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The democracy of HIV/AIDS

The disease of HIV/AIDS is an example of true democracy. The disease does
not discriminate against the color of a person's skin, gender, age and
sexual orientation. HIV/AIDS does infect the wealthy, the poor, the
educated, the uneducated and the seemingly invincible.

The positives to HIV/AIDS are not always negative. This disease is unique
in that it has the potential to build relationships between ethnicities and
people of diverse backgrounds to fight for a common cause. It is an example
of the true human spirit when we show our children that we must all stand
together to build healthier behaviors and healthier communities in South
Dakota and beyond.

In 1993, the Centers for Disease Control and Prevention (CDC) mandated that
a HIV Community Planning Process be created. This mechanism is designed to
build leadership from the grassroots upward. Any person interested in
participating in HIV/AIDS prevention issues are welcome to participate in
the community planning processes. In theory, the community planning process
is designed to ensure Parity, Inclusion and Representation (PIR) from
community level individuals and professionals of our local communities.

The funding for HIV/AIDS prevention is allocated from Congress to the CDC.
It is then distributed to each state through state health departments.
Although tribal nations are recognized within the United States
Constitution and federal law as being parallel (not beneath) the status of
states, the current funding stream for CDC-led HIV prevention, forces
tribes to inadvertently be under the auspices of the state health

For fiscal year 2005, South Dakota will receive approximately $67,000. This
money pays for state health department staff who deal with infectious
disease. After the needs of bureaucracy are funded the remaining monies are
distributed to the State Planning Groups (SPGs). Each of these groups
representing their respective regions within South Dakota receive
approximately $20,000 a year for HIV/AIDS prevention for the priority
populations within their respective areas. The overall responsibility of
the SPG is to develop a comprehensive HIV prevention plan for the state of
South Dakota.

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American Indians within South Dakota are quickly moving towards 9 percent
of our state population but account for 14 percent of all HIV/AIDS
infections. Due to the large American Indian population, South Dakota is
one of 11 states that hosts a Native-specific SPG component known as the
Native American Advisory Committee (NAAC). The NAAC is the mechanism for
all tribes in South Dakota to be proactive in the arena of HIV/AIDS
prevention and access to CDC funding, i.e. INCLUSION.

From this group we have two voting members to the larger statewide planning
group, i.e. REPRESENTATION. If tribal nations could effectively lobby for
our "fair share" based on epidemiological data, Native census data,
co-factors and well documented health disparities, we could receive well
more than the $20,000 currently shared between the nine tribal nations
within South Dakota to address HIV/AIDS. Our hindrances include but are not
limited to a lack of knowing our HIV/AIDS prevalence, and the paternal,
bureaucratic atmosphere tribes face in collaborating with other
governmental entities.

PARITY is also a CDC-mandated component to the prevention processes. For
American Indians within South Dakota, it is this area that is our weakest
link. The word parity assumes a level playing field for all. The realities
for tribal populations participating in the South Dakota planning processes
highlight a much larger, historical and on-going quandary. The fact that
Congress and the CDC neglect to acknowledge federally recognized tribes
with the same legal courtesy given to states, as directed by the law, is
the foundation of our inability to reach parity. Congress does have the
power to amend or modify the current funding stream to direct HIV/AIDS
funding to tribes, Native Health Boards or tribal epidemiological centers.
This is the only sure way to reach true parity and offer the quality of
care needed in Native populations. This direct approach would also
guarantee cultural competency, increase active participation by those who
are at risk for HIV/AIDS and expedite prevention and intervention efforts
to South Dakota tribal communities - which lead every statistical path
towards HIV infection.

In the best of all possible worlds, Native people should determine our own
best practices to address health challenges in our populations. Mainstream
prevention models are largely "disease prevention" based, and not
"wellness" based. Sanctioned CDC programs frequently encourage individuals
to "not engage in risky behaviors" rather than to support their involvement
in "healthy lifestyle" choices. "Disease prevention" methods could be
considered a Band-Aid approach to address a chronic disease as it relates
to our tribal populations.

Our collective reality today is that positive change takes time. It takes
people of vision and courage to do more than complain about the way things
are. It takes millions of dollars towards prevention - better spent than
billions of dollars for treatment of a 100 percent preventable disease. We
will all be affected by the issues of HIV/AIDS sometime during our
lifetime. To be successful we must stand in unity with our non-Indian
relatives and work towards HIV/AIDS prevention and intervention with mutual
respect. Only in this manner will words like democracy hold any true value.

Andrew Catt-Iron Shell serves as STD/HIV Prevention coordinator for the
Rosebud Sioux Tribe in South Dakota. He is also a Capacity Building Task
Force member to the Office of Minority Health Resource Center. He can be
reached at