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.
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