Sunday, September 20, 2015

Parkinson's and the California Stem Cell Agency: Advocates Cite 'Overwhelming' Need to Air Unhappiness

The California stem cell agency has posted a letter online from Parkinson’s patient advocates that says that an emotional outpouring at a July stem cell meeting grew out of an “overwhelming” need to protest agency delays in funding research.

The letter was signed by Sherrie Gould and Jenifer Raub, leaders of Summit4StemCell, a San Diego group, and was sent to the agency's board. Gould and Raub wrote about the July 23 meeting of the board during which the patients protested after they learned that no funding for the research they were backing would be available until about 2017. (See here for full text of the protest.)

The link to the Aug. 2 letter is part of the agenda for this Thursday’s teleconference meeting of the directors of the $3 billion research effort. It said, 
“Our group at Summit4StemCell (has) been regularly attending the CIRM meetings for the past 18 months. Out of respect for Jeanne Loring PhD, we have typically shown up in ‘silent solidarity’ but this meeting was different and many of us had an opportunity to speak publicly about our project, our progress and our desperate need for funding.
“The outpouring on Thursday (July 23) was spontaneous and unexpected. We at Summit feel strongly that we communicate with all board members that our presence at any of the CIRM board meeting is not orchestrated by Jeanne Loring, Dr. Melissa Houser (of the Scripps Clinic) or anyone from the Loring lab.
“We are a passionate group of dedicated Californians that believe strongly in the probability of success of this research using pluripotent stem cell technology. Dr. Loring has always counseled respect and brevity. We believe she would prefer that we be the face of the issue and not the strident voice.
“When confronted with the possibility that there could be no help (or hope) for over a year, the need to speak and be heard was overwhelming. We sincerely believe that you and the board heard us and will do all you can to find an exception or some way to help.” 
The reference to Loring, who is head of the stem cell program at the Scripps Research Institute in La Jolla, has to do with the Summit group’s support of her research. It also seems to be linked to an anonymous comment filed on the California Stem Cell Report’s account of the July protest.

The writer indicated that Loring had submitted an application earlier that was scored unfavorably by the agency, based on a conversation that the writer had overheard at the Oakland meeting. In response, Loring said no such conversation took place. She said an earlier application in another round did not meet CIRM criteria and was withdrawn. The agency does not publicly comment on such grant review processes, which are conducted in secret. It also does not release the names of unsuccessful applicants. (See Loring's and the writer's complete comments at the end of this item.)

Summit4StemCell is also not happy with teleconference nature of this week’s meeting. Earlier this month, they said their voice was “diminished” because of the inability to speak to the governing board face-to-face.

The California Stem Cell Report item on the teleconference/Parkinson’s flap is the most widely read post this month, exceeding the readership of the item dealing with the agency’s announcement concerning its $32 million stem cell bank. 
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3 comments:

  1. I am posting the following on behalf of Diane Pool, who reported difficulties with the comment function on the blog. If others have problems with the comment function, please email me at djensen@californiastemcellreport.com. Here is Pool's comment.
    "Three times I tried to publish a comment under the article about delays but they were not uploaded. Is it censorship or a simple software issue? Here is my comment: 'As a friend of one of the ten Parkinson's stem cell team, I am appalled and distressingly dismayed at patronizingly bureaucratic delays that deny intelligent people their right to determine their own health care.' "

    ReplyDelete
  2. Just get into a clinical trial we are told. NEVER go offshore. All stem cell clinics should be shut down. These poor patients are finding out that there is no such thing as expediency at CIRM. How many years now have they been telling patients that there will be lots of clinical trials and cures are just around the corner? All you have to do is keep the tax payer money rolling in to fund their labs and salaries for the next decade.

    You can join a study and become a Guinea pig for our Pharma trial so we can make billions, but don't go to those evil stem cell clinics and be a Guinea pig so they can make millions.

    But the they don't mention going to Pharma trial is like roulette, 50/50 chance of actually getting the real stuff or placebo. If you have heart muscle or stroke damage and are in danger of a re-occurrence, it's a crap-shoot waiting 6 months to a year until you get the real therapeutic if you are in the placebo group. Medical trials treat humans as rats.

    We live in an upside down backwards world! The Big Pharma/Research Monster has gotten so big, so bloated, and lives only to feed itself that one wonders what it will take to capture it and send it off to the land of Monsters, so it can be replaced with meaningful research whose purpose is to benefit patients!

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  3. Barbara/Stem Cell Pioneers12:57 PM

    Just get into a clinical trial we are told. NEVER go offshore. All clinics should be shut down. These poor patients are finding out that there is no such thing as expediency at CIRM. How many years now have they been telling patients that there will be lots of clinical trials and cures are just around the corner?

    ReplyDelete