Biomedical Engineering Reference
In-Depth Information
of representatives of patient organizations is an important part of
consensus-building in the community and is an essential component
of good democracy (Dodds and Ankeny, 2006). The passing of
Proposition 71 in California is arguably modelled on similar elements
of community engagement and the politics of vitality, largely pursued
by highly persuasive patient advocates.
Proposition 71 - the California Stem Cell Research and Cures
Initiative 2004 - was developed in direct response to the limitations
on federal funding of human embryonic stem cell research imposed
by President George Bush in 2001 (Lysaght et al., 2006). Proposition 71
sought to have the constitution of California amended via a
referendum so that a California Institute of Regenerative Medicine
(CIRM) could be established and state bonds used to fund embryonic
stem cell research (Lysaght et al., 2006). The proposal was for $100
million a year for a period of ten years to be distributed to research
groups in California working with embryonic stem cells (Lysaght et al.,
2006). Proposition 71 was eventually passed by a majority of
Californian voters in November 2004. The full text of Proposition 71
can be found on the CIRM website (
http://www.cirm.ca.gov/pdf/
prop71.pdf
).
Proposition 71 had highly influential support and backing from a
coalition of patient advocacy organizations under the banner 'Yes to 71'.
Key players included lawyer and real-estate investment banker
Robert Klein who went on to become the first Chairman of the
Board of CIRM (Dolgin, 2010). Klein originally became a patient
advocate through his involvement with the Juvenile Diabetes
Research Foundation of America (JDRF) after his young son was
diagnosed with diabetes in 2001 (Dolgin, 2010). In an interview
with
Nature
Klein has said of his work with the JDRF that it
'demonstrated to me that dedicated, well-informed, focused patient
advocacy could be very effective' (cited in Dolgin, 2010). After the
Bush decision to restrict federal funding for human embryonic stem
cell research, Klein started work on Proposition 71, building a
coalition of other families, patient advocacy organizations and high-
profile celebrity endorsements along the way (Dolgin, 2010).
Klein's power and influence effectively provided a significant
amount of leverage to the campaign to have Proposition 71 pass
