Tuesday, January 14, 2014

Nine Years on the California Stem Trail: A Look Behind the Curtain

Back in November 2004, the re-election of President George Bush dominated the news throughout the nation. But out in California, there was talk of a new gold rush, triggered by a measure buried deep on the ballot that month.

The latter-day argonauts were not expected, however, to be scratching out nuggets. Instead they would be fiddling with stem cells, particularly human embryonic stem cells. It all looked like big bucks for the biotech industry -- $3 billion from a new state agency.

That was when the idea for this blog began to percolate. A few weeks later -- nine years ago this month  -- the first item appeared on the California Stem Cell Report. It now seems a likely occasion to reflect on the scope and purpose of what appears here and to discuss readership and other matters.

David Jensen
Editor California Stem Cell Report
First, to answer an oft-heard question: Why am I am writing about this particular agency, formally known as the California Institute for Regenerative Medicine(CIRM)? The simple answer is that it is interesting, at least to some, and important. The agency – created by Proposition 71 of 2004 – is an exceptional and unprecedented state effort. Nothing like it has existed in
California history. It operates with unusual autonomy. The governor and the legislature cannot touch its funding or direct its research. It survives on $3 billion borrowed by the state, which will roughly double the cost of the research to $6 billion or so because of the interest on the borrowing. It also marks another first with its use of California state debt to pay for scientific research.

At one point, CIRM was the world's largest single source of funding for human embryonic stem cell research. The agency has lured top researchers from other states and countries. And it represents a unique mash-up of government, politics, big business, big science, big academia, morality, ethics, life and death and even sex.

Since 2005, the California Stem Cell Report has been read by researchers, policy makers and other interested parties around the world. They log in from Singapore and Great Britain, Canada and Korea as well as institutions ranging from the NIH and Harvard to Stanford, UC San Francisco, Scripps and Sanford Burnham and more.

I estimate that only a few thousand persons around the world are deeply interested on a regular basis in stem cell research, making the potential audience for this Web site rather small. But Google reports that as of today 729,841 page views have been registered during the life of the blog. (I have posted 3,608 items.) Last month, which was slow because of the holiday, the California Stem Cell Report chalked up 16,878 page views, which are the basic Internet standard for measuring readership.

The items that seem to grab the most attention involve individuals as opposed to the nuts and bolts of either science or policy. When CIRM directors considered election of a new chairman in 2011, readership jumped. Machinations involving selection of new presidents at the agency draw readers. Of course, reports about dubious activities or problems also are of significant interest. The lure of stories about people nonetheless is not much different than seen in the mainstream media, based on my 35 or so years in the news business.

Another matter that has drawn an extraordinary amount of interest involves money: specifically the expected cost of stem cell therapies. In 2010, I posted on Scribd a study financed by CIRM -- one that the agency was not trumpeting -- that examined the issue of costs. Since then, it has been read 14,096 times, the most of any document that I have posted on the Scribd service, which provides a way to mount documents and link to them via the blog.

In its initial years, the blog primarily surveyed California media reporting on the stem cell agency, providing links and commentary with some original reporting. But today the focus is mostly on original reporting with analysis and commentary. The agency and its doings have slipped off the radar of the mainstream media, where they probably will remain short of a major scandal or a massive PR effort by the agency.

One of my goals was to provide detailed information, news and analysis about California's unusual research effort – far more than could be done by print media. The idea was to exploit one of the unique characteristics of the Internet-- the capability of publishing nearly unlimited amounts of information. Newspapers constantly cut, squeeze and trim stories because of both cost and their desire to publish a large number of articles about many different subjects. With the Internet, there is virtually no limit on the amount of content, a feature that is both good and not-so-good. Another goal was to go beyond the official handouts and to provide a guide to where useful information can be found.

The California Stem Cell Report differs from the mainstream media in another regard. The blog carries the remarks of representatives of the agency and other interested parties VERBATIM, even when they sometimes involve harsh attacks on the conduct of the blog. Major media almost never allow such access.

I have a couple of biases that underpin what I do. One is the assumption that it is beneficial generally for the government to fund scientific research. The other and more important principle is that government agencies should operate with maximum openness and transparency and that their first obligation is to the people – not the researchers that they fund or the institutions that have something at stake.

While readers can judge for themselves the success of the blog, the scope of the readership from the NIH to California's biotech hot spots suggests it is well-received. Mainstream media reporters as well as science writers often use the California Stem Cell Report as a reference and starting point. The blog has also served as a springboard for acceptance of my own occasional freelance articles in such places as The Sacramento Bee and Wired News. And in 2012, I testified before the Institute of Medicine, at its invitation, during preparation of its $700,000 report on the stem cell agency.

As for how the work is done, the writing and reporting are performed largely from a sailboat in Mexico and Central America, on which my wife and I live full-time. Sometimes that has presented difficulties, but as cellphone and Internet service has improved over the years, the task has become easier. We make visits back to California regularly during which I meet with agency officials and others and attend CIRM's public meetings.

I have focused largely on the policy and business aspects of the agency because that is where my knowledge and background lies. During my career, I have covered and edited stories from the state Capitol for United Press International and spent 10 years as the business editor of The Sacramento Bee along with editing prize-winning investigative projects, including the 1992 Pulitzer Prize-winning series, “The Monkey Wars,” by Deborah Blum, who now teaches at the University of Wisconsin. I also served two years and one week with Jerry Brown during his 1974 campaign for governor and into his first term.

As for my financial interests, my wife and I have never had any investments in any enterprise that could benefit financially from the activities of the stem cell agency except for possibly through index-based mutual funds over which I have no control. But like most of world, my family has suffered from conditions that theoretically could benefit from development of stem cell therapies. 

I am always interested in thoughts and comments from readers, critical or otherwise. My skin is reasonably thick. I have always told reporters who have worked for me that if you perform your act in a public place you should be prepared for any sort of reaction. I welcome suggestions for stories and improvements.

Feel free to contact me at djensen@californiastemcell.com. Or if you prefer to withhold your identity, you can leave a comment anonymously via the “comment” function at the end of each item.  
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11 comments:

  1. Deanna Hanson8:14 AM

    Dave, I would be interested in seeing an article that provides results of work completed or underway that is or has been funded by the Prop 71 10 years ago. Has there been significant progress on any specific health issues? Has it progressed to treatments and trials? By whom? Simply put, have 10 years and $3 billion produced resuts?

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    1. Thanks for the suggestion, Deanna. The short answer is that CIRM funding has not produced a commercial treatment. Some early stage clinical trials are underway but it will be years before a product emerges, if ever. But the topic bears a broader look.

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    2. Anonymous1:49 PM

      Lots of good results, though. Considering the usual timeline for discovery through the standard FDA approval process, it would be a miracle if we had a commercially available treatment now (especially since lawsuits held up funding for a couple years). We will know in a couple years if some of the trials are looking promising, though.

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  2. Thanks for doing a dynamite job of monitoring CIRM, David. You are the ONLY one doing it regularly and with credibility. You've helped make the agency stronger and more accountable. Without you, the outside world might not know the wonderful (and occasionally questionable) things the agency is doing.

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    1. Thanks for the kind words, Jeff.

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  3. Anonymous1:35 PM

    Dave - Thanks for this, but after all this time and $3 billion dollars I don't see the promised cures, patient treatments, abundant clinical trials, etc. If you consider funding researchers progress and some of them getting quite wealthy it would appear, then I guess you could call that progress. It's time that research turned into practical solutions for patients seeking experimental stem cell therapy. This wasn't supposed to be a jobs program for scientists.

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  4. Several priorities were at work in the support for Proposition 71, including jobs for researchers, but the paramount public goal was development of cures. Those cures have not yet emerged and may not for years. However, science is slow business with advances and setbacks and detours. Most reasonable people would agree that the agency has made a significant contribution to stem cell science. Whether it is worth $6 billion, including interest, is another question.

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  5. David:
    It's a rare day that I don't check out your blog, but I seem to have skipped a couple of days…so belated good wishes and heartfelt thanks!! …for keeping us informed, for helping to make CIRM transparent to us, for reminding us of our place in the world.
    When colleagues ask me why I attend ICOC meetings, I ask them, "if you could attend the NIH Council meetings where your grants get thumbs up or down, wouldn't you?" I think you and I met at an ICOC meeting.

    Please, for our sake, keep it up--from Panama or Mexico or wherever you are!
    Jeanne

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  6. Hey Dave, thanks for keeping an eye on this agency, which I think could help not only mankind, but California, too. I get a daily news feed from them and remember reading something about diabetes patients getting their first stem cell treatment just a couple weeks ago in a first phase trial in San Diego last week from Viacyte, a company CIRM funded. And there was also something earlier about patients receiving 2nd phase clinical trial for heart regeneration at Cedars Sinai and some
    HIV patients getting stem cell treatment in second phase at city of hope. Probably worth a mention or just too unlikely to succeed to put in the story?
    And according to one guy I know who works there, there are 10 CIRM funded disease-related therapies heading toward trials. Hope he's right. I'm getting to that age where I may be needing a new something before long! Happy sailing.

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    1. Re the trials mentioned by Milt Whaley, they are among the 10 underway as reported in The Bee yesterday. But, but as noted, the odds for treatments entering clinical trials and then emerging as a commercial product is roughly one in 10, based on a study published earlier this year. And that is for conventional therapies, not stem cell treatments that are new to regulators. I have written about both the ViaCyte and Capricor (Cedars) work in the past along with the agency's HIV awards. The trials have generated great interest but there is also a great deal of more work to be done. Like almost everyone else, I hope that this research pays off. At the same time, the program merits rigorous evaluation. Thanks for your comments, Milt. Good to hear from you. (A disclosure: Milt and I both worked at the Sacramento Bee back in the 1990s.)

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  7. Anonymous2:23 PM

    David, why are you focused exclusively on successful commercial products? Many stem cell therapies will be more like bone marrow transplants-- delivered in medical centers, with no direct company involvement. Thousands of lives are saved each year, and bone marrow transplants are not a commercial product. Similarly, the therapy Dr. Don Kohn is developing at UCLA for SCID, which has saved 18 children so far, is not sponsored by a company. The idea is to save lives, not create companies.

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