Educating Ourselves about HIV: A Call From the “Underground”

Jonathan Rochkind

Across the country, focus groups reveal that many Americans are ill-informed about HIV and AIDS, but want to know more.

Editor’s Note: An earlier mistake in this article has been corrected to state that "about one in five Americans infected with HIV don’t know it."  The line had previously and erroneously been written to suggest that one in five Americans were infected with HIV.


Readers of Rewire
likely know that HIV/AIDS in the United States remains an issue. It
is estimated that someone in the United States gets the virus every
nine and a half minutes
and that about one in five Americans infected with HIV don’t know it
HIV is the fourth leading cause of death for African-American men and
the third for African-American women between the ages of 25-44.

But ask the American public
about HIV/AIDS in the United States and, more often than not, you may
simply receive blank stares. This is something we discovered when traveling
the country conducting focus groups for the report "Impressions of HIV/AIDS in America:
Building Public Support For Workable Solutions To End The Epidemic
researched and written by Public Agenda, a nonpartisan
nonprofit research and engagement organization. Yet while we found low awareness of the issue overall, below the surface
of those stares is stigmatization of those who are infected.  Yet there also is a general understanding that something needs to be done and
support for efforts to reduce both the incidence of HIV infections, and the discrimination
that can occur from having AIDS. 

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That the public does not often
think about how HIV/AIDS is affecting America is well-documented. The Kaiser Family Foundation recently
asked Americans if AIDS affects their own community,
and nearly 3 in 10 said that HIV has never been a problem, with another
10 percent admitting outright that they do not know. 

In a focus group we conducted in Westchester County, New York–a suburban enclave of New York City, where HIV is spreading at three times the national average–respondents said things like, "I don’t hear anything talked about it. You
don’t see anything in the papers…".  On the other side of the country, a person living in downtown
Los Angeles characterized the disease as "…a nonsubject…an
underground disease."

The scarcity of discussion about HIV/AIDS
may explain misconceptions about how the disease is transmitted, voiced
by some focus group participants, perhaps left over from 1994–the year
Magic Johnson announced he was HIV positive, and the last time many
we spoke with said they had heard anything about the illness. As a woman
from the Des Moines Iowa group put it, "…when AIDS first hit
in the ’80s…there was all these rumors how you can get it and how
you can’t.  I don’t think anyone ever heard the answers…no one really
knows [how the disease is transmitted]."  

This undercurrent of not really
knowing if you can get HIV from casual contact permeated every focus
group conducted.  Even though most of the people we spoke with rattled off unprotected
sex and needle exchange as ways that HIV is transmitted, nearly everyone
we spoke with stated that they would be uncomfortable around people
who are HIV-positive, especially if they are doctors, dentists, babysitters
or teachers.  A man in Los Angeles said, "If you know a person has
AIDS, or you find out a person has AIDS… you might feel sorry for
them, et cetera, but you wouldn’t want them around your child."  Another man in Westchester said, "if you knew your doctor had AIDS,
I think the majority of patients would not go back to that doctor…if
you saw a container on the front that said, ‘Acid: do not put your
hands in it,’ you wouldn’t do that either." 

Although this lack of knowledge
may be disconcerting, we also heard many individuals suggest that stigmatization
is wrong even if they personally were not ready to stop it.  When asked
to think about what it may be like to be HIV-positive, we heard responses
like this one in Birmingham, Alabama, "People [would be] drawing
away from you.  They don’t want to have anything to do with someone who’s
infected…. I think that socially, it would just cut them off."  
A Des Moines, Iowa, focus group participant offered this assessment:
"…they sometimes will ostracize people that have [HIV/AIDS] because
the fear is just like, ‘I don’t want to be around you because I don’t
know how to deal with you because you have HIV,’" showing a real
concern about the possible isolation those with HIV may face.  

And, perhaps most importantly,
the people we spoke with also voiced support for increasing funding
to address HIV/AIDS issues, showing perhaps that empathy and compassion
trump lack of awareness and understanding.  Much of the funding, they
say, should go primarily to education programs that would, in the words
of a man from Los Angeles, "…get [us] more enlightened, and…
want to know more."  

Many of the people we spoke
with, often the very same people who had confessed that they did not
know anything about AIDS in the U.S, and the very same people who said
they would fear those who are HIV positive, lingered after the groups
saying that they wanted to know more, that they wanted to know "the

A call, perhaps, to take the
issue of HIV/AIDS in the United States out from the "underground"
and into the national discussion. 

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