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Category Archives: Stem Cell Therapy

Stem Cell Agency Board Member Defends Independence of Many on Board

Posted: February 7, 2013 at 4:40 pm

A member of the governing board of the
California stem cell agency is taking exception to a statement on the
California Stem Cell Report that no independent members sit on that
body.

Francisco Prieto, a Sacramento
physician and a patient advocate member of the board, referred to the
“ethical minefield” item Feb. 5, 2013. Here is the text of what
Prieto wrote,

“I have to object to this line: 'None
of the current members are independent. The ballot measure that
created the agency required board members to be appointed from
various constituencies.' 

“I think I am absolutely independent,
and I think the same applies at the very least to most if not all of
my fellow patient advocates, and probably to the biotech
representatives as well – remember that they all must come from
companies that are not involved in stem cell research.  Although
I supported the proposition, I was not involved directly in the
campaign in any way, and I did not meet Bob Klein (the first chairman of the stem cell board) or any of my fellow
board members until the day I was sworn in at our first meeting.

“The Prop. 71 language I believe
specifies that advocates must have a record of advocating for people
with the disease or diseases they represent, and not that they belong
to or work for any specific organization.  Checking my binder,
it refers to 'groups' but does not specify those – for example, it
refers to 'representative of a California regional, state or national
HIV/AIDS disease advocacy group.' I’m not sure how you would
define 'independent' but I certainly don’t think it means
'disinterested.'”

Our take: The Institute of Medicine(IOM) called for a new majority of what it described as independent
members, obviously not finding sufficient, if any, independent
members on the agency board. The IOM, the most prestigious organization of
its kind in the country, said changes were needed because of damaging
conflict of interest issues at the stem cell agency.
Prop. 71, which created the stem cell
agency in 2004, was carefully crafted to avoid the use of the word
“independent” when describing the necessary qualifications for a
board member.
 Instead the measure required that, in some cases, they
must come from very specific education institutions. (You can find the CIRM summary of all qualifications within this document.) In other cases, the speaker of the
state Assembly appoints “one representative of a California
regional, state, or national mental health disease advocacy group.”
The leader of the state Senate appoints “one representative of a
California regional, state, or national HIV/AIDS disease advocacy
group. “ Four other statewide elected officials appoint an
executive from a “California life science commercial entity.”
Prieto is correct when he says he
believes he is “absolutely independent.” But he fills a category
that represents a special constituency. What is missing from the
board is anyone who does not come from one special constituency or
another. The board was constructed in that manner to make sure it
would win the broadest measure of support from all the various major
constituencies by guaranteeing them a seat at the table where the
money is handed out.  Ironically, the full formal name of the CIRM governing board is the "Independent Citizens Oversight Committee," a piece of political legerdemain to mask the actual nature of who would sit on the board. 

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/1YDDznoTw4E/stem-cell-agency-board-member-defends.html

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Riverside Newspaper: 'Ethical Minefield' Still Not Cleared at Stem Cell Agency

Posted: February 5, 2013 at 4:21 pm

The California stem cell agency's
attempts to deal with the conflict of interest problems at the $3
billion research program amount to a minor fix that is not a “serious solution,” the Riverside Press-Enterprise editorialized yesterday.

The editorial came as the agency
launches a road trip campaign to convince newspaper editorial boards around
the state that the agency is worthy of continued financial support.
The agency will run out of money for new grants in less than four
years.
The Riverside editorial pointed to the blue-ribbon Institute of Medicine report in December that called for creation of a
new, independent majority on the 29-member board. None of the current
members are independent. The ballot measure that created the
agency required board members to be appointed from various
constituencies.
The newspaper said,

“That arrangement is hardly a model
of objective decision making. The agency so far has distributed about
$1.7 billion in grants, with about 90 percent of that money going to
institutions represented on the governing board. 

“Voluntary abstentions are not a
serious solution to that ethical minefield. Nor would that approach
eliminate potential conflicts, because the agency would still allow
the abstaining members to take part in the discussions and debate
about who should get the grants. 

“The Institute of Medicine instead
recommended remaking the board with truly independent members who
have no stake in grant awards. The stem-cell agency rejected that
step because it would require changing Prop. 71, either through a
super-majority in the Legislature or another ballot measure. That
excuse should be a vivid warning to Californians about the dangers of
passing complex, costly and inflexible initiatives. 

“Agencies handling billions of
taxpayers’ dollars should not avoid good government practice or
basic fiscal safeguards. The stem-cell institute offers minor fixes
when it needs substantial changes — and legislators should not
accept that cavalier approach.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/VQ9QZ0E814c/riverside-newspaper-ethical-minefield.html

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Debunking California Stem Cell Agency Claims of 'No Actual Conflicts'

Posted: February 4, 2013 at 1:08 pm

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Los Angeles Times Columnist: Stem Cell Agency Still Saddled with Conflict of Interest Problems

Posted: February 3, 2013 at 8:11 am

The governing board of the $3 billion
California stem cell agency will remain dominated by “special
interests” even with the adoption of a plan last week responding to
the far-reaching recommendations of a blue-ribbon Institute of
Medicine (IOM) study, a columnist for the Los Angeles Times said today.

Michael Hiltzik, Pulitzer Prize winning
writer and author, wrote that IOM study showed the agency “the path
to cleansing itself of its aura of connivance and influence trading.
That the board can't even bring itself to place the proposals before
the voters or their elected representatives only shows how much money
it's willing to waste to keep living in its own little world.”
Hiltzik's column in California'slargest circulation newspaper included fresh comments from both
Harold Shapiro, who chaired 17-month IOM study, which was
commissioned by CIRM, and Jonathan Thomas, the chairman of CIRM and
who drew up the response.
Hiltzik wrote that the study “concluded
that the CIRM board members were saddled with 'almost unavoidable
conflicts of interest, whether actual or perceived.'” He continued,

“That's because by law, 23 of the 29
members must be representatives of California institutions eligible
for CIRM grants or of disease advocacy groups with their own interest
in steering money toward their particular concerns. 

“As a remedy, the panel proposed
eliminating some board slots reserved for grant-receiving
institutions by Proposition
71, the 2004 initiative that created the agency. The idea
was to fill those slots with truly independent members free of any
stake in CIRM funding, even indirectly.”

 Hiltzik wrote,

 "Thomas told me his proposal dealt
with even perceived conflicts of interest on the board in such
"definitive fashion" that it won't be necessary to bother
the Legislature, much less the voters, with such big changes as
remaking the board with a majority of independent members. He pointed
out, not without some pride, that one board member called his
proposed changes 'draconian.'"

Hiltzik had some praise for Thomas.

“Let's stipulate that Thomas has, in
CIRM terms, moved a mountain by jostling the board even this far.
Since its inception, the board has set records for arrogance. That's
a direct legacy from Proposition 71, which exempted the stem cell
program, uniquely among California government bodies, from any
practical oversight by the Legislature or elected officials.”

The Times columnist continued,

“Shapiro told me from his Princeton
office that Thomas' proposals were 'a significant step in the right
direction, which at least indicates that they haven't ignored the
report.' But he doesn't share Thomas' view that voluntary recusals
solve the conflict of interest problem. That can be done, Shapiro
said, only by replacing stake-holding board members with
independents.

"'The more you can reduce the
inherent conflicts, the better off everyone is going to be,' he said.
The board will 'have to go further over time, in my view.'"

Hiltzik wrote,

“The Shapiro panel said it didn't
find any instances of inappropriate behavior by board members or
specific conflicts, but there are two reasons for that: It didn't
search for any, and Proposition 71 defined certain conflicts out of
existence. The measure states that it's no conflict for a board
member to also be an officer of an academic institution or private
corporation that might be applying for grants.

“One of the CIRM board's enduring
self-delusions is that its conflicts of interest are purely a matter
of 'perception.' But there have been documented instances
of favoritism shown to well-connected grant or loan applicants, and
at least one overt attempt by a board member to overturn a rejection
of his institution's project. So much of the board's discussion takes
place behind closed doors or informally that the opportunities for
mutual back scratching are incalculable.

“Thomas' 'draconian' proposals won't
change this state of affairs. Special interests will still dominate
the board. Will barring 13 members from voting on grants while giving
them full rein to participate in discussions really eradicate even
the perception of conflicts? You'd have to be terminally naive to
think so.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/I_jSJSpM3nU/los-angeles-times-columnist-stem-cell.html

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Hyping the Economic Impact of the California Stem Cell Agency

Posted: February 3, 2013 at 8:11 am

The $3 billion California stem cell agency today served up a warmed-over version of a study that would have the
public believe that the research program has had a major economic
impact on the state.

The latest study was prepared last
August by a firm that was hired under an RFP in 2010 that said it must execute "a vibrant and aggressive strategy to support the goals and initiatives of CIRM.” 
The agency paid $300,000 for the
original study but contends the report is “independent” of CIRM.
According to the CIRM press release
today, the latest version of the study by Jose Alberro of the
Berkeley Research Group claims creation of 38,000 “job years” and
$286 million in “new tax revenue” from the award of $1.5 billion. Those awards actually cost something in the neighborhood of $3 billion, given that state taxpayers must pay interest the borrowed funds that finance the agency. 
The Institute of Medicine's recent
blue-ribbon report on the stem cell agency carried remarkably different
information than the economic figures reported today. The institute's study was also financed by CIRM but at a cost of
$700,000. The report said,

“In the short term, CIRM’s
expenditures are supporting approximately 3,400 jobs and their
innovative efforts have also attracted substantial additional private
and institutional resources to this research arena in California
CIRM’s long-term impact on such critical aspects of the California
economy as state tax revenues and health care costs beyond the
shorter-term and temporary impact of its direct expenditures cannot
be reliably estimated at this point in CIRM’s history."

Here is what the California Stem Cell Report wrote in 2011 when the first study was released:

“No doubt exists that the stem cell
spending has had a beneficial economic impact. But whether it has had
a 'significant' impact on the California economy is in the eye of the
beholder. The state's economy runs to something like $1.7 trillion a
year. If California were a nation, it would rank among one of the
larger economies in the world. The workforce totals around 18
million, making 25,000 jobs statistically less than a hiccup. Keep in
mind as well that CIRM, until 2009,  paid the interest on its
borrowing with more borrowed funds, all of which adds to the total
cost of the borrowing, which is about $3 billion on top of the $3
billion CIRM is handing out.”

By ballyhooing economic impact reports
the stem cell agency would seem to be inviting assessment of its
efforts as an industrial development enterprise, which involve
criteria significantly different than that of a research enterprise.
A few years ago, we asked the agency's then Chairman Robert Klein
whether he wanted to have CIRM assessed as industrial development
effort. His quick response was a very emphatic no. Klein nonetheless
frequently touted the figures produced under the contract with the
agency.
The latest figures are undoubtedly
likely to be cited as the agency begins a road trip around the state
to meet with newspaper editorial boards to trumpet CIRM's reponse to
the Institute of Medicine study.
See below for a full copy of the
report. We have asked CIRM for a copy of the contract with the group
that prepared it. We will carry it when we receive it.
   

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/l9y8li36Cn8/hyping-economic-impact-of-california.html

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Sacramento Bee: Stem Cell Agency Falling Short on IOM Recommendations

Posted: February 3, 2013 at 8:11 am

It's exceedingly rare when the
California stem cell agency makes the front page of any newspaper.

So it is worthy of note that The
Sacramento Bee this morning carried a lengthy piece on its page one
about the agency and its response to the blue-ribbon Institute of
Medicine (IOM) report.
The headline said,

 “Analyst: Stem
cell agency reforms fall short.”

The analyst is the Institute of
Medicine, more specifically Harold Shapiro, chairman of the panel that
studied California's $3 billion research effort for 17 months at
a cost of $700,000 to the agency.
Bee reporter Cynthia Craft wrote that
Shapiro said the stem cell agency is “falling short” in its
response to the IOM recommendation.
Craft wrote,

"'There certainly is a gap between
what we recommended and what they responded with,' said Shapiro,
president emeritus at Princeton
University. ' I wish they had moved closer to our
recommendations.'"

Craft said the IOM made sweeping recommendations “emphasizing the need for new blood on a governing
board that has been plagued by the appearance of conflicts of
interest, cronyism and sluggishness in getting stem-cell products to
market.”
Craft also interviewed Jonathan
Thomas, chairman of the stem cell agency, who said some of the IOM
recommendations would take legislative action. But Thomas said that
was “out of the question.”
Craft wrote,

“The process would take years, he
said. The first opportunity to get on the ballot, for instance, would
be in the fall of 2014.”

The agency will run out of cash for new
grants in less than four years.
Craft's story was the first major news
article in years about the agency in the Bee, the only daily
newspaper in the state's capital. She reviewed a bit of the history
of the agency and concerns about conflicts of interest. She
concluded,

“Shapiro said he stands firmly behind
his committee's report. 

"'I think our recommendations sit
together and interrelate to each other well – and should have been
moved along as quickly as possible,' Shapiro said. 

"'It might have been helpful if
they indicated to us what they were willing to do and what they
weren't,' he said."

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/tEEJz8_Jcds/sacramento-bee-stem-cell-agency-falling.html

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Stem Cell Agency Plan Falls Far Short of Solving IOM Concerns

Posted: February 3, 2013 at 8:11 am

The governing board of the $3 billion
California stem cell agency last week fell far short of complying
with the recommendations of a blue-ribbon Institute of Medicine (IOM) study
that the agency itself commissioned to improve its performance.

Many of the proposals by the IOM dealt
with conflicts of interest at the eight-year-old agency, which board members
reluctantly recognized on Wednesday as a perception problem. Under the plan approved last week, 13 of the 29 members of the board would not be allowed to vote on any awards. They are members tied to institutions that benefit from funding. Three other board members linked to those beneficiary
institutions, however, would still be allowed to vote on grants other than
those to their institutions. .
The board did nothing to deal with the
structural issues involving conflicts of interest that are built into
the board as the result of Prop. 71, the ballot measure that created the research
effort in 2004. The 29-member board was constituted in such a way as
to give nearly all institutions that could benefit a seat at the
table where the money is handed out. It is as if the state's Public
Utility Commission, which sets utility rates, were dominated by
executives of the utility companies.
Under longstanding rules, individual members of the stem
cell board are barred from voting on grants to their institutions. However, the board still determines the game and the rules. The board approves the
specific areas of research for funding, approves plans for individual
RFAS, sets the rules for the grants and loans and enforces compliance
through CIRM staff.
The board last week limited itself to
changes that it could enact on its own. Many of the IOM
recommendations, including a new majority of independent members,
would require legislative action, which opens the agency to a wider
range of changes than even the IOM recommended. That is not a prospect the agency relishes. Nonetheless,
how well the board complies with the IOM recommendations is likely to
be critical to its plans to raise funds to continue its operations
beyond 2017, when the taxpayer cash runs out for new grants.
Here is a look at the key IOM recommendations and the response so far from the stem cell agency(see here and here).
More details may emerge between now the next CIRM board meeting in
the San Francisco Bay Area March 19, when the board is schedule to finalize its IOM plan. 
IOM Recommendation
“Change the Composition and Structure
of the Board and Working Groups.
“CIRM should put systems in place to
restructure the board to have a majority of independent members,
without increasing the size of the board. It should include
representatives of the diverse constituencies with interests in stem
cell research, but no institution or organization should be
guaranteed a seat on the board. Consideration should be given to
adding members from the business community....The chair and other
ICOC members should be prohibited from serving on the working groups.
During the reconstitution of the working groups, the current level of
representation of disease advocates should be maintained, such board
members being replaced with other disease advocates who are not board
members.”
CIRM Response
The Thomas plan basically is a total
rejection of this recommendation. The CIRM board does not support
creation of a new majority of independent members, which would mean
some current members would lose their seats if the board were not
increased beyond 29 members. No members will be added from industry.
Board members will continue to serve on the grant review panel and
other groups, contrary to IOM recommendations. In the case of grant
reviews, however, they would no longer vote in the closed door
sessions. The board has no plans to add patient advocates who are not
board members to working groups, including the grant review panel.
The University of California will continue to have five guaranteed
seats on the board. No independent members currently sit on the
board.
IOM Recommendation
“Revise Conflict of Interest
Definitions and Policies.
“CIRM should revise its definitions
of conflict of interest to recognize conflicts arising from
nonfinancial interests, such as the potential for conflict arising
from an individual’s interest in a specific disease, and should
reassess its policies for managing conflict of interest in light of
this broader definition.”
CIRM Response
CIRM has no plans to move to prevent
nonfinancial conflicts of interest. Several board members expressed
strong opposition to such an effort. Sixteen persons who sit on the
board have ties to institutions that receive CIRM funds. Currently
individual board members cannot vote on applications from their
institutions. To avoid the appearance of conflicts of interest, the
Thomas plan would have the 13 members directly appointed from
beneficiary institutions voluntarily abstain from voting on any grant
applications. Apparently not affected under the Thomas plan would be
three other board members who are appointed as patient advocates. Two
of them are employed by beneficiary institutions. The third is
chairwoman of the UC Board of Regents. All of the board members would
continue to vote on plans for all rounds of grants, including
determination of some of the specifics of the ensuing RFAs.
IOM Recommendation
“Restructure the Grant Review and
Funding Process.
“CIRM should restructure the grant
review and funding process to separate oversight and strategic
planning from day-to-day operations. The ICOC (the agency's governing
board) should remain responsible for oversight and articulation of an
overall strategic plan. However, grant management, funding
recommendations, and grant administration should be the
responsibility of the CIRM scientific staff, reporting to the
president. This restructuring would help mitigate concerns related to
conflicts of interest and would also put the review and funding
process in the hands of those best equipped to make those decisions.”
CIRM Response
CIRM patient advocate board members who
serve on the grant review group would not vote on applications during
the grant review sessions. They would be limited to voting at public
board meetings. They would lead discussion of non-scientific
considerations for approval of applications during the public
sessions. Currently that occurs during the closed door review.
IOM Recommendation
Abolish the “extraordinary petition”
mechanism for public appeals of negative grant reviews.
CIRM Response
Move all appeals to staff level and
behind closed doors. Currently extraordinary petitions are handled in
public board meetings, sometimes leading to lengthy, emotional
sessions with presentations by patient advocates. The public in
general, including grant applicants, continues to have the right
under state law to address the board on grant applications or any
other matter they wish.
IOM Recommendation
“Separate Operations from Oversight.
“The board should focus on strategic
planning, oversee financial performance and legal compliance, assess
the performance of the president and the board, and develop a plan
for transitioning CIRM to sustainability. The board should oversee
senior management but should not be involved in day-to-day
management. The chair and the board
should delegate day-to-day management responsibilities to the
president. Each of the three working groups should report to
management rather than to the ICOC.”
CIRM Response
The Thomas plan does not appear to
differ significantly from current operations, which reflect the
troubling dual executive arrangement involving the chairman and
president that was created by Prop. 71, the ballot measure that
created CIRM. The existing arrangement is also a hangover from the
days of the agency's first chairman, Robert Klein, and has been an
obstacle in previous recruitment efforts for a president of the
agency. The Thomas plan does eliminate a dual reporting arrangement
for the chief financial officer, a position that has been vacant
since last summer. Thomas indicated last fall that the position would
not be filled. Both the chairman of the IOM study panel and the
California state controller's office both say more needs to be done
to separate operations from oversight.
IOM Recommendation
“Enhance Industry Representation in
Key Aspects of CIRM Organization.
“Industry representation on the ICOC,
the Scientific Advisory Board, the Standards Working Group, and the
Grants Working Group should be enhanced to leverage industry’s
expertise and resources in product development, manufacturing, and
regulatory approval in support of the ultimate goal of bringing
therapies to patients.”
CIRM Response
The Thomas plan would increase industry
involvement “where appropriate.” However, industry has complained
for years about this problem, and some board members as well. But
little has been done to deal with the problem. Recently, the agency
has taken some steps to engage industry, but the IOM was aware of
those when it made its recommendation for closer cooperation.
IOM Recommendation
“Establish a Scientific Advisory
Board.
“CIRM should establish a single
Scientific Advisory Board comprising individuals with expertise in
the scientific, clinical, ethical, industry, and regulatory aspects
of stem cell biology and cell-based therapies.” Members of this
board would be from out of state and replace existing advisory
boards. They would be appointed by and report to president.
CIRM Response
CIRM says the structure and membership
of the a new board is under discussion, but generally indicated it
would go along this proposal. Not specifically addressed was
abolition of other advisory groups.
Develop a “sustainability” platform
in consultation with current and future partners, including sources
of funding.
IOM Recommendation
Develop a “sustainability” platform
in consultation with current and future partners, including sources
of funding.

CIRM Response
Chairman Jonathan Thomas said he is
working on details of a plan.
IOM Recommendations
“Incorporate Future Enforcement of
Intellectual Property Policies in the Sustainability Platform.
“As part of the plan maximizing the
continued impact of CIRM’s many achievements..., CIRM should
propose regulations that specify who will have the power and
authority to assert and enforce in the future rights retained by the
state in CIRM-funded intellectual property.”
“Consider Harmonizing Intellectual
Property Policies with Policies of Bayh-Dole Act.
“As other sources of funding for stem
cell research become available and as the field of regenerative
medicine advances from the laboratory to the clinic, the ICOC should
reconsider whether its goal of developing cures would be better
served by harmonizing CIRM’s IP policies wherever possible with the
more familiar policies of the Bayh-Dole Act.”
CIRM Response
The governing board's IP Subcommittee
will review the policies and make recommendations.

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/0VfeUpeWrOw/stem-cell-agency-plan-falls-far-short.html

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Patient Advocate Reed Defends Patient Advocates on Stem Cell Board

Posted: February 3, 2013 at 8:10 am

Patient advocate Don Reed, declaring that the Institute of Medicine's (IOM) 17-month study of the $3 billion California stem cell agency is "grossly misguided," this weekend nonetheless said the agency took "the high road" in its response to the study's recommendation.

Reed, of Fremont, Ca., was particularly incensed about the IOM's recommendations concerning patient advocates on the board. The IOM said that none of the board members, including patient advocates, should vote on grant applications secretly in grant review groups. The IOM said their votes should be recorded in public at full board meetings. Other patient advocates would still have seats on the grant review group, under the IOM recommendations. But they would not also be members of the governing board.

The IOM also said that CIRM should also revise its conflict of interest standards to regulate personal conflicts of interest, such as those involving particular diseases and patient advocates. Some members of the CIRM governing board bristled at the recommendation, and the board did not act on it last week.

Last Wednesday, the CIRM board acted to permit board members who are patient advocates to continue to participate in the closed door grant review sessions, but not vote on the grants at that stage. Previously patient advocates had two cuts at applications, one in the grant review group and one at the public board meeting.

Writing on the Daily Kos blog, Reed also said that no real conflicts of interest currently exist on the board, although 90 percent of the $1.7 billion that has awarded has gone to institutions tied to board members.

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/SmmFtyc1zXo/patient-advocate-reed-defends-patient.html

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Loring on Patient Advocates and Their Role at the California Stem Cell Agency

Posted: February 3, 2013 at 8:10 am

The following statement by stem cell researcher Jeanne
Loring was read at the January 23, 2013, meeting of the governing board of the California stem cell agency. Loring is director
of the Center for Regenerative Medicine at the Scripps Research
Institute in La Jolla, CA.

“I am sorry that I
cannot attend this important meeting of the ICOC. I'm in Toronto
reviewing stem cell grants for Japan and Canada. I've asked (patient advocate) Don Reed
to read my statement.
“I am a California
stem cell scientist whose research is funded by the NIH, private
foundations, and CIRM. I am the director of one of CIRM's shared
laboratories, which has provided formal training in research and
ethics to hundreds of young stem cell scientists. My CIRM funding
supports the stem cell genomics research that is the main focus of
the lab. We have also been funded by CIRM to investigate stem cell
therapies for Alzheimer disease and multiple sclerosis. I have
leveraged CIRM grant support to obtain funding for studies of autism
through the NIH, and for Parkinson's disease from a private
foundation.
“The IOM report
recommended a number of changes in CIRM's policies. One of these
recommendations is of especially great concern to me: the suggestion
that patient advocates should have much less influence in CIRM's
decisions about what research should be funded.
“Patient advocates
are extremely valuable to us researchers. Most of us stem cell
researchers had never met a patient advocate- and perhaps not even a
patient- before CIRM was founded. In my 20 years of being funded by
the NIH, the funding agency never once suggested that I should talk
to people who have the disease, or have relatives with a disease that
I was receiving funding to study.
“With my first CIRM
grant, I started meeting patient advocates, and now I can't imagine
pursuing a disease-related research project without them. I've
learned a great deal from the advocates on the ICOC, and I greatly
enjoy talking with them. They are wonderful sources of knowledge:
Jeff Sheehy taught me about HIV/AIDS and patient activism, I learned
about Parkinson's disease from Joan Samuelson, autism from John
Shestack, and David Serrano-Sewell, Diane Winoker have educated me
about MS and ALS.
“Professional
research scientists are competitive by nature- a conversation between
scientists is often constrained by our secrecy- we need to publish,
or perish. But advocates have no such constraints, which makes ICOC
meetings more enjoyable and informative than many scientific
meetings.
“Patient advocacy has
made me a better scientist. Advocacy makes CIRM-funded research
breathtakingly relevant and uniquely powerful to change the course of
medicine.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/l-jQiD3JTec/loring-on-patient-advocates-and-their.html

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CIRM’s Thomas: Conflicts ‘Put to Bed’ at Stem Cell Agency

Posted: February 3, 2013 at 8:10 am

The chairman of the $3 billion
California stem cell agency, Jonathan Thomas, today hailed board
action last week as putting “to bed once and for all” questions
about financial conflicts of interest by members of the agency's
governing board.

Writing on the agency's blog, Thomas
pointed to board approval of a new policy that would bar 13 of the 29
members of the governing board from voting on any grants whatsoever.
The 13 are the members who are “appointed from an institution that
is eligible to receive money.” Three other board members have ties
to institutions that receive money. Two are employees of the institutions and one is the
chair of the University of California board of regents, Sherry
Lansing. All three are appointed as patient advocate members of the
board. Currently all 16 are barred individually from voting on grants
to their institutions, but they can vote for awards to other
institutions.
Thomas proposed the plan last week to
the governing board, which approved it on a 23-0 vote with one
abstention. Thomas advanced the proposal in response to the
recommendations of a 17-month study by the Institute of Medicine(IOM).
CIRM paid $700,000 for the blue-ribbon report, hoping that it would
serve as the basis for continued financing of the agency beyond 2017,
when funds for new grants run out.
The IOM's far-reaching recommendations
included creation of a majority of independent members on the board,
which would mean some current members of the board would lose their
seats. No institutions would be guaranteed seats on the board.
Currently five members are appointed from the University of
California. The Thomas plan does not deal with those recommendations.
The IOM said “far too many” members
of the board have ties to institutions that receive funds from CIRM.
Compilations by the California Stem Cell Report show that about 90
percent of the $1.7 billion that the board has awarded has gone to
institutions linked to directors.
Thomas said that the board last week
“endorsed a framework of proposals that would dramatically change
the way the board works, and directly addresses the concerns and
recommendations of the IOM, in particular their feeling that the way
our Board works could create a perception of conflict of interest.”
Concerning the change in voting for the
13 board members, Thomas wrote,

“It was not an easy change to propose
and certainly not an easy one for our board members to approve. They
all care deeply about our mission and devote a great deal of thought,
time and energy to helping us do our work. So for 13 of them to agree
to abstain from a key aspect of their work was difficult to say the
least. And yet they did it because they felt it was important for the
overall goal of the agency.”

Thomas continued,

“So why did we take this approach?
It's simple. We want people to focus on the great work we do, on the
groundbreaking research we fund, and the impact we are having on the
field of regenerative medicine not just in California but throughout
the U.S. and around the world. As long as there are perceptions of
conflict of interest hanging over the Board, this will continue to be
difficult.”

Thomas said,

“This puts the economic conflicts
issue to bed once and for all.”

Source:
http://feedproxy.google.com/~r/blogspot/uqpFc/~3/GHXrGjkYixw/cirms-thomas-conflicts-put-to-bed-at.html

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