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

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.”