"The health and well being of our families is on the line," the organization said in an e-mail to the California Stem Cell Report. "It is time for California’s minority communities to take ownership of their billion dollar investment by asking questions, demanding answers, speaking up, and being heard."
Greenlining, a self-described "multi-ethnic public policy think tank bridging together a coalition of more than 40 non-profits throughout the state," popped up last spring during a legislative hearing involving the stem cell agency but has been silent since.
In the wake of the grant announcement on Friday, Joe Tayag, health policy associate at Greenlining, said, . "We feel that it’s time for communities of color to participate in this dialogue and we’ll be starting our public advocacy campaign soon."
Tayag also offered the following commentary, which he titled "The Color of Stem Cells: Why the benefits of stem cell research might not be for people like me."
Here are his remarks in full since they are not available elsewhere on the Internet:
"After losing half of one of my lungs to tuberculosis while volunteering in the Andes last year, I assumed that life would just never be the same again. By this I meant that the flight of stairs to my apartment would always seem twice as long and that I would have to give up things I enjoyed like taking long runs on Sunday mornings.
"However, the promise of therapeutic treatments derived from stem cell research gives individuals like me a hope for normalcy. Yet, as an immigrant from a low-income family, I can’t stop from cringing at the thought that the low-income and marginalized communities of the state still have no explicit guarantee of access to the promised 'cures' of Prop. 71—much less to adequate health care in general.
"Last Friday, the Independent Citizen’s Oversight Committee (ICOC) allocated a little over $39 million to prestigious research institutions like UCLA, UC Berkeley, Stanford, USC, and Cal Tech among others. Yet, it’s unclear from perusing through many of their grant proposals just how much focus these research institutions will give to communities of color and their health needs.
"The initiative passed last November with overwhelming minority support. Despite this, there has been no mention of issues crucial to communities of color especially with regard to the California Institute of Regenerative Medicine’s research and staffing diversity. After all without minorities represented at CIRM’s decision making bodies, who will listen to the needs of the African American communities who are more susceptible to heart disease? Or to the Latino communities who suffer from diabetes? Or to the Asian Pacific Islanders who are more prone to sickle cell anemia?
"Without a more diverse governing board, these questions will be left to dwindle in uncertainty as California drafts the first ever model of state-sponsored stem cell research arrangements that will be referred to by the rest of the nation. New Jersey and North Carolina are already following suit and unless California sets a proper example of diverse representation, we’re bound to see the ignorance of minorities’ needs ripple throughout the rest of the country.
"To prevent this, minority communities should be represented proportionate to their numbers in California in each of the following areas of Prop. 71’s implementation:
-- The institute’s governing board (also known as the Independent Citizen’s Oversight Committee). As it stands, only 3 members of the ICOC are minorities.
-- The recipients of the $39 million in grants going toward the training of lab technicians, medical students and social scientists.
-- The groups of people on whom the medical products are tested to ensure compatibility amongst all communities.
"Due to scarce resources, we currently have a kind of disease hierarchy with regard to research priorities. Diseases that disproportionately affect communities of color (such as diabetes, heart disease, HIV/AIDS and sickle cell anemia) should be considered and represented in any discussion of the allocation of grants and research goals—but who will uphold the needs of the underserved when communities of color are not being allowed at the decision-making table?
"The reverse is also true: just as the minority public deserves to be represented, the state-sponsored agency needs to report the proper information to the minority public. CIRM is notorious for releasing important information as late as hours before its public hearings and thus, does not allow enough time for people to digest their materials—much less understand them.
"The last September meeting of the Independent Citizen’s Oversight Committee is evidence of this. Although the ICOC meeting agenda contained some background material on several matters such as the proposed budget and guidelines for embryonic stem cell research, the items were not 'translated' to the public in terms that regular citizens could understand.
"Though the 'translation' from scientific jargon to understandable speech seems like a difficult task, the request does not seem even close to colossal considering that CIRM currently has an almost $30,000 a month public relations contract with the Edelman PR firm. With $30,000 a month going to public relations, why is it that communities of color still hide at the sound of the words, 'stem cell research?' I would argue that it is due to the lack of outreach and education in our communities that many people of color believe that the issue does not concern them."
In contrast, the $3 billion that minority communities pledged to give to stem cell research clearly means that it does concern them. The legislative fate of these tiny cells is calling for communities of color to ask questions such as: will the treatments derived from the research that I am helping to fund cure my ailing loved ones? And even if they will, will the treatments be affordable to my community?
"The health and well being of our families is on the line. It is time for California’s minority communities to take ownership of their billion dollar investment by asking questions, demanding answers, speaking up, and being heard."
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