Who is Informing our Young People about Aids,

and Why Arent they Listening?

WINIFRED MONTGOMERY
State University of New York at New Paltz, U.S.A.
Introduction
Over the last decade, a great deal of eort has been given to informing
our young people about HIV/AIDS, how it is transmitted, and what can
be done to protect oneself from infection. Public schools, community
health and social service groups, and prominent non-governmental
organizations (NGOs) have been important participants in these eorts.
Nonetheless, an estimated 20,000 new HIV infections occur each year
among young people under the age of 25; youth between ages 13 and 20
make up half of that number.
1
Since the beginning of the epidemic,
more than 126,000 young Americans have developed AIDS in their 20s
most of whom were infected with HIV as teenagers.
2
Several factors
appear germane in understanding why young people are increasingly
vulnerable to HIV infection. Of particular import are risky sexual
behavior, substance abuse, race/ethnicity, perceptions that they will not
become HIV infected, and lack of access to information.
HIV/AIDS has invaded the lives of human beings of all ages and
cultural groups across the world, and there appears to be no end to the
fear, misery, and hopelessness that attend this devastating disease. The
statistics on the HIV/AIDS are sobering, especially to those who
recognize the ramications of the disease on families and communities
not only in their immediate surroundings, but in cities, states, and
nations throughout the world. Clinical evidence of HIV as a disease was
reported in the United States in 1980, yet the federal governments
response to that evidence did not measure up to the inherent urgency of
the reported ndings.
3
The government did not demonstrate a com-
mitment to confront and deal with what was steadily becoming a public
health problem of incredible magnitude.
4
Adequate funding for AIDS
research was not forthcoming, and there was the belief among
many policy makers, as well as the general public, that AIDS was a
Dialectical Anthropology 28: 365376, 2004.
2004 Kluwer Academic Publishers. Printed in the Netherlands.
365
homosexual disease, or a dreadful outcome for people who injected
drugs. In the meantime, the global consequences of ignorance and delay
with regard to this disease were reshaping the social, economic, and
geopolitical dimensions of our world. In fact, by the time the United
States directed sucient attention to the disease, it was too late to avert
the catastrophe. The virus was already pandemic in the nation and had
spread across the North American continent.
5
Young people, in particular, are rapidly becoming infected with HIV.
Since the beginning of the pandemic, more than 126,000 young Amer-
icans developed AIDS in their 20s. Since the period between HIV
infection and AIDS diagnosis can extend to as many as 10 years, it is
clear that large numbers of people who develop AIDS in their 20s
became infected with HIV as adolescents.
6
Public schools (primarily middle and high schools); community-
based health and social service organizations; county hospitals; religious
organizations; television and radio public service announcements di-
rected to the youth market are all diligent in their eorts to inform the
youthful public about HIV/AIDS prevention. Across the nation, these
varied sources are determined to inform young people about HIV/AIDS
prevention. Their techniques vary religious groups, in particular, stress
abstinence as the rst line of defense but the intent of all involved is to
inform young people about HIV prevention. An important question at
this point is: Given the amount of information available to young people,
what accounts for the apparent disconnect between the information youth
have about HIV/AIDS and the high incidence of the disease among their
number?
AIDS? Not me!
The notion among some young people that AIDS is not a big problem
in their lives may explain their vulnerability to the persistent danger of
HIV infection. In their minds, AIDS is something that happens to other
people as evidenced by comments such as its a gay disease; drug
addicts get AIDS; if you do get infected, you can get treatment. This
attitude is sometimes explained as a personal fable, unique to children
and youth. It is a naive way of thinking about life situations that allows
young people to separate themselves from the problems and miseries of
the adult world.
Among the young people who do understand that they can contract
the disease, it appears that a great many of them are not yet persuaded
WINIFRED MONTGOMERY 366
to consistently protect themselves from possible infection. There is the
belief that knowing and trusting your partner is sucient reason to
forego protected sexual activity. There is also the sustaining belief
among this group that it (HIV/AIDS) wont happen to them. For
example, a recent Kaiser Family Foundation/MTV survey found that
68% of sexually active 1517 year olds do not think they are personally
at-risk.
7
Thus, spurred by ignorance and irresponsible behavior, the
threat of HIV/AIDS has increased, and the press for information and
prevention programs for young people has accelerated. The language
and content of the programs are straightforward the clear purpose is
to avert the disease from its deadly course. Nonetheless, of some con-
cern is how and where this information is disseminated and to whom. Is
the information reaching young people at high risk? Is the content
appropriately explicit; does it clearly delineate the behavior and atti-
tudinal changes which lower a young persons risk for contracting HIV?
A population at high risk
Sexually abused young people, runaways and homeless youth, low in-
come Black and Hispanic youth, gay and bisexual young men, and
injection drug users (IDUs) represent a population of young people
whose life circumstances put them at high risk of HIV infection and,
ultimately, AIDS.
8
The important and disturbing observation regarding
the foregoing statement is that it is possible to identify any number of
young persons whose backgrounds include characteristics found in all
of the groups introduced above.
Street youth
Young people who literally live on the streets in many of the nations
cities (large and small) are dened by their desperate life circumstances.
They comprise runaways who choose the streets and homeless youth
with no options other than to live on the street. Sexually exploited youth
are found among the runaways and homeless.
9
Many of these young
people nd life on the streets preferable to former situations in which
they were powerless to protect themselves from abusive experiences in
their families or communities. Unfortunately, they now nd themselves
among the exploited youth who, in order to survive on the street,
exchange sex for money, food, and shelter.
10
WHO IS INFORMING OUR YOUNG PEOPLE ABOUT AIDS 367
Black and hispanic youth
HIV/AIDS is as much about society as it is about the virus. Among
adolescents, race or ethnic background have become major factors in
the epidemic in the United States. The American Association for World
Health reports that while African-American and Hispanic youth be-
tween the ages of 1319 comprise approximately 30% of the United
States population they represent 65% of AIDS cases.
11
An increasing
number of young African American and Hispanic women in the
aforementioned age group have the highest infection rates in the United
States. In his report on the AIDS epidemic in Black America, Whitaker
noted that members in many African-American communities fear that
HIV/AIDS is becoming a Black disease.
12
Even with the advances in
detection and treatment and the numerous venues from which young
people can inform themselves about protection and prevention, the
spread of HIV/AIDS has become a public health emergency among
African-Americans.
13
Many young women of color report early sexual experiences with
partners several years older. The unequal power in relationships that
very often exist with older men prevent young women from asking
about their partners sexual history, demanding condom use, or
requesting HIV testing.
14
There is little dierence, however, in the
attitudes about responsible sexual practices among young men closer in
age to their young female partners. Most young males determine
without consultation whether they will protect themselves or their
partners from possible sexually transmitted diseases. Thus, despite the
knowledge young women (and girls) may have about HIV/AIDS and
about the availability of condoms in the marketplace, many of them are
rarely in the position to protect themselves. Fear of reprisal or of their
partner leaving them are high on the list of irrational reasons for young
women and girls putting themselves at-risk.
15
Bisexual men are also a bridge for HIV transmission to women.
Living in the down low is a new expression used among African-
Americans to describe men who secretly engage in sex with men while
continuing to have sexual relationships with young women.
16
Such
irresponsible behavior is quite likely to lead to eventual HIV infection
among the young women, as well as their bisexual partners. A chilling
postscript to the foregoing comments is that just two groups young
gay and bisexual men and young African-American and Latina women
infected through heterosexual sex are thought to account for at least
75% of HIV -infected youth in the United States.
17
WINIFRED MONTGOMERY 368
Why HIV/AIDS disproportionately aects African-American and
Hispanic youth is explained in part by the high rate of drug use in areas
where many youth of color live. The lack of awareness of the hazards of
shared needles or limited access to sterile needle exchange programs
create a clear path to HIV infection among injection drug users who
then transmit the disease to any sexual partners they have.
18
Another
explanation is the longstanding stigma attached to AIDS in many
African-American and Hispanic communities that prevents people from
seeking information and the consequent treatment they need; secrecy is
preferable to the shame of being known as a person with AIDS.
19
A nal point to seriously consider is the lack of availability of lin-
guistically appropriate resources with which to inform people from di-
verse populations about HIV/AIDS prevention programs. The failure
to recognize and respond to cultural dierences within African-Ameri-
can and Hispanic communities is often a key reason that people remain
inadequately informed about HIV/AIDS.
20
Young injection drug users
The high HIV incidence among young IDUs is a troubling statistic.
21
Addiction to injecting drugs is associated with high-risk sexual behav-
iors, such as exchange of sex for drugs or money with concomitant
increased risk for HIV infection. After introduction and eventual
addiction to injection drug use, rational thought with regard to personal
health and safety is seldom part of young IDUs reality. They will reuse
contaminated needles, if clean ones are not available, share needles with
their fellow users, or sometimes resort to digging for used needles in
garbage dumpsters.
22
This irrational behavior has led to irrevocable
health disasters in communities across the nation. Moreover, when one
considers the social and sexual interaction of young IDUs with non-
users, and the mobility of this group from one community to another,
the connection between injection drug use and HIV infection is clear
and frightening.
Gay and bisexual youth
Over 50% of infections reported in the United States last year among
young men aged 13 24 occurred among young men who have sex with
men.
23
Social and cultural biases that promote homophobia hinder
WHO IS INFORMING OUR YOUNG PEOPLE ABOUT AIDS 369
young gays from seeking information about healthy sexual relation-
ships. An unfortunate result is that a great many of these young men
leave home. Prostitution becomes a means to support themselves, and
other unhealthy practices such as injecting drugs and unprotected casual
sexual relationships further increase their risk for infection.
24
Access and utilization of information
While the preponderance of studies reveal overrepresentation of poor
persons and persons of color among those infected with HIV, this dis-
ease should not be seen as a health issue only marginalized groups in
society experience. There is no group that is safe from HIV infection;
and certainly, at every economic level one will nd young people who
inject drugs or engage in unprotected heterosexual, gay, or bisexual
activity all behaviors that invite infection. However, the unrelenting
spread of HIV and AIDS requires forceful information and prevention
programs that are available in the diverse environments where high risk
young people are likely to live or congregate. Ultimately, it is knowledge
about HIV/AIDS prevention and about access to medical and social
services that will make a dierence in health outcomes among young
people especially those at risk.
To respond in meaningful ways to HIV/AIDS prevention informa-
tion, young people must have access to that information. It may be that
some youth do not respond or react to current information about the
disease because the message does not resonate as something that can
change their lives. They may, indeed, be listening, but they may not hear
anything that persuades them to alter their behavior.
Getting the message
Connecting non-governmental organizations with community-based
organizations
The questions posed in this article imply a disconnection between HIV/
AIDS information and prevention programs for young people and the
risky behaviors in which they engage. A generation of young people
currently infected with HIV, or threatened with the disease, would
benet from a dynamic new commitment from selected NGOs that
profess a mission to respond to human suering wherever it is found.
WINIFRED MONTGOMERY 370
With a global focus, many NGOs have sought to inform, educate, and
seek ways to prevent the spread of AIDS among all people. Organiza-
tions such as the American Foundation for AIDS Research (AMFAR),
The Global Fund to Fight AIDS, the Bill and Melinda Gates Foun-
dation are among the compassionate respondents to the pandemic.
Their focus in great part has been to meet the daunting health challenges
in developing countries where HIV/AIDS has devastated families and
communities. Given the exceptional work of such organizations, it is
time to call on NGOs to focus more of their eorts in communities in
the United States where increasing numbers of young people at-risk are
found. They must nd ways to forge relationships with community-
based organizations (CBOs) that oer prevention programs. New York
City, for example, represents the metropolitan area with the largest
number of reported AIDS cases nationwide, as well as the largest HIV/
AIDS epidemic among IDUs of any city in the world.
25
One can only
imagine what a successfully implemented and far-reaching sterile needle
exchange program could do to prevent a new generation from being
infected with HIV. Support given to such programs varies from com-
munity to community, because of the fear among some predominately
conservative groups, religious organizations, and governmental ocials
who cite concerns about the impact that needle exchange programs have
on the public order. There also is, in their view, a symbolic message sent
that unimpeded access to needles perpetuates the use of drugs.
26
For
some IDUs, this may be true, but the number of lives that could be
spared HIV infection by this simple measure seems the greater good.
Human Rights Watch (HRW) is a NGO that, since 1978, has been
dedicated to protecting the human rights of people around the world.
More recently, it has documented human rights abuses against injection
drug users in the United States. It found cases in California of police
stopping, harassing, arresting and searching clients of legal needle ex-
change programs and conscating their clean needles.
27
There is no
contradictory evidence to refute the public health value of sterile needle
exchange; public health experts agree that in addition to treatment for
drug use, the proper and consistent use of sterile needles is the most
eective method of preventing HIV among injection drug users. An
unfortunate truth is that IDUs who lack access to sterile needles do not
stop injecting, they simply resort to sharing needles and, to compound
this dangerous practice, engage in unsafe sexual practices another
conduit to HN infection.
HRW has held a number of roundtable discussions in California to
report its ndings regarding sterile needle exchange and to discuss
WHO IS INFORMING OUR YOUNG PEOPLE ABOUT AIDS 371
advocacy strategies with local organizations. In keeping with the mis-
sion to protect the human rights of all people, representatives from
HRW met with Los Angeles County Sheri and Oaklands chief of
narcotics enforcement to take steps to reduce police interference with
needle exchanges in their jurisdictions. In both cases, it was agreed to
start working groups in communities where the problem exists aimed at
reducing police interference with needle exchanges.
28
Linking NGOs with local community health and social services
organizations could mean a stronger nancial base with which to de-
velop youth-focused HIV prevention centers. Because most youth who
are HIV infected do not know it, they do not receive the care that could
prevent or delay the early damage of HIV infection. Testing is the
important rst step to getting the healthcare young people need. In
concert with testing, counseling must take place so that youth can learn
how to protect themselves.
29
Although federal and state initiatives and
resources are responding to the AIDS crisis, what is needed are inno-
vative responses that attract the attention of young people at-risk.
A logical course of action for NGOs committed to giving greater
attention to at-risk youth in the United States is to provide nancial
support to the development of HIV testing centers that are youth
friendly. The centers must be located in areas within the reach of street
youth who are poorly informed about HIV/AIDS and need to know
how to arrange for the necessary tests and what steps to take if they are
infected. Youth on the streets are wary of adults and of authority gures
in general; an attitude held by most marginalized young people. Youth -
focused programs would oer young people a place they can turn to for
advice from healthcare professionals who are used to working with
teenagers, who see them and the complexities in their lives without
reacting as disapproving adults.
New York City has received a strong response to the overwhelming
numbers of HIV/AIDS cases among their younger population. Planned
Parenthood of New York City (PPNYC), a NGO with an impressive
legacy with regard to its services for women across the nation, now
embraces the challenges of HIV/AIDS epidemic with clinical services,
education, and advocacy. It has included in its mission a community
outreach program called Project Street Beat that serves teens (as well as
women and men) who live and work on New York City streets.
30
Project Street Beat maintains a mobile medical unit and ve vans that
connect with people with the highest risk for contracting and trans-
mitting HIV/AIDS among them, teen IDUs, runaways, and homeless.
It oers, free of charge: condoms and HIV education, testing and
WINIFRED MONTGOMERY 372
counseling, and support groups in English and Spanish for people living
with HIV/AIDS. The city also oers a number of testing and infor-
mation centers primarily youth support organizations. Important in
purpose, these centers are not as likely to attract the young people
at-risk who live all aspects of their lives on the most dismal streets of
New York City. For example, Project Street Beats vans are fully
equipped and prepared to provide help where it is needed. The following
commentary validates the importance of such outreach projects:
The same behaviors that place particular adolescents and young
adults at-risk homelessness, and the dependency of the street
economy and its concomitant sex and drug risk behaviors interrupt
normal psychosocial development, making the age limit of 18 for
adolescent services one that creates a no-mans-land for young
persons between 19 and 24. These young adults are more receptive to
outreach treatment services designed for adolescents, and are at
substantially higher risk than their younger counterparts, but
chronologically above the cut o for services to children.
31
Services must be available to all young people; those within the age limits
for adolescent care and those who may no longer qualify but carry with
them into their young adulthood the dreadful symptoms of HIV infec-
tion. Project Street Beat appears able to provide these services to many
New Yorkers, but to insure that health and prevention services are
available for all young people, whether below or beyond the cut o age,
will require increased funding that CBOs may not be able to manage.
NGOs, already sensitive to the AIDS crises and actively engaged in
supporting selected AIDS prevention programs nationally and inter-
nationally, are in a position to help communities sustain ongoing sup-
port services in the United States, services that are responsive to the
needs of young persons at-risk and whose life chances diminish daily.
The Pzer Foundation Inc., for example, is an independent charitable
foundation; its focus is on community-based eorts to improve the
health of those of greatest risk.
32
The foundation awards Health Lit-
eracy Community Grants to priority populations, described as low
income, low literate, and culturally diverse. There is no guarantee that a
community organization will receive a grant, but it is worth pursuing as
one of many possible ways to create healthcare opportunities for at-risk
young people living with a life threatening disease with the potential to
devastate this and succeeding generations.
The Center for Aids Prevention Studies (CAPS) conducts local,
national, and international interdisciplinary research on methods to
WHO IS INFORMING OUR YOUNG PEOPLE ABOUT AIDS 373
prevent HIV infection and its consequences. An important component
of its work is to stimulate collaboration among academic researchers,
public health professionals, and CBOs.
33
CAPS began providing an
innovative HIV prevention project in Oakland, California in 1992. The
project, The Healthy Oakland Teens Project (HOT) was created to
reduce adolescents risk for HIV infection. HOT was successfully
implemented in an urban, ethnically diverse junior high schoo1.
34
The
project used peer role models to advocate for responsible decision-
making, healthy values and norms, and improved communication skills.
Ninth grade peer helpers, after extensive training, delivered interactive
sessions in seventh grade science classes. The focus of their activities was
on values, decision-making, communications, and prevention skills. The
peer helpers taught 300 seventh graders each year. During eighth grade,
the students received two additional sessions a reminder of what they
learned in the seventh grade. HIV positive young people visited each
eighth grade classroom to help the students understand that HIV
infection does happen to teenagers.
The Healthy Oakland Teens Project has concluded, but there is no
reason why similar projects could not be put in place across the country
with the support of those NGOs committed to national support of HIV/
AIDS prevention programs. CBOs must seek out the NGOs for the
funding they clearly need, to develop and maintain programs that
inform adolescents about safe and healthy life choices.
Conclusion
Informing young people at-risk about HIV/AIDS prevention programs
is a challenging task, in great part because of the diculty in bringing
young people and relevant programs together. Communities in which
there is high HIV/AIDS incidence are the places to put energy and
resources. There is evidence that young people at-risk can be reached
and will listen if the message makes sense to them, is linguistically and
culturally appropriate, and is given in settings or locations where youth
at-risk congregate or reside. Any prevention program that is developed
must involve them in the planning and implementation; they should be
able to take on some responsibility in the process that will ultimately
help them keep themselves risk-free. There are NGOs already working
in collaboration with CBOs to support street-community outreach and
group interventions. The work that PPNYC does to provide help
ranging from HIV testing to counseling is an example of eective
WINIFRED MONTGOMERY 374
collaboration that permits community services to reach out to youth at-
risk in those forgotten places in the city. The remarkable work CAPS
has done with young teens in Oakland, California attests the genuine
contribution NGOs can give to HIV/AIDS prevention programs in
communities of color. While there is no cure for the legion of victims of
AIDS, it is imperative that deliberate and ongoing comprehensive
programs are in place that inform youth at-risk about HIV and teach
them how to help themselves. Young people must understand they have
the power to prevent infection in themselves and others. HIV/AIDS
thrives among the poorly informed in society, most of whom are the
nations young people. It is possible to reach them, if the message is
relevant and extends to all those less than inviting places we are sure to
nd our youth at-risk.
Notes
1
Center of Disease Control Facts, Adolescents and HIV/AIDS. http://www.aegis.com/
les/cdc/factsheets/1998/adolesc.pdf (21 July 2004).
2
Youth and AIDS in the 21st Century, American Association for World Health, 2001
<www.thebody.com/aawh/wad2001/aected.html> (6 May 2004).
3
Randy Shilts, And the Band Played On: Politics, People. and the AIDS Epidemic. (New
York: St. Martins Press, 1987) xxi.
4
Greg Behrman, The Invisible People: How the U.S. Has Slept Through the Global
AIDS Pandemic. the Greatest Humanitarian Catastrophe of Our Time. (New York: Si-
mon & Schuster, 2004) 27.
5
Behrman, 2778.
6
Youth and HIV/AIDS: A Generation At Risk, AIDS Sourcebook. 2nd Edn.
(Health Reference Series, 1999).
7
What Works in HIV Prevention for Youth, The Body: An AIDS and HIV Infor-
mation Resource. <http://www.thebody.com/aac/youth_prev/chapter2.html> (30 July
2004).
8
The Body: An AIDS and HIV Information Resource.
9
What Are Adolescents HIV Needs? Center for AIDS Prevention Studies. 1999.
<http://www.caps.ucsf.edu/adolrev.html> (11 July 2004).
10
Aids Sourcebook, 2nd Edn.
11
American Association of World Health.
12
Charles Whitaker,The Shocking Truth About AIDS in Black America, Ebony. 56
2004, 134.
13
Whitaker, 134.
14
Zondra Hughes, Why sisters are the No.1 victims of HIV and how to avoid it,
Ebony, 59 2004 6470.
15
The Body: An AIDS and HIV Information Resource.
16
Hughes, 5470.
17
The Body: An AIDS and HIV Information Resource.
WHO IS INFORMING OUR YOUNG PEOPLE ABOUT AIDS 375
18
Human Rights Watch Monthly Update, Background: HIV/AIDS among young
people in the United States. http://hrw.org/reports/2002/usa0902/USA0902-03.htm
(6 July 2004).
19
Whitaker, 134.
20
Whitaker, 134.
21
American Association of World Health.
22
Human Rights Watch.
23
American Association of World Health.
24
Human Rights Watch Monthly Update.
25
How PPNYC Fights HIV/AIDS in New York City. Planned Parenthood of New
York City. http://www.ppnyc.org/services/aids_nyc.html (8 July 2004).
26
Human Rights Watch Monthly Update.
27
Human Rights Watch: An Open Letter to Local Ocials in the State of New Jersey.
http://hrw.org/english/docs/2004/06/24/usdom8945.htm (6 July 2004).
28
Human Rights Watch.
29
Planned Parenthood of New York City.
30
Planned Parenthood of New York City.
31
Phyllis Greeneld-Ross, HIV/AIDS and Children, Youth and Families. Child
Welfare, 77 2002: 2.
32
Pzer Health Literacy Initiative http://www.pzerhealthlitercy.com/commu-
nity_grants.html. (10 July 2004).
33
Center for AIDS Prevention Studies. Teens Teach Kids About HIV! <http://
www.caps.ucsf.edu/hotindex.html> (28 July 2004).
34
Center for AIDS Prevention Studies.
WINIFRED MONTGOMERY 376