RESPONDING TO THE CHANGING
DYNAMICS OF THE AIDS EPIDEMIC

April 26, 1994

Imani Harrington, a woman living with AIDS in
San Francisco, captured the essence of
discrimination against people with the disease
when she penned the line: "Shame on your name
when they hear you've got the AIDS of America."

Reading those words, from the book Positive
Women: Voices of Women Living with AIDS,
Jean McGuire, former executive director of the
AIDS Action Council, in Washington, D.C.,
opened the forum "Public Policy Responses to
the Changing Dynamics of the AIDS Epidemic."
Sponsored by the Harvard AIDS Institute, the
Harvard Law School Forum, and the Harvard
Legal Aid Bureau -- AIDS Practice Group, the
panel challenged those who uphold the status quo
in AIDS public policy.

The recitation of numbers has become like a
round in the AIDS discourse: the tune doesn't
change but the volume intensifies, as more and
more voices join in. McGuire, who moderated
the forum, presented a few bars from the latest
chorus: 103,000 cases of AIDS in the United
States last year -- one-third of the world's
accumulation. The highest rates of increase in the
United States are among black and Hispanic
women, the majority of whom are being infected
through heterosexual transmission.

Looking to the numbers of AIDS cases to decide
public policy, however, is "insufficient" and "too
narrow," said McGuire, as such a quantitative
analysis ignores race, class, and history of
oppression. It is to those variables, she
suggested, that makers of public policy must turn
their attention. The panel members seemed to
agree.

"New community groups demand to be
participants in the process" of determining
public policy around AIDS, said Kristine
Gebbie, national AIDS policy coordinator.
"Those who have not been at the HIV policy
table now want to be there." She argued that
many communities view AIDS as a disease that
afflicts only certain "types" of people, such as
gay men or injecting drug users. Those myths
must be broken down, she said, and communities
need to learn how they can be affected and what
they can do when they are. That means federal
policy makers must work to design
"different-sized tables."

For the first time in the history of the epidemic,
an HIV-friendly administration occupies
Washington, Gebbie added. Under Presidents
Reagan and Bush, advocates had to "battle to get
whatever we wanted," she said. Now people
with HIV sit in on all levels of policy making.

The new attitude has led to the creation of the
National Task Force on AIDS Drug
Development, Gebbie added. Comprising
researchers, representatives from pharmaceutical
companies, and activists with HIV, its principal
goals are to study questions of AIDS drug
allocation and to eliminate the barriers to getting
new drugs to market.

Nicolās Parkhurst Carballeira, executive
director of Boston's Latino Health Institute,
argued that a white middle-class ethnocentric
approach that focuses on the individual has been
detrimental to dealing with AIDS in communities
of color, especially Latino ones. AIDS in the
Latino community, he said, is first a family and
second a community experience, not an
individual one. He quoted an HIV-infected
Hispanic man as saying, "When something
happens to us, we involve our grandmothers, our
sisters, and everybody else."

Carballeira noted that prevention efforts, tertiary
medical services, and intervention strategies all
focus on the individual, taking what is known as
the "downstream approach." "We need upstream
approaches," he said, citing the need for
interventions that take context as well as
individuals into consideration.

He argued further that current policy pits groups
against one another in a "false antagonism" as
they attempt to obtain their share of the small
amount of funds allocated for AIDS support
services. For example, he said, the so-called
density factor in the correlation formula of the
Ryan White Fund unreasonably favors large
urban centers, places that have a higher density
of AIDS cases. Thus, an AIDS case in San
Francisco or New York City receives twice as
much funding as an AIDS case in Boston, he
said, and six to seven times more than a case in
Puerto Rico. Puerto Rico has one of the world's
highest rates of AIDS cases, he added, and yet
the Medicaid cap there for people with AIDS
"doesn't go much further than covering a bottle of
aspirin."

Government reliance on philanthropic and
community-based organizations (CBOs) to
provide services to those affected by HIV has
taxed those resources beyond their means and for
too long excused other institutions -- including
governmental bodies, academic institutions,
professional associations, corporations, and the
media -- from taking responsibility in this
epidemic, said Rodger McFarlane, executive
director of Broadway Cares/Equity Fights AIDS.
Even the best CBOs are "grossly inadequate" at
meeting all needs, he said.

"CBOs are strained to their max, and to expect
them to influence policy isn't possible," said
McFarlane, who has been an AIDS activist since
the beginning of the epidemic and served for
several years as executive director of the New
York-based Gay Men's Health Crisis, the
country's first and largest AIDS service group.
CBOs can only go so far. Then other institutions
must take over.

"Ultimately, I can't write the laws, I can't make
the NIH do all the research it says it will," he
said. "Change does not occur until the
alternatives become unacceptable to most
people. What it comes down to is how we as a
culture value the people who are infected. For
we choose who dies in this country -- routinely."

Mindy Thompson Fullilove, an associate
professor of clinical psychiatry and public health
at Columbia University who is studying how
environment contributes to the high HIV infection
rates in specific areas, took a social-geographic
approach.

"To study high-risk situations, we must examine
them along the dimensions of person, place, and
time," she said. "Rapid changes in the urban
environment, for example, can act to increase the
incidence rates of AIDS."

She showed slides comparing a neighborhood in
central Harlem 40 years ago with ones today.
The older slides depicted a bustling urban street
with intact buildings full of apartments, shops,
and businesses. The recent ones showed
burned-out buildings with boarded-up windows
rising from sidewalks littered with broken glass
and garbage. "Think of this as a toxic-waste
dump in Yosemite," Fullilove said. Seemingly
lifeless, the scene represented the end of a
process she called the "creation of dead spaces."

The rats, waste, and other terrors of urban living
bred by these "dead zones" make them
uninhabitable. Concurrent with their loss as
housing comes the destruction of the social
networks that existed within them: people in
urban neighborhoods develop intricate patterns
of give and take with their neighbors, and those
relationships are destroyed along with the
buildings. Central Harlem has lost one-third of
its housing units to this kind of decay, Fullilove
said.

If the buildings are not reconstructed, Fullilove
added, there can be no "reknitting of the fabric of
the community," which leaves every person
living in the area vulnerable. "What links the
South Bronx to Uganda to the gay community of
San Francisco is the process of displacement --
forced displacement -- of the powerless."
Terri L. Rutter is an editor and writer at the
Harvard Medical Alumni Bulletin.

Reprinted from Harvard AIDS Letter, July/August 1994