prison sentence. "

Frantz also reported,

"'You know what, I stand by it all,' Shestack said. 'It is a phrase to grab people by the throat.'

“Those objectors are often people with high-functioning autism, he said. They ignore half of those with autism like his son, who will never learn to speak and will always need help with basic tasks.

"'I think the people who object are small-minded, not generous and only see the world through their own experience,' Shestack said.”

We agree with Shestack.

But the Autism York group, which put the billboard, is not buying Shestack's view and is taking the sign down.