National Commission on AIDS
WASHINGTON, DC ° UNITED STATES OF AMERICA

 
 

 

DECEMBER 1992 .

The Challenge of ©
HIV/AIDS in
Communities of Color

National Commission on AIDS
WASHINGTON, DC ¢ UNITED STATES OF AMERICA
 

The National Commission on Acquired Immune Deficiency Syndrome (AIDS) was
established by Public Law 100-607 "for the purpose of promoting the development of
a national consensus on policy concerning AIDS and of studying and making
recommendations for a consistent national policy” concerning the HIV epidemic. The
Commission is a bipartisan body whose members were appointed by the President, the
United States Senate, and the United States House of Representatives.

Additional copies of this report are available from the National AIDS Clearinghouse,
P.O. Box 6003, Rockville, Maryland 20849-6003, Tel. 1-800-458-5231, TDD 1-800-243-
7012, or the National Commission on AIDS, 1730 K Street, N.W., Suite 815,
Washington, D.C. 20006, Tel. 202-254-5125, TDD 202-254-3816.
NATIONAL COMMISSION ON AIDS

June E. Osborn, M.D., Chairman
David E. Rogers, M.D., Vice Chairman
The Honorable Diane Ahrens
K. Scott Allen
Harlon L. Dalton, Esq.

Don C. Des Jarlais, Ph.D.
Eunice Diaz, M.S., M.P.H.
Mary D. Fisher
Donald S. Goldman, Esq.

Larry Kessler
Charles Konigsberg, Jr., M.D., M.P.H.
The Honorable J. Roy Rowland, M.D.

Ex Officio
The Honorable Richard B. Cheney ©
The Honorable Anthony J. Principi
The Honorable Louis W. Sullivan, M.D.
Former Members
The Honorable Edward J. Derwinski

Earvin Johnson, Jr.
Belinda Mason

iit
 

COMMISSION STAFF

Roy Widdus, Ph.D., Executive Director
Thomas D. Brandt, M.LS.
Tracy L. Brandt
Megan L. Byrd
Adriana Carmack
Jason Heffner, M.Ed.
Sherell Jackson
Carlton H. Lee, Jr.
_ Frances E. Page, B.S.N., M.P.H.
Juanita O. Pendleton
Karen Porter, Esq.
Tracy Shycoff
Patricia Sosa, Esq.
Vicky M. Tsaparas

Report Development for The Challenge of HIV/AIDS in Communities of Color

Karen Porter, Esq.

Consultants for Community Profiles
Milagros Davila, M.P.H.
Larry Miike, M.D., J.D.
Ron Rowell, M.P.H.
Dawn Smith, M.D., M.P.H., M.S.

Glen Meyers (Summer Intern)

Editors

Linda C. Humphrey
Frances Porcher
TABLE OF CONTENTS >

PREFACE | . . Vii

ACKNOWLEDGMENTS | a oO ix
Part | The Challenge of HIV/AIDS in Communities of ©

Color | | rs

Introduction - Oo 1

Race and the HIV Epidemic es |

Epidemiology os rn’

Toward an Understanding of the Disproportionate Impact of
HIV/AIDS on Communities of Color 7

Societal and Community Influences: Looking Beyond .
HIV as Solely an Individual Behavioral Problem - dil

Assessing the Federal Response to the HIV/AIDS

Epidemic in Communities of Color 13
Prevention 13
Health Care 14
Clinical Trials | 18

The Challenge for Policymakers and Program
Implementers 23

Conclusion and Recommendations 2A
 

Part Il Community Profiles
The African American Community
The Hispanic/Latino Community
The Asian American and Pacific Islander Community
The American Indian and Alaskan Native Community
REFERENCES a
SELECTED BIBLIOGRAPHY
APPENDIX A: Witness List
APPENDIX B: Agendas
APPENDIX C: Planning Committees

APPENDIX D: Commission Documents

vi

27

27

38
48
56

65
PREFACE

During the past three years, the National Commission on AIDS has conducted
public hearings and site visits to foster a greater understanding of the challenges facing
communities of color as they confront the HIV/AIDS epidemic. These activities served
as a crucial part of the Commission’s effort to meet its statutory mandate of
"promoting the development of a national consensus on policy concerning AIDS."

Since December 1990 the Commission has collected information and advice
from hundreds of individuals within communities of color in forums that examined
issues specific to African American, Native American, Hispanic/Latino, and Asian
American/Pacific Islander communities. This report is a result of the Commission’s
finding that the HIV/AIDS epidemic presents unique challenges to communities of
color and, in this context, to all public policymakers.

For people of color, America’s racial divides are an ever-present reality—this
is particularly true for those who are HIV infected. The abiding and widespread
stigmatization of people of color creates enormous difficulties in mobilizing effective
responses to the HIV/AIDS epidemic. Racial inequality in the United States is
preeminent among the festering social problems that HIV highlights and upon which
the epidemic feeds. It forms the backdrop against which efforts to deal with
HIV/AIDS take place. Therefore, as a nation we have no choice but to take account
of race if we are to alter the course of the epidemic. If we succeed, we will have
learned much that is important to the country as a whole and of particular significance
to those who would safeguard the public’s health.

This report does not address the entire range of issues related to HIV disease
in communities of color. As a national advisory body, the Commission seeks to
highlight key issues for consideration by the President and Congress in the formulation
of HIV/AIDS policy. The Commission feels strongly that the challenges raised in this
report warrant diligent attention and present opportunities for collaboration in creating
the best possible response to the HIV/AIDS epidemic. Effective intervention requires
that each of us appreciates that communities themselves are significant units and that
they must be taken into account when developing programs geared toward the health
of the public as a whole.

June E. Osborn, M.D. David E. Rogers, M.D.
Chairman . Vice Chairman

vil
 

 

 

 

 

 
ACKNOWLEDGMENTS

During the past three years, the Commission has heard from individuals and
organizations in all parts of the country who are involved in programs of prevention,
care, and advocacy in communities of color. Through hearings and site visits from New
York City to Los Angeles, from Chicago to Florida, and from the Pine Ridge Oglala
Sioux Reservation to rural townships we have witnessed the remarkable commitment
of such people in the struggle to confront the HIV epidemic effectively. We must
express our sense of obligation as well as gratitude to all those who helped further our
understanding of the impact of AIDS in their communities. In particular, the
Commission thanks those who presented formal testimony. They are named in
Appendix A.

In addition, the Commission received valuable support and advice from a
number of individuals and entities without whose help an exploration of issues
confronting communities of color would not have been possible. They are: Jacob Gayle,
Ph.D.; Ron Rowell, M.P.H.; Mark Smith, M.D., M.B.A.; Aida Giachello, Ph.D.; Miguel
Gomez; Steve Lew, the board members of the National Minority AIDS Council; Mayor
Kurt Schmoke of Baltimore; Former Mayor Art Agnos of San Francisco; Mayor
Richard Daley of Chicago; chiefs, chairpersons, tribal leaders, and AIDS service
providers of the Pascua-Yaqui, Tohono O’cdham, Navajo, Comanche, Muskegee
(Creek), Mdewakanton Sioux, Oglala Sioux, Rosebud Sioux, Sac & Fox, Winnebago,
Chippewa, and Cherokee Nations; members of the Hispanic Hearing Planning
Committee (see Appendix C); COSSMHO; members of the Asian American and
Pacific Islander Planning Committee (see Appendix C); Frank Arcari, M.P.A.; Nat
Blevins, M.Ed.; Stacey Bush; Renée Peterson; Joan Piemme, R.N.; Jane Silver, M.P.H.;
Jeff Stryker; and Ellen Tynan, M.A.
 

 

 

'

_—
Part |

The Challenge of HIV/AIDS in Communities of Color

Introduction

The HIV/AIDS epidemic is composed of thousands of uniquely personal
tragedies. Behind every statistic is a flesh and blood human being whose life is filled
with pain and whose death will come much too soon. Yet, as a nation, we are
profoundly unable to identify with the majority of people living with HIV disease—they
remain faceless and their suffering distant and unreal.

This is especially true of people of color. Their plight as individuals has been
overshadowed by their identification with communities that have been pushed to the
margins of our society. Race, and to a lesser extent social class, is used to define
people as different, as "not like us,” and as therefore not the concern of the majority
of Americans.

We must recognize that the HIV/AIDS epidemic affects communities as well
as individuals. The term "community" is used here to describe people who have
particular characteristics in common, such as race or ethnicity, and to describe the
social and cultural networks they form. In this report, we have chosen to focus on four
such communities: African Americans, Asian Americans and Pacific Islanders,
American Indians and Alaskan Natives (Native Americans), and Hispanics/Latinos.

Three of these communities are defined by race. The fourth—the
Hispanic/Latino community—is a multiracial ethnic group. Socially and to some extent
by law, however, Hispanics/Latinos have been treated in much the same way as racial
minorities; therefore, we include this unique ethnic group along with the three
"minority" races, noting differences where appropriate.

Race and the HIV Epidemic

The term “race” has no fixed biological or anthropological meaning. In the
United States, people are lumped into one of four racial categories based broadly on
physical characteristics (principally skin color, hair texture, and facial features) and/or
ancestry. In so doing, we sometimes lump together cultures that have been historical
antagonists and have little in common except that they are viewed as indistinct by the
majority of Americans. The "Asian American/Pacific Islander" category is a striking
example, for in that official designation is coalesced four thousand years of human
history and conflict, brought only recently to American shores.

The Challenge of HIV/AIDS in Communities of Color 4
All races are marked by cultural heterogeneity. For example, within the Native
_ American designation are many nations (commonly called "tribes," a term that
minimizes sovereignty) that differ markedly from one another. As the current strife in
the former Republic of Yugoslavia makes abundantly clear, the same is true of white
"tribes." Although "race" and "ethnicity" are sometimes used interchangeably, the latter
usually refers to cultural commonality and is associated with people who once shared
a common geographic region and language. For example, the official designation
"Hispanic" is applied by the government to people of many nationalities whose racial
heritage is varied but who share common cultural roots.

"Race’ itself would be irrelevant to the HIV/AIDS epidemic if as a nation we
ascribed no special meaning to it or if people of all races were treated equally. That,
unfortunately, has not been the American way. For much of our history, racial lines
have been drawn not with an eye toward capturing and honoring that which is
distinctive about each grouping, but instead to assert control and maintain power.
Those who have had the power to define race have used it to construct inequalities and
maintain a racially stratified society in which persons who are nonwhite (people of
color) have been consigned to the bottom.

Until relatively recently, people of color were subjugated on the basis of race
and purposely, even forcibly, kept from competing with whites on terms of equality.
The specific history of each group differs: slavery, Jim Crow laws, lynching, and
segregation for African Americans; physical conquest, land expropriation, treaty
abrogation, and a guardian/ward relationship for Native Americans; racially restrictive
immigration quotas, Alien Land Laws, and internment for Asian Americans; land
annexation, occupational subordination, and forced mass repatriation for

Hispanics/Latinos. Although their specific historical experiences have varied, each of.

these communities of color has faced broad, sustained, systematic discrimination
designed to maintain racial inequality.

Of course, much has changed in recent decades, but the legacies of the past
stil) surround us. The cumulative effects of racial discrimination, the chronic lack of
access to resources, and the resulting underdevelopment of community infrastructures
have had lasting effects. For communities of color, the sense of economic inequity,
social distance, discrimination, and social stratification—of not being accorded full
equality—is undoubtedly strong and persistent. The relative impoverishment of African
Americans, Hispanics/Latinos, Native Americans, and many Asian Americans/Pacific
Islanders (contrary to the "model minority" myth) bears testament to the enduring
nature of yesterday’s burdens, and the difficulty of playing catch-up at a time when the
dominant society is apt to discount matters of race. In addition, barely concealed
appeals to racial hatred remain a staple of our national political life, promoting
prejudice and discrimination against people of color and reinforcing social and
institutional arrangements that limit opportunities for members of these communities.
| The continuing widespread stigmatization of people of color creates enormous
difficulties for effectively combatting the HIV/AIDS epidemic. Perhaps the greatest of
_ these is that communities of color fear that stigmatization and discrimination are likely
to increase as the public becomes more aware of the disproportionate number of
people of color who are infected with HIV. For these communities, disproportionate
representation raises the fear that they will be saddled with the disease—blamed for it,
stigmatized by it, and left to deal with it on their own. As one witness stated:

2 The Challenge of HIV/AIDS in Communities of Color
As the American public becomes increasingly aware of AIDS as a
significant health problem in the black community, there will both be
danger and opportunity. The opportunity is to deal comprehensively

-rather than haphazardly with the problem as a whole—to see it as a
social catastrophe brought on by years of economic deprivation and
to meet it as other disasters are met, with an adequacy of resources.
The danger is that AIDS will be attributed to some innate weakness
of black people and used to justify further neglect and to rationalize
continued deprivation. (Thomas, 1992)

In short, racial inequality in the United States is preeminent among the
festering social problems that HIV highlights and upon which thé epidemic feeds. It
forms the backdrop against which efforts to deal with HIV/AIDS take place.
Therefore, as a nation we have no choice but to take account of race if we are to alter
the course of the epidemic. If we succeed, we will have learned much that is of
importance to the whole country and of particular significance to those who would
safeguard the public’s health.

The Commission recommends that:

e Federal, state, and local governments should squarely confront problems
associated with racial inequality and its effect on the public health. Public
health officials should ensure that effective and equitable HIV policy,
program, and funding efforts are brought to bear in communities of color.

Epidemiology |

People of color have been affected by the HIV/AIDS epidemic since its
inception. The first report of AIDS in an African American man was made in June
1981; by August 1981, one in nine of the reported homosexual males with AIDS were
African American. The first case-series report on women with AIDS, published in
April 1982, described five women: three Hispanics/Latinas, one white, and one African
American. Indeed, as early as 1982, statistical evidence suggested that the epidemic
posed a disproportionately serious problem for African Americans and
Hispanics/Latinos and that most of the people at risk for infection in these groups
were of relatively low socioeconomic status.

In 1982 African Americans and Hispanics/Latinos accounted for just under
half of the males, more than three-fourths of the females, and almost two-thirds of the
children diagnosed with AIDS in the United States. Of all those who died of AIDS
from 1981 through 1990 (a total of 100,777 people), 28 percent were African American
and 15.7 percent were Hispanic/Latino. As early as 1988, HIV disease was the leading
cause of death among African American women aged 15 to 44 in New York State and
New Jersey (CDC, 1991b). African American and Hispanic/Latino men with AIDS
have comprised between 30 percent and 40 percent of all AIDS cases among adult and
adolescent men; the proportions of African American and Hispanic/Laiino women and
children with AIDS have remained considerably more than half of all cases among
women and children.

The Challenge of HIV/AIDS in Communities of Color 3
 

As of September 1992, reported U.S. AIDS cases totaled 242,146 and deaths
from AIDS totaled 158,243 (CDC, 1992e). HIV disease has continued to have a
profoundly disproportionate impact on African Americans and Hispanics/Latinos.
African Americans constitute 12 percent of the United States population, but account
for nearly 30 percent of AIDS cases—71,984 as of September 1992. Hispanics/Latinos
constitute 9 percent of the population, but account for 17 percent of AIDS
cases—40,353 as of September 1992. (See Figure 1.) Thus, African Americans and
Hispanics/Latinos together account for 46 percent of U.S. AIDS cases so far. Death
rates from HIV-related causes have been highest for African Americans and
Hispanics/Latinos. During 1990, the number of reported deaths per 100,000 population
was 29.3 for African Americans and 22.2 for Hispanics/Latinos, as compared with 8.7
for whites (CDC, 1991b).

Figure 1: Comparison of U.S. AIDS Cases (through September 1992)
and Estimated 1991 Population, by Race/Ethnicity

 

52.5%

  

29.7% 0.2% 11.8%
AIDS Patients U.S. Population
(242,146) (250,675,419)
CL] Whites [J African Americans i Native Americans

[CJ Hispanics/Latinos EJ Asian Americans/Pacific Islanders

SOURCE: Centers tor Disease Control/Nationat Center on Infectious Diseases/Division of HIV/AIDS.

The impact of the epidemic has been particularly profound on the African
American community. It is striking to note that in 1989 the age-adjusted HIV-related

death rate among African American males was three times that of white males (40.3

deaths per 100,000, as compared with 13.1 deaths per 100,000). African American

- females were nine times more likely to die from HIV than white females (8.1 deaths

per 100,000, as compared with 0.9 per 100,000). Accordingly, the years of potential life
lost per 100,000 population due to HIV was 177 percent higher for African American
males than white males and 796 percent higher for African American females than
white females (Department of Health and Human Services, 1992). :
Examination of trends in AIDS diagnosis and HIV infection shows that this
disproportionate impact is likely to continue. In 1991 the reported number of AIDS

4 The Challenge of HIV/AIDS in Communities of Color
cases rose 5 percent overall as compared to 1990. However, cases increased by 11.5
percent among Hispanics/Latinos, increased by 10.5 percent among African Americans,
and decreased by 0.5 percent among whites. African Americans and Hispanics/Latinos
were, respectively, nearly five and three times more likely to be diagnosed with AIDS
than were whites in 1991 (CDC, 1992c). The Centers for Disease Control noted that
during 1991 the proportion of reported cases rose most among women, African
Americans, Hispanics/Latinos, persons exposed through heterosexual contact, and
persons living in the South.

The number of reported AIDS cases does not, however, accurately portray the
scope of the epidemic in these communities because such figures represent only a
portion of the total number of people now infected with HIV. Although data are
uneven and sparse, there are strong indications that people of color are also
disproportionately represented among persons with HIV infection. One study in South
- Carolina has examined the distribution of newly identified HIV infection as compared
to that of AIDS cases. The proportion of new HIV infection in women (27%) and
African Americans regardless of gender (71%) was significantly higher than that
observed for AIDS cases—19 percent for women and 60 percent for African Americans
(CDC, 1992a).

The rates of HIV infection among applicants to the military and the Job Corps
also give cause for concern. With the exception of Asian Americans/Pacific Islanders,
for whom HIV antibody seroprevalence rates were comparable to whites, communities
of color had significantly higher prevalence of HIV infection, indicating a
disproportionate future impact of HIV disease. Since most persons with HIV infection
are unaware that they are infected, present rates of HIV transmission in racial/ethnic
groups are likely to parallel the disproportionate prevalence of infection. (See Figures
2 and 3.)

Figure 2: HIV Seroprevalence in Civilian Applicants for Military Service
by Sex and Race/Ethnicity, United States, October 1985-December 1990

 

Males Females

 

 

 

 

 

 

& i? .
gw ek S
ye x Y we

SOURCE: Department of Defense; CDC, 1991 National HIV Serosurveillance Summary.

The Challenge of HIV/AIDS in Communities of Color 5
 

Figure 3: HIV Seroprevalence in Job Corps Entrants
by Sex and Race/Ethnicity, January 1988-December 1990

Males Females

 

 

0.60

0.50 —

    
 

HIV Seroprevalence (percent)
o Se 2e 2
o «6 8—hl6ShUS
! { ! !

4.

 

 

°

°

°o
|

SOURCE: Department of Labor; CDC 1991 National HIV Serosurveillance Summary.

_ In addition, estimates of the percentage of youth in the United States who
have been or will be left motherless by the HIV epidemic suggests that by the year
1995, 17 percent of U.S. children and 12 percent of U.S. adolescents whose mothers
die will lose their mothers to HIV/AIDS. More than 80 percent of all youth whose
mothers have died or will die of HIV/AIDS (an estimated 36,560 youth) are offspring
of /African American or Hispanic/Latina women (Michaels and Levine, 1992). .

In contrast to the experience of African Americans and Hispanics/Latinos,
Native Americans and Asian Americans/Pacific Islanders are as yet underrepresented
among AIDS cases in proportion to their numbers in the total population. As of
September 1992, Asian Americans/Pacific Islanders, who make up 3 percent of the
US. population, accounted for 0.6 percent of the AIDS cases so far. As of September
1992, Native Americans accounted for 0.8 percent of the U.S. population and 0.17
percent of the AIDS cases reported to the Centers for Disease Control.

While the number of AIDS cases in Asian American/Pacific Islander and
Native American populations is relatively low at present, these communities are still
in the early stages of a growing HIV epidemic. Because of their relative insularity,
which magnifies the effect of infectious diseases once they take hold, the course of the
epidemic in these communities could come to resemble that of the African American
and Hispanic/Latino populations if effective prevention interventions are not brought

to bear. Focusing on the relatively low number of Native Americans and Asian

Americans/Pacific Islanders with AIDS has resulted in complacency and a lack of

attention to efforts targeting these communities both by public health officials and by

community members. Even more troubling, the relatively low number of cases has sent
an inaccurate message to these communities that they do not have to worry about
AIDS.

6 | The Challenge of HIV/AIDS in Communities of Color
Careful attention should be given to how HIV/AIDS statistics are interpreted
and used. An effort must be made to assure that populations that are currently
underrepresented are not overlooked in HIV prevention efforts. If we wait to see large
numbers of AIDS cases before we begin targeted HIV prevention, we will have missed
a brief opportunity to prevent those cases from ever occurring.

It is important to note that from 1989 to 1990 the number of Native American
AIDS cases increased faster than cases among any other ethnic or racial group (Metler,
Conway, and Stehr-Green, 1991). AIDS cases among Native Americans rose 23
percent, as compared to 13 percent for Hispanics/Latinos, 12 percent for African

- Americans, and 2.5 percent for whites. Additionally, the number of actual AIDS cases
may be significantly undercounted in these communities. A Centers for Disease Control
study of death certificates and AIDS service organization records in Los Angeles and
Seattle reported that between two-thirds and three-fourths of Native American AIDS
cases were misrepresented as white or Hispanic/Latino (Conway, 1990). Additionally,
studies of applicants for military service from 1985 to 1990 indicate that Native
American male recruits have a seropositivity rate twice that of white male recruits.

There is currently a dearth of information regarding the HIV/AIDS epidemic
among Asian Americans/Pacific Islanders and Native Americans. Demographic
information by racial group and nationality is critically needed for health planning and
public policy use.

The Commission recommends that:

e The Centers for Disease Control and Prevention should review the adequacy

of demographic information regarding HIV/AIDS currently available by race,
ethnicity, and _ nationality, particularly with regard to Asian
Americans/Pacific Islanders and Native Americans. Additionally, the
National Center for Health Statistics should make information available
regarding HIV/AIDS knowledge, attitudes, beliefs, and behaviors among
Asian Americans/ Pacific Islanders and Native Americans.

e The federal government should work with the states to establish and support
foster care programs for children with HIV infection and noninfected youth
orphaned by the loss of parents to HIV/AIDS. Federal and state government
should also support programs designed to assist family members in caring
for children whose lives have been affected by HIV/AIDS.

Toward an Understanding of the Disproportionate Impact of HIV/AIDS on
Communities of Color

In discussing race and its relevance to the HIV/AIDS epidemic, it is important
to stress that there is no evidence that race is a biological risk factor for HIV infection.
That is, even though greatly disproportionate numbers of African Americans and
Hispanics/Latinos have developed AIDS, there is no demonstrated genetic reason why
HIV/AIDS has had a disparate impact on these communities. Therefore, in trying to
understand racial differences in HIV seroprevalence, in AIDS diagnosis, and in the
length of time from diagnosis to death, it is important to look for social explanations.

The Challenge of HIV/AIDS in Communities of Color | 7
Social and Economic Factors

Currently, it is impossible to determine the extent to which differentials in
HIV/AIDS can be explained by differentials in income, education, and other social and
economic differences between the races. However, even though we cannot sort out the
complex interactions among these factors, we do know from past experience that
disease incidence is associated with particular social arrangements, especially economic
inequality. Thus, while HIV is transmitted by individual behavior, we can infer that
social and economic factors have a powerful influence on how individuals behave as
well as on the overall shape of the epidemic.

It has often been demonstrated that underdevelopment (comparatively fewer
economic, material, and organizational resources), unemployment, poverty, and
illiteracy are correlated with decreased access to health education and to health care,
which in turn result in poor health prospects and increased risk of disease. These
factors, combined with high rates of sexually transmitted diseases and injection drug
use, favor the spread of HIV.

Over all, people of color fare poorly in indices that determine socioeconomic
status. On average, people of color have higher rates of unemployment and lower
incomes than white Americans. In 1991 the poverty rate among whites was 11.3
percent, among Asian Americans/Pacific Islanders it was 13.8 percent, among
Hispanics/Latinos it was 28.7 percent, and among African Americans it was 32.7
percent (Bureau of the Census, 1992).! In September 1992 the unemployment rate was
6.7 percent for whites, 11.9 percent for Hispanics/Latinos, and 13.7 percent for African
Americans (Department of Labor, 1992). In 1991 the median income was $15,332 for ©
whites, $14,754 for Asian Americans/Pacific Islanders, $10,877 for Hispanics/Latinos,
$10,542 for African Americans, and $10,503 for Native Americans (Bureau of the
Census, 1992).

As noted above, low income and poor health are strongly linked. Persons with
low incomes generally experience a higher incidence of illness and a poorer survival
rate than do the economically advantaged. The association of poverty, underdeveloped
community structures, and disease is well demonstrated by the impact of the HIV
epidemic in communities of color. Poor people of color often are isolated from all but
the most rudimentary health care. Urban public hospitals that serve a high proportion
of African Americans and Hispanics/Latinos are often overcrowded and are
increasingly less able to meet the growing needs of the communities they serve. Poor
people of color are less likely to seek early treatment for HIV infection, are likely to
have been less healthy when they contracted the virus, and are likely to have more
advanced symptoms when they present themselves for treatment. Consequently, African
~ Americans and Hispanics/Latinos tend to die sooner from AIDS.

Another disease illustrates the links between race, poverty, and disease.
Tuberculosis (TB) is a disease caused by a bacterium known as Mycobacterium
tuberculosis. Transmission of this organism occurs most commonly in cough-generated
air droplets from a person with active (infectious) pulmonary tuberculosis.
_ Transmission occurs more frequently where persons are routinely in close proximity
with inadequate ventilation. Such conditions—crowded housing, shelters for the

 

! The Census Bureau has not calculated the poverty rate for Native Americans
owing to the smallness of the sample size.

8 The Challenge of HIV/AIDS in Communities of Color
homeless, prisons—are disproportionately shared by persons of color. Exposure to the
causative organism for tuberculosis may result in infection followed fairly rapidly by
active disease, or in latent (nontransmissible) infection, which may last for years. About
5-10 percent of immunologically normal persons who are latently infected will later in
life develop active tuberculosis.

In the United States, African Americans, Hispanics/Latinos, and Native
Americans have historically had higher rates of TB than whites, probably because the .
conditions under which they live favor higher rates of infectious exposure. The present
social conditions of a disproportionate number of people of color and their relative lack
of access to curative care also perpetuate the cycles of exposure—disease—exposure and
exposure—latent infection—disease—exposure. In recent times,. Asian and Pacific
Islander immigrants to the United States have had high rates of tuberculosis because
of high rates in their countries of origin (which result in high rates of latent infection
and subsequent reversion to disease). :

Roughly fifty percent of persons infected with both HIV and M. tuberculosis
are likely to develop active tuberculosis within two years, compared with the lifetime
risk of TB of 5-10 percent for persons infected with M. tuberculosis alone. Hence
exposure to or latent infection with M. tuberculosis is a significant risk for persons with
HIV infection. Thus, many persons of color are in triple jeopardy: from a greater
likelihood of latent infection with M. tuberculosis, from a greater likelihood of HIV
infection, and from a resultant greater likelihood of developing active tuberculosis.

Injection Drug Use

Injection drug use has played a significant role in the disproportionate impact
of AIDS on African Americans and Hispanics/Latinos. In these communities the
proportion of AIDS cases attributable directly to injection drug use is four times that
for whites (40 percent, as compared to 9 percent). Similarly, of persons with AIDS
whose disease is linked to injection drug use, fully half have been African American
(as of 1992) and another 29 percent have been Hispanic/Latino (CDC, 1992e).

According to National Institute on Drug Abuse estimates, there are 1.1 to 1.3
million injection drug users in the United States, all of whom are potentially at risk for
HIV infection, as are their sexual partners and children (NIDA, 1990). The Public
Health Service estimates that in communities with large populations of illicit drug
users, such as New York City, between 30 percent and 40 percent of injection drug
users aged 15 through 24 are infected with HIV (PHS, 1990). Furthermore, numerous
studies have shown the HIV infection rates among African American and
Hispanic/Latino drug users to be higher than among white drug users.

Although members of subordinated racial and ethnic groups are not the only
people who use illicit drugs, in the United States injection drug users tend
disproportionately to be African American and Hispanic/Latino. The National
Household Survey on Drug Abuse found that African Americans are twice as likely as
whites to have used drugs intravenously. While the reasons for this greater prevalence
are not fully understood, several factors seem implicated.

Certainly significant is the fact that over the last several decades, African
Americans have migrated to and been abandoned in inner-city areas, where drug
trafficking is heaviest. Although the injection of illicit drugs is thought to have begun
in the American South (O’Donnell and Jones, 1968), centers of narcotic distribution

The Challenge of HIV/AIDS in Communities of Color 9
historically have been located in impoverished urban areas of the northeast where they
are less likely to generate a police response or political opposition. As a result,
injection drug use has been disproportionately associated with northeastern urban life.
It is estimated, for instance, that between one-fourth and one-half of injection drug
users live in New York City alone (Turner, Miller, and Moses, 1989), a
disproportionate number of whom are African American and Hispanic/Latino
(Friedman et al., 1987). As some researchers have suggested, African American
injection drug use has been "a concomitant of urbanization" (Courtwright, Joseph, and
Des Jarlais, 1989). As a result of the mass migration of the African American
population from the rural South to urban centers, African Americans, who prior to
World War II were not considered heavy drug users, increasingly were exposed to
narcotics and to conditions that spawned illicit narcotic use (Singer, 1991). Unlike the
immigrants who lived in these same or similar neighborhoods before them, low-income
African Americans have been unable to distance themselves from decaying inner-city
conditions in which heroin has become a staple of the local economy. According to
researchers, "by 1970, African-Americans had become an urbanized population, even
more.so than the U.S. population generally" (Singer, 1991). Demographic trends
indicate that one of the fastest-growing groups of African Americans are those who are
poor and live in census-defined poverty areas of central cities (Bureau of the Census,
1992).

Asimilar set of circumstances has occurred in the Hispanic/Latino community,
especially with regard to Puerto Ricans. In the 1950s and 1960s, Puerto Rico’s shift
from an agricultural to an industrial economy brought about an increase in
migration—from the island to the continental United States. In search of jobs, Puerto ©
Ricans settled in urban areas where they were likely to find employment as unskilled
laborers. Their experience in these urban areas was not unlike that of African
Americans. In these urban areas, Puerto Ricans often found open drug markets,
oppressive conditions, and few economic opportunities. As one researcher observed,
"Heroin is seemingly everywhere in black and Puerto Rican ghettos and young people
- are aware of it from an early age” (Waldorf, 1973). Furthermore, during the late 1970s
and early 1980s there was a substantial increase in the supply of both heroin and
cocaine in many urban areas. This led to increases in the use of these drugs, primarily
among persons who already had histories of injecting drugs.

A permanent African American and Hispanic/Latino "ghetto," characterized
by a virtually unchecked heroin trade, widespread unemployment, and poverty, among
other factors, has assured that urban African. American and Hispanic/Latino
populations suffer high rates of addiction to injection drugs (Courtwright, J oseph, and
Des Jarlais, 1989).

Not only is injection drug use. disproportionately high among African
Americans and Hispanics/Latinos within the universe of injection drug users, HIV
infection is also highest among these same groups. The reasons are several. It is
increasingly clear from a decade of research that where sharing of injection equipment
is common, frequency of injection is positively correlated with likelihood of HIV
' infection. A study in New York City found that white users inject less frequently than
African Americans or Hispanics/Latinos (Friedman, Des Jarlais, and Sterk, 1990). In
addition, the use of shooting galleries—places where one may rent reusable drug
injection equipment—provides a mechanism for the spread of HIV to large numbers
of other injection drug users and has also been linked to HIV exposure. White users
patronize shooting galleries less often than other groups (Des Jarlais et al., 1989). Also,

10 The Challenge of HIV/AIDS in Communities of Color
HIV may have entered African American and Hispanic/Latino injector groups earlier
than white groups and may have saturated these drug-using communities, resulting in
a high prevalence of infection in the local drug population network (Schoenbaum et al.,
1989).

Significantly, injection drug use has played a major role in spreading HIV
among heterosexuals and newborn babies. Of all AIDS cases attributed to heterosexual
contact, 53 percent involved persons who reported sexual contact with an injection drug
user. Three-fifths (59%) of all heterosexual AIDS cases related to injection drug use
are African American. Whites represent 21 percent of these cases and
Hispanics/Latinos represent another 19 percent. In addition, perinatal transmission
associated with a mother’s exposure to HIV owing to injection drug use represents 40
percent of all cases among children. Of these cases three-fifths (59%) are African
American, one-fourth (25%) are Hispanic/Latino, and one-seventh (15%) are white.
Perinatal transmission associated with a mother’s exposure to HIV owing to sexual
contact with an injection drug user represents 17 percent of all cases among children.
Of these cases African Americans represent 45 percent, Hispanics/Latinos 39 percent,
and whites 15 percent (CDC, 1992e).

Societal and Community Influences: Looking Beyond HIV as Solely an
Individual Behavioral Problem

As noted earlier, AIDS cannot be seen as solely an individual behavioral
problem. In communities of color, attention must be paid to the social and economic
setting of risk behaviors. To the extent that poverty and unemployment are risk factors,
proposed interventions must take these conditions into account. Where communities
are unable to support healthy behaviors, AIDS intervention efforts will not work. As
one witness Stated,

The one thing we know about poverty in this country in the last
twenty years is that it has really altered the structure of many of the
neighborhoods in the United States. Blacks and Latinos are
increasingly concentrated in areas that are becoming poorer and
_poorer, and with that concentration has come a tremendous increase,
not just in HIV infection, but a whole host of other serious social
problems ranging from crime to just about anything that you can
possibly describe. .. . Until we’re able to stabilize these communities,
there simply is no place for the seed of the individual prevention
measure to take fruit. Unless we’re able to do something dramatically
to alter the economic structure of these neighborhoods, we really fear
very, very strongly that the things we have embarked on for the last
nine or ten years simply are not going to see the kind of results that
we desire. (Fullilove, 1991)

We cannot continue to teach individuals about the dangers of certain behaviors
as if they choose to engage in them indiscriminately. We would do well to take account
of social forces and institutions that undermine individuals’ capacity to adopt and
sustain a healthy lifestyle. It is difficult to change practices effectively without changing
circumstances. As another witness stated,

The Challenge of HIV/AIDS in Communities of Color 11
The first decade of AIDS was characterized by an almost single-
minded focus on interrupting the cycle of HIV transmission. Our
approach to AIDS prevention reflected an illusion that we as a society
are all educated individuals eager to do the right thing if only we have
all the appropriate information. We cannot expect a national
prevention campaign based only on information alone to change
recalcitrant problems. The spread of HIV has highlighted the complex
relationship among social class, gender, and race in a society where
health care facilities are impoverished, access to care is inadequate,
and prevention technology is devalued. We must enter the second
decade of AIDS with the knowledge that existing public health efforts
have failed to stop the disproportionate spread of HIV infection.
(Thomas, 1992)

This is not to say that AIDS prevention efforts should wait for a solution to
our overall social ills. Obviously, they cannot. But as with other facets of the epidemic,
if we use this tragic stimulus of HIV as a prod to readdress old problems that have
been bandaged or ignored, we have the opportunity to emerge a stronger society.

The Commission recommends that:

e Public health officials should work with researchers, health professionals,
and community-based service providers to gain a better understanding of the
role of cultural and socioeconomic factors in the transmission of HIV, the
disease process, and access to care. Information gleaned from these efforts
should be taken into account in designing HIV prevention messages, services,
and programs, and in providing expanded treatment opportunities.

12 The Challenge of HIV/AIDS in Communities of Color
Assessing _ the Federal Response to the HIV/AIDS
Epidemic in Communities of Color

Prevention

In this second decade of the HIV epidemic, there will be an increasing need
to supplement individual behavior change strategies with a concept of intervention that
focuses on the community as a whole. Interventions aimed at changing the norms of
entire communities are among the most promising HIV prevention strategies. These
interventions have proven to be effective in promoting a variety of health behaviors,
such as family planning, cardiovascular risk reduction, and smoking cessation.

For such interventions to be successful, health educators must first understand
the behavior patterns and cultural norms of the community. More often than not,
health departments and AIDS service organizations have failed to integrate such
knowledge into their planning and programming processes. This is especially true with
regard to the Native American and Asian American/Pacific Islander communities.

Improving channels of communication with communities of color is crucial to
successful prevention efforts. For example, efforts at communication must employ
appropriate language. Language is more than a catalog of words and grammatical
rules; it is an integral part of culture. The values, beliefs, incentives, hopes, and fears
of a people are absorbed in it. For cultures constantly under siege, both by subtle and
by obvious forces, language is a means by which the community preserves its distinct
way of life and makes sense of its experience, history, and struggle. Thus,
understanding the importance of language and ascertaining its potential as a point of
entry to a community is essential to public health efforts.

Health education must be developed in a manner that properly informs the
community about the benefits and risks of HIV interventions and treatments. Health
education must also empower the community by providing sufficient guidance and
- technical information for communities to undertake public health efforts themselves.
The potential for misinformation must be explicitly recognized and addressed.

The Commission recognizes that the Centers for Disease Control and
Prevention (CDC) has worked hard to listen to, understand, and address concerns
voiced by people of color. In many instances the CDC has borne the burden of the
frustration individuals and communities have felt in the face of government failure to
respond adequately to the threat of HIV in communities of color. In particular, the
CDC has played an important role in responding to community suggestions on how to
improve surveillance efforts and prevention activities. In addition, the CDC has
provided much-needed funds to programs serving racial and ethnic populations at risk
of HIV infection and worked to establish credibility for the targeting of resources to
specific populations in need.

With regard to programs sponsored by the CDC, communities of color have
benefitted most from those that have provided direct funding to national minority
organizations and to community-based organizations. These programs have been
important because they have helped communities of color embrace HIV/AIDS as a

The Challenge of HIV/AIDS in Communities of Color | 13
serious concern, enabled better targeting of resources, and in many instances provided
desperately needed resources to direct service providers.

Federal efforts to design, fund, and implement prevention programs that reach
communities of color have not, however, been without problems. First, serious
questions have been raised as to whether the populations most at risk for AIDS within
communities of color are being appropriately targeted. For example, fully half of
African American and Hispanic/Latino male adults with AIDS are men who have sex
with men. Yet, HIV services in communities of color are often not designed to reach
them. Since the same can be said of services in predominantly white gay organizations,
gay men of color frequently are left in limbo.

Second, funds allocated by Congress and budgeted by the CDC for programs
in communities of color have simply not been enough to support the intense and
‘ sustained national effort needed to ensure that effective prevention efforts reach these
communities.

Third, the CDC must act more vigorously to provide sustained funding or help
organizations build the capacity to effectively seek alternative funds from other sources.
In addition, program dollars have been awarded without ensuring that the necessary
technical assistance for fiscal management is provided to help organizations comply
with federal regulations and effectively manage these scarce resources.

Fourth, national education programs such as the "America Responds to AIDS"
campaign have been generally ineffective in reaching communities of color. The
information provided is often vague and targeted toward an anonymous general public.

The Commission recommends that:

e The Centers for Disease Control and Prevention should ensure that the
prevention and education needs of persons of color who engage in high-risk
behaviors are appropriately addressed by current and future prevention
initiatives and funding efforts. Programs specifically targeted toward men of
color who have sex with other men, toward injection drug users, and toward
women are needed.

e Federal, state, and local governments should join forces with the private
sector in providing long-term support to community-based organizations
serving communities of color. As part of this effort, the U.S. Public Health
Service should expand and promote comprehensive and integrated programs
for technical assistance to and capacity building in these communities.

Health Care

There are many people of color in the early phases of HIV disease who could
benefit from treatments designed to retard the onset of symptoms, as well as from
social and mental health services. Unfortunately, many of these people have no point
of entry into the health care system. Access to care for people of color has been
impeded both by a lack of sufficient health insurance coverage and by a dearth of
appropriate health services.

People of color historically have had difficulty in gaining access to and paying
for primary care services. In many instances, limited income precludes the purchase of

14 The Challenge of HIV/AIDS in Communities of Color
insurance. For example, individuals who are employed in low-paying or minimum wage
jobs in the service industry often do not have any health insurance coverage, or at least
not adequate coverage. For those who are forced to rely on public programs, Medicaid
eligibility criteria in some states are very restrictive (GAO, 1992). Persons living with
HIV disease can attest to the difficulties they confront in the absence of insurance.
Even those with insurance may exhaust the coverage and be left with limited
government support and community assistance.

Lack of access to health care has many ramifications. Delay in seeking care
may result in complications and more clinically serious and costly conditions. As with
other chronic diseases, waiting until symptoms are persistent or severe can result in
preventable morbidity and can shorten survival time. In the era of Pneumocystis carinii
pneumonia prophylaxis, aggressive TB therapy, and antiretroviral therapy, health care
is optimally begun early in the course of HIV infection. However, many people of color
are diagnosed with HIV disease for the first time only when serious symptoms of
opportunistic infections develop.

In order to more adequately meet the health needs of people of color living
with HIV disease greater priority must be given to delivery of comprehensive services
and primary care, with a focus on prevention of illness, early intervention in the disease
process, continuity of care, and coordinated service delivery, as well as better
integration of medical and social services. Improvements in these areas will depend in
part on achieving a better supply and distribution of primary care providers.

Unfortunately, for many medically underserved communities the only access
to care is the emergency room or a hospital bed. This situation is both economically
foolish and medically unsound. Much greater priority should be given to the
development of outpatient ambulatory care services. When such services are available
persons with HIV disease are able to avoid inpatient hospitalization during much of
the course of their illness, thus lowering their medical costs and increasing their sense
of control over their lives. For example, many drugs previously administered on an
inpatient basis during lengthy hospitalizations can safely be offered in a clinic setting.

Increasingly, hospitals are giving higher priority to providing ambulatory care
services that focus, in particular, on better primary care delivery. The availability of
primary care services can also be facilitated by ensuring that community-based health
services such as community health centers, migrant health centers, and clinics funded
by the Indian Health Service are given increased support. In many communities of
color, such centers provide primary care services as well as mental health and social
services. Such care is cost-effective as well as more accessible to patients.

Awareness that HIV disease is a serious threat to our nation’s young people
is growing. The number of teenagers with AIDS almost doubles each year. An
estimated 75,000 teenagers are now infected with HIV. Over 20 percent of all reported
AIDS cases are among individuals in their teens and twenties, most of whom were
infected during adolescence. The majority of these cases are among young adults of
color. Of all AIDS cases among 13- to 19-year-olds, approximately 38 percent are
African American and 20 percent are Hispanic/Latino (CDC, 1992b). Meeting the
health needs of the adolescent population will require innovative approaches to the
design of health services that address the host of risk factors leading to behaviors that
place individuals at risk of HIV infection. Also needed are targeted initiatives such as
improvements in school-based health, mental health, and social services.

As the epidemic grows and resources become chronically strained, it is
increasingly important to maximize available funding by ensuring that health and social

The Challenge of HIV/AIDS in Communities of Color * 15
service delivery systems are coordinated. This has become particularly true in inner
cities where available resources fall far short of what is needed to confront the HIV
epidemic effectively. Thus, state and federal funding sources have encouraged localities
to develop consortia and institutionalize mechanisms for sharing resources. Funds made
available under the Ryan White CARE Act are the only resources targeted for
addressing the crisis in HIV care brought on by the growing epidemic. The CARE Act
provides critically needed relief to cities hardest hit by the HIV epidemic and to all
states. Title I of the CARE Act distributes "emergency assistance” to metropolitan
areas with more than 2,000 diagnosed AIDS cases. Each eligible area is required to
establish an HIV planning council, whose task it is to set service priorities and to
allocate resources for health care and support services for the geographic area, across
all affected populations and subpopulations. Title II of the CARE Act provides funds
for states to respond to an array of primary care needs. Such state responses include
the creation of HIV care networks in both urban and rural areas, drug reimbursement,
COBRA premium payments, and the delivery of home care services. Each state must
document that 15 percent of their funds are targeted to women and children with
HIV/AIDS, the vast majority of whom are people of color. Title III of the CARE Act
provides crucial early intervention, primary care, and mental health services through
community migrant and homeless health centers, as well as sexually transmitted
disease, family planning, and tuberculosis clinics.

The extent to which CARE Act funds have resulted in greater access to quality
care has not yet been adequately documented. It is clear, however, that the
effectiveness of the CARE Act in providing relief to cities and states hard hit by HIV
has been hampered by inadequate funding levels. The shortfall between needed and
available funds has been particularly detrimental to communities of color, where
resources are needed for financial relief of institutions providing care to underserved
and indigent patients. Strained public hospitals and health clinic infrastructures, which
for too long have borne the burden of HIV care, require urgent and ongoing
assistance, both to continue providing current services and to expand to meet the rising
demands of both the HIV positive and seronegative populations. The Commission
strongly believes that the Ryan White CARE Act should be funded at the fully
authorized level. While comprehensive health reform is desperately needed in order
to rescue a health care delivery system heading for collapse, full funding of the Ryan
White CARE Act can help to fill the breach by creating cost-effective alternatives to
hospitalization.

By establishing HIV Health Service Planning Councils and local consortia, the
CARE Act creates an innovative community partnership process by which affected
individuals and community-based organizations are empowered to participate in the
decision-making process of setting priorities and allocating resources. While many
communities participating in the planning process have reported frustrations regarding
the adequacy of efforts to ensure that all communities are represented, this
nontraditional model for decision-making has challenged many of the existing power
structures and worked increasingly to allow community entities to share responsibility
for determining how HIV health services are provided. The Commission is encouraged
that many of these frustrations are being addressed by efforts to ensure that
communities of color are adequately represented in the planning process and
appropriately served by the resources available. In recent guidance to grantees, the
Health Resources and Services Administration has made clear its commitment to
increasing the objectivity of local needs assessment and subsequent resource allocation

16 The Challenge of HIV/AIDS in Communities of Color
decisions, and to ensuring a participatory HIV Health Services Planning Council
process. The Commission believes that it is important to explore the Ryan White
CARE Act planning council experience and the role of representatives of communities
of color as participants. This must be done in order to begin to understand what these
communities have set as priorities and why, how they perceive their funding needs and
their relationship to other communities, the nature of their organizational
infrastructure, and the capacity of the Ryan White CARE Act to help them provide
services both in the present and in the future.

The Commission believes that in addition to ensuring the availability of
primary care services, it is also important to recognize that people of color living with
HIV disease may not have sufficient information about the benefits of early care or
may not learn of their HIV infection until far along in the disease process, despite
contacts with health care providers. It is important that people of color be educated
about the availability and effectiveness of early care. Thus far, educational efforts have
focused on information about transmission risks and have emphasized the mortality of
AIDS. Not enough effort has been made to communicate to people of color that many
of the manifestations of HIV disease are amenable to prophylaxis and/or treatment.
In addition, information about treatment options may be inadequate.

Many people of color are initially tested for HIV because of institutional
requirements. Testing is often a condition for admission to drug treatment programs
and military service, required within the criminal justice system, offered by legislative
mandate (for example, to prenatal patients), or routinely practiced because of provider
perception of high risk (for example, in hospital emergency and operating rooms).
Except in the case of the military, the attendant counseling is often cursory, and testing
frequently is not linked to the provision of medical care for HIV mntechion,
Improvement on both counts is needed.

Increased emphasis also should be placed on training and equipping health
care practitioners in communities of color to provide care to persons infected with
HIV. The federal government has made important strides in this area through the
development of the AIDS Education and Training Centers and through increased
efforts by the National Institute of Allergy and Infectious Diseases (NIAID) to provide
updates on developments in HIV care to physicians. The need continues, however, for
better coordination of government dissemination of the results and implications of
clinical research. Also needed is better information on the regulatory status of
investigational therapies and their availability, for example, through expanded
access/parallel track mechanisms. Information should also be disseminated on
epidemiologic trends, such as those in tuberculosis, which may affect clinical
management of persons with HIV. An effort should be made to target physicians who
practice in communities of color. Similarly, there must be increased assistance to
schools and professional associations that traditionally have trained and educated
minority health professionals in order to assure that the populations they serve have
the benefit of current developments in AIDS care and treatment. The importance of
these efforts cannot be overstated, given the growing complexity of HIV-related care
and treatment.

The Commission believes there is an urgent need to improve the availability
of primary care services in communities of color. To accomplish this a multifaceted
approach is needed, including but not limited to the following efforts.

The Challenge of HIV/AIDS in Communities of Color 17
e The President and the Congress should increase support for community-
based primary care, including community health centers, migrant health
centers, and clinics funded by the Indian Health Service to ensure delivery
of prevention and care services, including those for HIV/AIDS.

e The President and the Congress should fully fund the Ryan White CARE Act
and ensure that communities of color are adequately represented in the
_ planning process and appropriately served by the resources available.

e The President and the Congress should provide additional incentives for
health care professionals to work in underserved areas by increasing support
for programs such as the National Health Service Corps and programs such
as the Disadvantaged Minority Health Improvement Act of 1990 targeted
specifically at increasing the number of minority health care professionals. |

e Likewise, state and local jurisdictions should increase support for public
hospitals and other locally supported components of comprehensive primary
care systems that deliver HIV prevention and care services.

e Additionally, the Health Resources and Services Administration should
assess the capacity of special initiatives, such as the Ryan White CARE Act
and the Health Care for the Homeless Program, to develop and support a
strong primary care infrastructure in communities of color.

oe The federal government should provide adequate resources to community
programs designed to improve access to health care and support services
and to prevent the spread of HIV among adolescents. Passage of legislation
similar to the proposed Comprehensive Services for Youth Act of 1992 would
foster coordination and collaboration: among educators, health care
providers, and community-based organizations through the development and
operation of citywide and statewide youth service center systems.

© The Agency for Health Care Policy and Research, the Health Resources and
Services Administration, and the National Institute of Allergy and Infectious
Diseases should conduct a review of current efforts to educate physicians on
developments in HIV/AIDS care and aggressively pursue methods to improve
the quality of HIV/AIDS care. In order to assure that people of color living
with HIV receive the benefit of current developments in HIV/AIDS care these
agencies should strive to coordinate better the dissemination of information,
target physicians who practice in communities of color, and work intensively
with schools and professional associations that have traditionally trained
minority health professionals.

Clinical Trials
Historically, the National Institutes of Health-sponsored AIDS Clinical Trials

Group (ACTG) protocols have included significantly lower numbers of people of color
living with HIV than their proportion among the HIV-infected population would

18 The Challenge of HIV/AIDS in Communities of Color
warrant. This is particularly true regarding African Americans. As of August 1992, the
ACTG has enrolled 20,070 individuals in clinical trials. Of this total, 68.6 percent were
white, 15.7 percent were African American, and 14.3 percent were Hispanic/Latino.
Whites, African Americans, and Hispanics/Latinos account for, respectively, 53
percent, 29 percent, and 16 percent of all adult and adolescent AIDS cases (NIH,
1992).

It is also apparent that landmark studies on the treatment of HIV disease have
failed adequately to enroll patients of color. In a special communication that appeared
in the Jowmal of the American Medical Association, researchers from Harlem Hospital
and Columbia University College of Physicians analyzed the racial composition of
participants in a number of studies that dramatically influenced the treatment of HIV
disease and found that the number of minority patients was disproportionately small
(El-Sadr and Capps, 1992).

As a result of the underrepresentation of people of color in HIV-related
clinical trials, members of racial and ethnic minorities have not had equal access to the
investigational treatments available through trials. While the Commission recognizes
that a relative lack of access to health care seriously hampers efforts to recruit people
of color into clinical trials, this does not mean it is impossible to do so. Current efforts
at the National Institutes of Health (NIH) to expand the recruitment of
underrepresented populations in the ACTG have enjoyed initial success and should be
continued and increased. ACTG accrual of people of color has improved over the last
five years: African American and Hispanic/Latino representation in ACTG trials
increased by 8.7 percent and 3.3 percent, respectively, between 1987 and 1992. (See
Table 1.)

TABLE 1: Patient Accrual to ACTG Trials as of August 1992.

 

 

 

Population Percent of Percent of Percent in Percent in
Group Total Population AIDS Cases Clinical Trials Clinical Trials
1987 August 1992
Sex ,
Male 48.7° 88.6 95 87.0
Female 51.3 11.4 5 13.0
Race
White 80.9 52.8 | 82 68.6
African American 11.7 29.5 7 15.7
Hispanic/Latino 7.4 16.5 11 14.3
Other . . <1 1.4
Injection Drug Use : 28.6
Never 88 88.1
Previous/Current 12 11.9
Number of People in Trials 2,503 20,070

SOURCE: National Institutes of Health

Over the last three years people of color have been offered greater access to
clinical trials through the Terry Beirn Community Programs for Clinical Research on
AIDS (CPCRA) of NIAID. Established in October of 1989, the CPCRA involves 17
community-based research programs at about 160 sites in 13 U'S. cities. The program

The Challenge of HIV/AIDS in Communities of Color 19
includes groups of primary care physicians and nurses who care for large numbers of
people with HIV infection at community health centers and hospitals, private clinics
and practices, and drug treatment facilities. The CPCRA enables community-based
physicians to be involved in setting research priorities and conducting clinical trials,
thereby enhancing the participation of underrepresented populations. The CPCRA has
played a significant role in ensuring that research opportunities are available to people
of color living with HIV. Of the 5,334 patients entered into CPCRA trials as of August
1992, more than 57.1 percent are people of color. (See Table 2.)

TABLE 2: Patient Accrual to CPCRA Studies as of August 1992.

 

 

Population Percent of Percent of Percent in
Group Total Population AIDS Cases Clinical Trials
August 1992
Sex
Male . 48.7 88.6 80.6
Female 51.3 11.4 19.4
Race
White 80.9 52.8 42.9
African American 11.7 29.5 39.5
~ Hispanic/Latino 7.4 16.5 16.0
Asian American/Pacific Islander <1 0.4
Native American <1 0.3
Other <1 0.7
Injection Drug Use 28.6 “40

 

Number of People in Trials 5,334

SOURCE: National Institutes of Health ©

Efforts by NIH to ensure that its HIV-related research programs more
appropriately reflect the demographics of the HIV epidemic are also apparent in some
of its recently implemented programs. For example, as of August 1992, 30.9 percent
of all individuals (albeit only a total of 49 to date) enrolled in the NIAID-sponsored
Division of AIDS Treatment Research Initiative (DATRI) program were people of
color. The DATRI program provides rapid evaluation of potential therapeutic agents
and regimens against manifestations of HIV disease (NIH, 1992). (See Table 3.)

Nevertheless, HIV-infected people of color continue to encounter considerable
obstacles to participation in trials. Overall, the single most important factor is poor
access to quality health care. Without a primary care provider knowledgeable about
HIV disease, access to clinical trial opportunities is severely limited. For patients who
have no previous involvement with or understanding of clinical trials and who are not
well connected in the AIDS establishment, it is both difficult and frustrating to acquire
and digest information about clinical trial opportunities.

In addition, the strict entry criteria traditionally associated with controlled
clinical research have excluded many who wish to participate in HIV-related trials,
particularly drug users and women of childbearing age. Persons with HIV who are
subject to these exclusions are disproportionately people of color. This correlation can,
in part, account for the racial imbalance of the ACTG accrual. By inference we can
assume that efforts to improve access for persons who have been excluded owing to

20 The Challenge of HIV/AIDS in Communities of Color
TABLE 3: Patient Accrual to DATRI Studies as of August 1992.

 

 

 

Population _ Percent of Percent of Percent in
Group Total Population AIDS Cases Clinical Trials
August 1992
Sex
Male 48.7 88.6 87.8
Female §1.3 11.4 12.2
Race
White 80.9 §2.8 67.4
African American ~~ 11.7 29.5 26.5
Hispanic/Latino 7.4 16.5 4.1
Asian American/Pacific Islander <1 - 20
Native American <i
Other <1
Number of People in Trials 49

SOURCE: National Institutes of Health

these entry criteria would also improve access for people of color. Efforts have been
initiated to address these concerns. For example, through collaboration with the
National Institute on Drug Abuse (NIDA), the NIAID-sponsored ACTG has received
supplementary funding of $2 million in FY 1991 to expand the inclusion of injection
drug users in its trials. The ACTG and the CPCRA have also both established women’s
health committees to initiate new protocols to study specific manifestations of HIV
infection in women, improve accrual of women, develop guidelines for uniform
enrollment criteria for women, and make recommendations for further analysis of
existing data on issues related to women.

In addition, both the ACTG and the CPCRA have required their sites to
develop community advisory boards to ensure participation of underrepresented
populations and to increase awareness of specific community requirements for
participation in protocols. NIH has also instituted biannual institutional performance
assessments of NIAID-sponsored ACTG and CPCRA sites to assure participation of
underrepresented populations. The Commission believes these efforts should be
commended and should be continued and expanded, since greater participation by
traditionally excluded groups will not only provide increased access to experimental
therapies for many people with HIV disease but will also contribute to a more realistic
understanding of how certain experimental drugs will actually work outside a
scientifically controlled environment, in all populations that might receive them.

Long-term success in incorporation of persons of color into research programs,
however, can only be achieved if the concerns of people of color are addressed. Many
complain that the relationship between the community and the researchers ends
abruptly after data are collected, and that the community fails to reap the benefits of
the research. Information does not flow back into the community to assist in setting
priorities, developing programs, or providing technical assistance. Additionally, research
on these populations has been undertaken without cultural considerations in the design
and implementation of the research (Marin, Marin, and Juérez, 1990). It is time to
overhaul these practices and provide real assistance by fostering community and/or
culturally sensitive investigators, by developing culturally relevant research, and by
translating research findings into community programs.

The Challenge of HIV/AIDS in Communities of Color 21
Many people of color, especially African Americans, have concerns about
exploitation that has taken place in the research context in the past. The Commission
heard powerful testimony about the shadow of the Tuskeegee syphilis study and the
significant impact the memory of this disturbing incident has had on views of many
African Americans regarding clinical research. Much must be done about the antipathy
and distrust for research felt by many African Americans. Increasing the number of
racial and ethnic minority health professionals would be an important step toward
addressing this concern. Every effort must be made to identify, nurture, and support
researchers indigenous to the communities they serve.

Attention must be focused on ethical issues surrounding research as well. The
HIV epidemic has substantially changed the dynamics of power in the research
environment and raised new issues regarding access to limited treatment opportunities.
People of color have had to make a difficult transition—from thinking about research
as something from which they should be protected to something from which they may
benefit. The cognitive and behavioral dissonance created by the need for such a
transition must be recognized. Focused attention should be paid to the complexities of
developing a new ethos around research in communities of color and raising the
awareness of researchers and others to these issues.

~ The Commission recommends that:

e The National Institutes of Health, in conjunction with other appropriate
agencies within the Department of Health and Human Services, should
intensify efforts to assure access to HIV/AIDS clinical trial information, with
regard to trial opportunities, the results of research efforts, and their
significance for clinical management. Emphasis should be placed on reaching
populations that have had poor or underrepresentative access to clinical trial
opportunities. Efforts should include the collection and dissemination of
trial-related research and information on new developments in treatment.
' Dissemination should be carried out in a manner that ensures that
information is current, accurate, and comprehensible to target populations
and the health professionals who serve them.

22 The Challenge of HIV/AIDS in Communities of Color
The Challenge for Policymakers and
Program Implementers

The Commission believes that effective intervention requires that officials
understand that communities themselves are a significant unit for public health
purposes. A culture is a whole way of life grounded in a particular past experience and
environmental context. In important ways, it differs from any other culture in content
and form. One challenge to policymakers is to comprehend and respond to the
distinctiveness of varying cultural experiences, including each community’s fundamental
assumptions and beliefs, ethical and aesthetic values, ritual and material preferences,
and historical burdens. .

It is important then to recognize that each community has distinctive features,
that no two communities will be alike in their response to HIV disease, and that as a
consequence the process whereby a response to the HIV epidemic is mobilized in
communities will vary. Understanding more about how to respond to HIV/AIDS
involves understanding and respecting what each community regards as problems and
priorities, acknowledging its social organization and structure, studying the historical
context in which it interprets disease, and then identifying the community’s available
resources and the solutions it will be ready to employ. Information gathering of this
sort must be supported, funded, documented, and evaluated to broaden the reach of
HIV efforts.

The Commission believes that our best efforts in communities of color will be
those developed by and for the people the policies are intended to influence and
protect, through community-based projects at the local level. Accordingly, it is essential
to include people of color in HIV policy development. In addition, HIV risk-reduction
programs must be built on solid assessments of community perceptions and needs and
must include ongoing involvement of community members in planning and evaluation
efforts. For many communities, having people in the decision-making process who are
directly affected by the policies developed will help ensure that issues of particular
concern are addressed and will help overcome the distrust that pervades many
communities of color. At local and national levels, this role is by no means limited to
professionals, but must include community activists from a variety of backgrounds.
When people of color, particularly gay men, teenagers, women, illicit substance users,
and people who are HIV infected, are not consulted in the design and implementation
of HIV policies and programs, efforts directed toward these audiences will not be
effective.

. Policymakers also must recognize that distrust on the part of the community
is a legitimate barrier rooted in histories of discrimination, insufficient regard for the
health of people of color, and inappropriate scientific experimentation. If it fails to
recognize and pay attention to this widespread distrust, the public health community
may further alienate members of the community and may miss opportunities to alter
belief patterns (Thomas, 1992). Many public health officials will object that they are

The Challenge of HIV/AIDS in Communities of Color 23
hearing the same old complaints from communities of color. The response to such
objections is that these "old” concerns still exist in these communities as they have yet
to be addressed. The failure of policymakers and public health professionals to
comprehensively address community concerns contributes to the maintenance of
barriers between the community and health care providers.

Policymakers and public health professionals must be willing to listen to
community views and fears and, where appropriate, should acknowledge the limitations
of their public health initiatives. Adopting such an approach may help public health
authorities gain the credibility and the trust of communities of color. Such trust is
needed to successfully implement HIV risk-reduction strategies and improve access to
care in underserved communities (Thomas, 1992).

Conclusion and Recommendations

Prospects for preventing and treating HIV disease in communities of color give
cause for grave national concern, notwithstanding current efforts by many committed
individuals inside and outside of government. The complex link between race,
socioeconomic status, and poor health has assured a difficult road ahead in our efforts
to effectively confront the HIV epidemic in communities of color. The National
Commission on AIDS puts forward the following recommendations as a step toward
focusing greater attention on the needs of these communities and facilitating the
increased availability of critical resources.

Race and Socioeconomics

e Federal, state, and local governments should squarely confront problems
associated with racial inequality and its effect on the public health. Public
health officials should ensure that effective and equitable HIV policy,
programs, and funding efforts are brought to bear in communities of color.

e Public health officials should work with researchers, health professionals,
and community-based service providers to gain a better understanding of the
role of cultural and socioeconomic factors in the transmission of HIV, the
disease process, and access to care. Information gleaned from these efforts
should be taken into account in designing HIV prevention messages, services,
and programs, and in providing expanded treatment opportunities.

Prevention

e The Centers for Disease Control and Prevention should review the adequacy
of demographic information regarding HIV/AIDS currently available by race,
ethnicity, and nationality, particularly with regard to Asian
Americans/Pacific Islanders and Native Americans. Additionally, the
National Center for Health Statistics should make information available
regarding HIV/AIDS knowledge, attitudes, beliefs, and behaviors among
Asian Americans/Pacific Islanders and Native Americans. _

24 The Challenge of HIV/AIDS in Communities of Color

 
 

The Centers for Disease Control and Prevention should ensure that the
prevention and education needs of persons of color who engage in high-risk
behaviors are appropriately addressed by current and future prevention
initiatives and funding efforts. Programs specifically targeted toward men of
color who have sex with other men, toward injection drug users, and toward
women are needed.

Federal, state, and local governments should join forces with the private
sector in providing long-term support to community-based organizations
serving communities of color. As part of this effort, the U.S. Public Health
Service should expand and promote comprehensive and integrated programs
for technical assistance to and capacity building in these communities.

Health Care

The Commission believes there is an urgent need to improve the availability

of primary care services in communities of color. To accomplish this a multifaceted
approach is needed, including but not limited to the following efforts.

The President and the Congress should increase support for community-
based primary care, including community health centers, migrant health
centers, and clinics funded by. the Indian Health Service to ensure delivery
of prevention and care services, including those for HIV/AIDS.

The President and the Congress should fully fund the Ryan White CARE Act
and ensure that communities of color are adequately represented in the
planning process and appropriately served by the resources available.

The President and the Congress should provide additional incentives for
health care professionals to work in underserved areas by increasing support
for programs such as the National Health Service Corps and programs such
as the Disadvantaged Minority Health Improvement Act of 1990 targeted
specifically at increasing the number of minority health care professionals.

Likewise, state and local jurisdictions should increase support for public
hospitals and other locally supported components of comprehensive primary
care systems that deliver HIV prevention and care services.

Additionally, the Health Resources and Services Administration should
assess the capacity of special initiatives, such as the Ryan White CARE Act
and the Health Care for the Homeless Program, to develop and support a
strong primary care infrastructure in communities of color.

The federal government should provide adequate resources to community
programs designed to improve access to health care and support services
and to prevent the spread of HIV among adolescents. Passage of legislation

_ similar to the proposed Comprehensive Services for Youth Act of 1992 would

foster coordination and collaboration among educators, health care

The Challenge of HIV/AIDS in Communities of Color 25
providers, and community-based organizations through the development and
operation of citywide and statewide youth service center systems.

e The Agency for Health Care Policy and Research, the Health Resources and
Services Administration, and the National Institute of Allergy and Infectious
Diseases should conduct a review of current efforts to educate physicians on
developments in HIV/AIDS care and aggressively pursue methods to improve
the quality of HIV/AIDS care. In order to assure that people of color living
with HIV receive the benefit of current developments in HIV/AIDS care these
agencies should strive to coordinate better the dissemination of information,
target physicians who practice in communities of color, and work intensively
with schools and professional associations that have traditionally trained
minority health professionals.

Clinical Trials

e The National Institutes of Health, in conjunction with other appropriate
agencies within the Department of Health and Human Services, should
intensify efforts to assure access to HIV/AIDS clinical trial information, with
regard to trial opportunities, the results of research efforts, and their
significance for clinical management. Emphasis should be placed on reaching
populations that have had poor or underrepresentative access to clinical trial
opportunities. Efforts should include the collection and dissemination of
trial-related research and information on new developments in treatment.
Dissemination should be carried out in a manner that ensures that
information is current, accurate, and comprehensible to target populations
and the health professionals who serve them.

Social Services

e The federal government should work with the states to establish and support
foster care programs for children with HIV infection and noninfected youth
orphaned by the loss of parents to HIV/AIDS. Federal and state government
should also support programs designed to assist family members in caring
for children whose lives have been affected by HIV/AIDS.

In addition to the recommendations offered above, many of the
recommendations set forth in previous reports and statements issued by the
Commission are relevant to efforts to address the HIV/AIDS epidemic in communities
of color. In particular, the Commission directs attention to the following reports and
statements: America Living with AIDS, HIV Disease in Correctional Facilities, The Twin
Epidemics of Substance Use and HIV, The HIV/AIDS Epidemic in Puerto Rico,
Housing and the HIV/AIDS Epidemic, and Resolution on U.S. Visa and Immigration
Policy. :

26 The Challenge of HIV/AIDS in Communities of Color
Part Il

Community Profiles

The African American Community

Community Description

The African American community is the largest community of color in the
United States, constituting 12 percent of the U.S. population and consisting of many
different groups with different cultural backgrounds, religious beliefs and affiliations,
and political views. It contains not only those whose ancestors were brought here as
slaves as early as the 17th century, but also recent immigrants who come from areas
as diverse as the Caribbean islands, Europe, and Africa. African Americans live in all
parts of the country and are found i in every socioeconomic stratum. As many as half
of all African Americans live in inner cities, in areas with pervasive poverty, poor
schools, and inadequate social services, housing, and job opportunities; a third of
African Americans live below the poverty line.

Epidemiology

Of the four communities of color, the African American community is by far
the most disproportionately represented with respect to HIV/AIDS. As of October
1992, the Centers for Disease Control reported 71,984 cases of AIDS so far among
African Americans in the United States (CDC, 1992e). (See Table 4.) This represents
nearly 30 percent of all documented AIDS cases. By 1990, AIDS had become the
leading cause of death nationwide for African American men between the ages of 35
and 44 and the second leading cause of death for African American men and women
between the ages of 25 and 36. It is estimated that in 1992 one African American
person per hour will die of AIDS in the United States.

Of the 71,984 total AIDS cases among African Americans, 56,081 (78%) have
been in adult men (13 years of age or older) and 13,711 cases (19%) in adult women
(13 years of age or older); the remaining 2,192 cases (3%) are classified as pediatric
(in children younger than 13 years of age). (See Table 4.) For African American men,
who account for 26 percent of AIDS cases in all adult men in the nation, homosexual
contact accounts for 43 percent of the cases and injection drug use accounts for 36
percent. Men who have sex with men and also inject drugs account for another 7
percent of the cases.

The Challenge of HIV/AIDS in Communities of Color 27
TABLE 4: Adult/adolescent AIDS Cases by Sex, Exposure Category, and Race/ethnicity, Reported
through September 1992, United States.

 

African American Total?
Number Percent Number Percent

 

ADULT/ADOLESCENT
MALE
Exposure category
Men who have sex with men 24,287 (43) - 136,912 (65)
Injection drug use 20,000 (36) 41,631 (20)
Men who have sex with men and inject drugs 4,198 (7) 15,203 (7)
Hemophilia/coagulation disorder 152 (0) 1,910 (1)
Heterosexual contact: 4,138 (7) 5,983 (3)
Sex with injection drug user 1,438 2,448
Sex with person with hemophilia 3 12
Bom in Pattem Il" country 1,975 2,003
Sex with person bom in Patter II country 52 105
Sex with transfusion recipient with HIV Infection 24 94
Sex with HIV-infected person, risk not specified 646 1,321
Receipt gf blood transfusion, blood components, or 476 (1) 2,956 (1)
tissue
Other/undetermined® | 2,830 (5) 7,553 (4)
Subtotal 56,081 (100) 212,148 (100)
FEMALE
Exposure category
Injection drug use 7,410 = (54) 12,844 (50)
Hemophilla/coagulation disorder 8 (0) 43 (0)
Heterosexual contact: 4,870 (36) 9,238 (36)
Sex with Injection drug user 2,837 5,612
Sex with bisexual male 268 789
Sex with person with hemophilia 12 ~ 410
Bom in Pattem II country 830 841
Sex with person bom in Pattern II country 75 90
Sex with transfusion recipient with HIV infection 33 196
Sex with HIV-infected person, risk not specified 815 1,600
Receipt of blood transfusion, blood components, or 400 (3) 1,877 (7)
tissue .
Other/undetermined 1,023 (7) 1,945 (7)
Subtotal . 13,711 (100) 25,947 (100)

 

TsHeterosexual contact® cases Include persons who report either specific heterosexual contact with a person with,
or at increased risk for, HIV infection (e.g., an injection drug user), or persons presumed to have acquired HIV
infection through heterosexual contact because they were born in countries with a distinctive pattern of transmission
termed “Pattern Il" by the World Health Organization (MMWR 1988;37:286-8,293-5). Pattern tl transmission is
observed in areas of sub-Saharan Africa and in some Caribbean countries. In these countries, most of the reported
cases occur In heterosexuals and the male-to-female ratio is approximately 1:1. Injection drug use and homosexual
transmission either do not occur or occur at a fow level.

2Nineteen adults/adolescents and two children developed AIDS after receiving blood screened negative for HIV
antibody. Five additional adults developed AIDS after receiving tissue or organs from HiV-infected donors. Two of
the five received tissue or organs from a donor who was negative for HIV antibody at the time of donation.

Ssother® refers to seven health care workers who developed AIDS after occupational exposure to HIV-infected
blood, as documented by evidence of seroconversion; and to two patients who developed AIDS after exposure to HIV
within the health care setting, as documented by laboratory studies. ‘Undetermined: refers to patients whose

mode of exposure to HIV is unknown. This includes patients under investigation; patients who died, were lost to
follow-up, or refused an Interview; and patients whose mode of exposure to HIV remains undetermined after
investigation.

‘includes 551 persons whose race/ethnicity is unknown.
SOURCE: Adapted from CDC HIV/AIDS Surveillance, October 1992.

28 The Challenge of HIV/AIDS in Communities of Color
TABLE 4 continued: Pediatric AIDS Cases by Sex, Exposure Category, and Race/ethnicity,
Reported through September 1992, United States.

 

African American Total?
Number Percent Number Percent

 

PEDIATRIC
Exposure category
Hemophilia/coagulation disorder a 25 (1) 183 ( 5)
Mother with/at risk for HIV infection via: 2,050 (94) 3,480 ~ (86)
Injection drug use 967 1,634
Sex with injection drug user 320 704
Sex with bisexual male 27 . 7
Sex with person with hemophilia 5. 18
Born in Patter Il" country 266 271
Sex with person bom in Pattem Il country © 15 17
Sex with transfusion recipient with HIV infection 5 17
Sex with HIV-infected person, risk not specified 87 176
Receipt of blood transfusion, blood components, or 33 75
tissue . :
Has HIV infection, risk not specified 325 , 491
Receipt of blood transfusion, blood components, or 67 = (3) 303 (7)
tissue
Other/undetermined® 50 = (2) 85 (2)
Subtotal 2,192 (100) 4,051 (100)

 

NOTE: See technical notes and source from Table 4.

Among African American women, who account for 53 percent of AIDS cases
in all adult women in the nation, injection drug use is by far the most common mode
of transmission, accounting for 54 percent of cases. Heterosexual contact with an
injection drug user accounts for another 21 percent. Six percent of the cases in African
American women have been due to heterosexual contact with an HIV-infected person
who is not an injection drug user. |

African American children have accounted for 54 percent of all the reported
pediatric AIDS cases in children of all races in the nation (CDC, 1992e). Of the 2,192
pediatric AIDS cases among African American children, 94 percent have been due to
perinatal transmission from mothers infected with HIV. Only 4 percent have been due
to hemophilia-related blood products or the receipt of an HIV-contaminated blood
transfusion. The mode of transmission of the remaining 2 percent cannot be
determined. |
Although numbers of cases of CDC-defined AIDS are useful in assessing
HIV’s impact on a community, measurements of the prevalence and incidence of
antibody to HIV are helpful predictors of the direction the epidemic will take in the
future. Certain studies of HIV antibody prevalence have reported valuable data on the
African American community. The results of HIV screening of all active-duty U.S.
Army soldiers in 1985 through 1989 showed a seroprevalence among African
Americans of 0.51 percent, or 5.1 per 1,000 soldiers (Kelley et al., 1990). Applicants for
USS. military service were screened in a second survey, which found a seroprevalence
among African American teenage applicants of 1.0 per 1,000 (0.1%), compared with
0.17 per 1,000 for whites and 0.29 for Hispanics/Latinos (Burke et al., 1990). Another

The Challenge of HIV/AIDS in Communities of Color 29
study looked at applicants for the Job Corps, who tend to be from lower socioeconomic
backgrounds. Among African American applicants, the seroprevalence rate was 0.53
percent, or 5.3 per 1,000 (St. Louis et al., 1991).

Besides seroprevalence, seroconversion (to HIV-antibody positive) is also a
useful predictor of the impact HIV/AIDS will have on a community. One military
survey found a seroconversion rate among African American active-duty soldiers in the
USS. Army of 0.73 per 1,000 person-years during the last two years of the study, 1988
to 1989 (McNeil et al., 1991).

Knowledge, Attitudes, Beliefs, and Behaviors

Questions about AIDS have been included in the National Health Interview
Survey (NHIS) since 1987. The National Center for Health Statistics (NCHS)
conducted a study on knowledge and attitudes about HIV and AIDS in different racial
and ethnic minorities, using the data gathered in the 1990 NHIS. The single most
important finding was that the highest levels of knowledge among African Americans
were found in the younger groups and in those with the most education (Hardy and
Biddlecom, 1991).

The study found that 88 percent of African Americans surveyed had received
some form of information concerning HIV or AIDS in the previous month. Television
was the most popular source of information (77%), followed by newspapers (45%), and
magazines (40%). Radio was a source of information for 30 percent of the
respondents. Men were much more likely than women to list radio as a source of
information (34% and 27%, respectively). Overall, those with higher levels of education
tended to use print media as a source of information more often than electronic media.

Among those surveyed with children 10 to 17 years old, 79 percent of women
reported discussing HIV and AIDS with their children, compared with only 56 percent
of the men. A similar gender difference was found among white parents of children 10
to 17, with 80 percent of women and 58 percent of men reporting discussion on
HIV/AIDS with their children. Seventy-five percent of African American parents stated
that their children 10 to 17 years old had received AIDS education in school.
Approximately the same proportion of white adults, 74 percent, also said that their
children received AIDS education in school.

In the area of general AIDS knowledge, a majority of the African Americans
surveyed knew the major modes of transmission of HIV (unprotected sex, injection
drug use, and perinatal transmission). However, misconceptions still existed about other
possible modes of transmission. For example, only 42 percent of those surveyed who
had more than 12 years of education correctly indicated that it is highly unlikely for a
person to acquire HIV via mosquito bites and only 47 percent correctly indicated that
transmission is unlikely to occur from .being coughed or sneezed on. Such
misconception regarding HIV transmission is troubling because it can lead to
unwarranted fear and discrimination.

Only 68 percent of African Americans surveyed knew about the availability of
an HIV-antibody test; only 14 percent reported that they had been tested. Of that 14
percent, 51 percent did so voluntarily while the other 44 percent reported being tested
mandatorily. Fifty-two percent of those tested reported receiving pretest counseling,
and 43 percent reported receiving posttest counseling. When asked if they were aware
of the availability of medications that could prolong the life of a person with HIV

30 The Challenge of HIV/AIDS in Communities of Color
disease or AIDS, 52 percent of the respondents with more than 12 years of education
answered affirmatively. Only 31 percent of those with less than 12 years of education
answered affirmatively to this question.

Finally, in response to questions on the perceived efficacy of condom use, 28
percent answered that they thought that condoms were "very effective" in preventing
HIV transmission. Another 44 percent believed that condoms were "somewhat
effective" (Hardy and Biddlecom, 1991).

A different NCHS study looked at the knowledge and attitudes about HIV
among women. The study surveyed a total of 8,450 women (641 Hispanic/Latina, 2,771
African American, and 5,354 white). Overall, the study showed that the majority of
women surveyed, 85 percent, had correct information. Small differences were found
among race, income, and marital status groups, with all groups showing levels of
misinformation at or below 8 percent. For most items discussed in the report, low-
income women and African American women were more likely to have misinformation
on HIV transmission and more likely to say they had a greater chance of contracting
the disease. However, both these groups were likely to report making changes in their
sexual behavior since hearing of AIDS (McNally and Mosher, 1991).

Several studies have been conducted to define African American adolescents’
level of knowledge about HIV and practices related to injection drug use. One such
study (Holtzman et al., 1991) looked at injection drug use among adolescents and the
effects of education on this behavior. A small percentage (1.3%) of African American
male adolescents reported having used injection drugs in the previous year. The
researchers also found a high correlation between lack of HIV education and the use
of injection drugs. Finally, the study showed that, of the adolescents who had been
given adequate HIV education, African American males were less likely than any other
racial or ethnic group to inject drugs or share needles.

Other studies have looked at sexual behavior and practices in subpopulations
of the African American community. The Youth Risk Behavior Survey of high school
students (CDC, 1992b) found that 60 percent of the African American males and 20
percent of the African American females reported having had four or more sex
partners. Furthermore, the survey results showed that only 55 percent of the males and
37 percent of the females reported having used a condom during their most recent
intercourse. In a second survey of 16- to 19-year-olds, only 28 percent of African
American adolescents reported always using a condom (Hingson and Strunin, 1990).

The National Survey of Adolescent Males (1988) conducted by the Urban
Institute found that 69 percent of African Americans had had sexual intercourse by the
age of 15; this compares with an average of 33 percent of all participants in the study,
regardless of race. Moreover, the study found that 96 percent of 19-year-old African .
American males had had sexual intercourse, compared with 86 percent of all
participants of the same age (Sonenstein, Pleck, and Ku, 1989).

The National Survey of Family Growth conducted by the National Center for
Health Statistics looked at the same variables with regard to African American women
aged 15 to 44 and found that 17 percent of 15-year-olds, 50 percent of 17-year-olds, and
81 percent of 19-year-olds had had sexual intercourse. This compares with averages of
all the females surveyed (regardless of race) in these age groups of 10 percent of 15-
year-olds, 35 percent of 17-year-olds, and 63 percent of 19-year-olds (Miller, Turner,

_and Moses, 1990).

The Challenge of HIV/AIDS in Communities of Color 31
Health Status

The African American community has major health concerns besides HIV
disease that must be confronted if the community as a whole is to thrive. Many of
these concerns are directly related to the fact that African Americans as a group
receive lower levels of routine and preventive health services than other ethnic groups.
According to one report, 20 percent of African Americans do not have any usual
source of medical care, 22 percent have no private or public health insurance, and as
many as 20 percent of African American children are incompletely immunized against
the common vaccine-preventable diseases (Department of Health and Human Services,
1992).

This lack of regular health care permeates every aspect of the health of the
African American community. For example, African American men have a 25 percent
higher incidence of all cancers and a 45 percent higher risk of lung cancer than men
in general. Furthermore, only 38 percent of African Americans survive 5 years after
cancer is diagnosed, compared with 52 percent in the nation as a whole (Department
of Health and Human Services, 1992).

The average life expectancy in the African American community is far lower
than the national average. In 1989 African Americans in the United States had an
average life expectancy of 69.2 years, compared with 75.3 years for the population as
a whole. Between 1984 and 1989, the life expectancy of African Americans decreased
from a high of 69.7 years. The infant mortality rate of African Americans is much
higher than that of the overall population; African American infants are twice as likely
as White infants to die before their first birthday. Many of these deaths are due to
prematurity and low birth weight; however, other causes include sudden infant death

syndrome, respiratory distress syndrome, infections, and injuries. The maternal |

mortality rate in the African American community stands at 18.6 deaths per 100,000
live births; this is more than twice the national average of 7.3 deaths per 100,000 live
births (Department of Health and Human Services, 1992).

‘ African American teenage pregnancy rates have been dropping since the 1960s
(Department of Health and Human Services, 1992); nevertheless, because of the
increase in the number of teenage girls in the population, the actual number of African
American teenage pregnancies has increased and is several times larger than the
number of teenage pregnancies among white teenagers and other ethnic groups.

The incidence of death from stroke in the African American population is
twice the national average (Department of Health and Human Services, 1992). This is
probably related to the very high incidence of hypertension and diabetes, both of which
affect African Americans at disproportionate rates. In addition, the prevalence of
tobacco use in the African American community is high and in some areas is rising.
One particularly chilling statistic is that for African Americans 15 to 34 years old,
homicide is the leading cause of death (Hammett et al., 1992).

Sexually transmitted disease incidence in the African American community is
extremely high. African Americans accounted for 78 percent of all reported cases of
gonorrhea and 76 percent of all reported cases of primary and secondary syphilis in the
United States in 1988. The prevalence of antibody to the herpes simplex virus type 2
was also much higher in the African American community than in any other group.
The average prevalence was 41 percent and increased with age; African American
women aged 60 to 74 had the highest prevalence at 80 percent (Moran et al., 1989).

32 The Challenge of HIV/AIDS in Communities of Color
Programs

Since the mid-1980s, prevention activities have been increasingly targeted
toward African American communities. Funding by Public Health Service agencies such
as the Centers for Disease Control, the National Institute on Drug Abuse, and the
Office of Minority Health have contributed to the support of a variety of African
American community-based organizations working with AIDS, such as Blacks
Educating Blacks about Sexual Health Issues (BEBASHI) in Philadelphia and Support
Organization for AIDS Prevention (SOAP) in Los Angeles. In addition, funding has
been provided to national organizations serving African Americans in an effort to
increase the involvement of traditional leadership organizations in the fight against
HIV/AIDS. Organizations that have been supported under this program include the
National Medical Association, the National Urban League, and the Southern Christian
Leadership Conference. As awareness about the disproportionate impact of the
HIV/AIDS epidemic on African American communities has grown, funding from
private sources has also increased.

Despite support from both public and private funding sources, organizations
providing HIV/AIDS services in African American communities face considerable
hardship, as they often do not have access to adequate and sustained funding. For these
organizations, developing a sufficient infrastructure to provide ongoing and increasingly
comprehensive services and to compete successfully for scarce resources are significant
challenges. Thus, a large portion of resources has been devoted to technical assistance
and informational materials on the development and management of resources.

In addition, volunteering and activism related to HIV/AIDS in the African
American communities have increased in importance. While many African Americans
have devoted significant time and effort to AIDS activities, they often lack sufficient
support. To some degree, AIDS program efforts in African American communities and
in other communities of color have suffered because there has not been a united effort
within the community to pressure public health authorities and other governmental
agencies to provide resources and services. In part this has been due to bias against
gays and injection drug users and to the continuing need to focus attention on
longstanding political and social problems, including significant health concerns other
than AIDS.

Most importantly, HIV program efforts in the African American community
have suffered because governmental entities have failed to adequately comprehend the
sociological, attitudinal, behavioral, and gender complexities of the African American
community—all of which play a role in the course of the HIV/AIDS epidemic.

Attention to the cultural aspects of the HIV/AIDS epidemic in this community is
critically needed: /

Community Concerns

In December 1990, the Commission held a hearing in Baltimore on HIV
disease in African American communities. In addition, over the past two years the
Commission has heard from individuals, organizations, and service providers in a

variety of settings regarding the impact of HIV/AIDS on African American
communities. Among the concerns raised were:

The Challenge of HIV/AIDS in Communities of Color 33
Conspiracy theories. Many in the African American community contend that the virus
was man-made. A vocal contingent believes that HIV was the result of biological
warfare development by the U.S. Army or the CIA or some other agency. Some in this
contingent believe that the virus was deliberately introduced into African and African
American communities as part of a genocidal plan. Similarly, the drug epidemic in
African American communities is seen as part of a conspiracy to destroy the
community. People who believe these theories are inclined to distrust governmental
efforts to combat the HIV epidemic and to disbelieve government prevention and
treatment messages. .

Discrimination. There is great concern in African American communities about the
degree to which being HIV positive adds to the already substantial burdens of race,
gender, class, and sexual orientation. These burdens may include discrimination that
limits opportunities for employment, education, housing, and health care in ways that
might not apply to more affluent white gay men who have greater resources and
support systems. .

Disproportionate impact. Unquestionably, HIV/AIDS has hit the African American
community hard. Indeed, if one speaks about women and AIDS, one is speaking about
African American women. If one speaks about children and AIDS, one is speaking
about African American children. If one speaks about injection drug users and AIDS,
one is speaking about people in the African American community. Similarly, if one
speaks about gay men and AIDS, one is speaking about African American men, since
roughly half of African American men who are infected are men who have sex with
other men.

Drug users. African Americans who are infected by virtue of drug use or sexual contact
with drug users have an experience of the health care system marked by alienation.
They are often victims of the prejudice against substance users that permeates the
health care system. Health care providers tend to blame them for their problems and
treat them with something less than the dignity with which all would like to be treated
when ill. In addition, drug users face considerable obstacles in obtaining community
support. Many African American communities bear the brunt of the disastrous
consequences of the drug epidemic and governmental efforts to mount a war on drugs
(e.g., gang warfare, violence, crime, and addiction). In these communities there is some
ambivalence about using scarce resources to assist people who engage in drug use and
commerce and who on the whole are viewed as a threat to the community.

History of mistrust. Another tragic dimension of the HIV/AIDS epidemic is that in
striking the African American community the HIV epidemic affects a population
already alienated from the health care system and the government, a population that
is somewhat cynical about the motives of those who arrive in their communities to help
them. Alienation is, in part, a product of the historical relationship between African
Americans and whites in the United States. This relationship was born in the peculiar
institution of slavery. In 1990, we as a nation are still living out the legacy of that
history. Until and unless that reality is taken into account, a full understanding of how
to deal with AIDS insofar as it differentially affects African Americans will be
impossible.

34 The Challenge of HIV/AIDS in Communities of Color

 
 

Homophobia. As in mainstream culture, many individuals, families, and formal
leadership structures in the African American community (such as churches,
fraternities, professional organizations, and others) have difficulty dealing with issues
of sexual orientation. Thus, issues of concern to the African American gay, bisexual,
and lesbian community are often ignored, and African American gays, bisexuals, and
lesbians themselves have been rendered invisible. Testing HIV positive has added an
extra burden to many gay and bisexual men of color already struggling to maintain a
support base of family and friends. Indeed the stigma of homosexuality among African
Americans has led many to misrepresent their mode of exposure to HIV.

Immigration. US. immigration policy, which currently excludes persons who are HIV
seropositive from traveling to, immigrating to, or seeking refuge or asylum in the
United States, has had a disproportionately harsh impact on HIV-seropositive Haitian
asylum-seekers. Currently, more than 270 Haitians are confined by the US.
government to a detention camp on Guantanamo Naval Base, Cuba, despite having
been found by the Immigration and Naturalization Service to have a "credible" fear of
persecution if forcibly returned to Haiti.

Kermron. Individuals and organizations in the African American community have
expressed interest in a government-sponsored trial of the drug Kemron/Immuviron in
the United States. Kemron/Immuviron is an oral, alpha-interferon preparation that was
first tested as a treatment for AIDS at the Kenya Medical Research Institute in
Nairobi.

Leadership. Aithough organizations and leaders in the African American communities
are certainly more active in the fight against AIDS in general than they were a few
years ago, questions regarding the adequacy of leadership efforts continue to be raised.
As the devastation in these communities becomes more and more inescapable, there
is a growing resolve not to wait for leadership from the federal government.
Additionally, while many in the community believe that engaging traditional African
American leadership organizations such as the church is very important, it has become
increasingly clear that it may be a mistake to rely solely on traditional mechanisms for
the response needed to effectively confront the HIV epidemic. AIDS may never be as
high a priority for some of these organizations as one might like it to be. As the
epidemic has progressed, new organizations have grown up around AIDS in African
American communities and new leaders have emerged. It is important to nurture and
support these individuals and entities as work continues to involve traditional leadership
organizations more fully in HIV/AIDS efforts.

Needle exchange. It has been suggested that the controversy over needle exchange is
in a way a metaphor for the deep skepticism in the African American community about
the motivations of the AIDS establishment. There is a continuing uneasiness in many
quarters about the focus on AIDS in the African American community while many
other health problems seem to be receiving less and less public attention and funding.
In the face of remarkable inattention to and disregard for the health status of African
Americans in general, many people ask, "Are they interested in the spread of AIDS

The Challenge of HIV/AIDS in Communities of Color 35

 
because they are concerned about us or are they interested in us because they are
concerned about the spread of AIDS?" In addition, many people in the African
American community are convinced that needle exchange programs will only lead to
greater availability of needles, which in turn will result in an increase in injection drug
use.

Origins of HIV. The question of the origin of HIV has commanded a great deal of
attention in the African American community, since a body of scientific research
suggests that the virus first appeared in central Africa. Many people in the African
American community resent the speculation about the origin of HIV being in Africa,
because they fear that they are being blamed for the epidemic.

Orphans and abandoned children. Thousands of African American children are being
orphaned as their parents die from AIDS. This reality has spawned concern regarding
the future of these children, the burden placed on other family members (particularly
grandparents), and the ability of an already overloaded foster care system to effectively
care for them. Abandoned children who have been drug exposed and/or HIV infected
are a part of the boarder baby problem in many inner city hospitals.

Other health concems. In the African American community, as in other communities
of color, one must contend with the reality that there are many other health and social
problems that, although interacting with the HIV epidemic, preceded it. Thus, AIDS
is but one of many health concerns affecting African American communities. Currently,
African Americans suffer disproportionately from a number of health problems,
including high rates of infant mortality, heart disease, diabetes, certain cancers, and
homicide. Furthermore, HIV/AIDS is increasingly intertwined with problems of
poverty, poor education, drug dependence, homelessness, and inadequate health care.

Research. The African American community’s perspective on medical research has a
historical basis that sometimes outweighs the demonstrable integrity and commitment
of the individual investigators or institutions conducting AIDS or other biomedical
research. Countless witnesses spoke to the Commission about the history of the
Tuskeegee Syphilis Study as a foundation for African American fear of experimentation
and distrust of research initiatives.

Stigmatization. Many people fear that emphasizing the differential impact of
HIV/AIDS on African Americans serves only to reinforce stereotypes and to foster
discrimination. The community’s fear of stigmatization is in many ways informed by the
experience of the Haitian community, who early in the epidemic suffered severe
stigmatization after being designated a risk group for AIDS.

Women. African American women who are HIV infected have reported numerous
barriers to accessing health care services. Some women fail to seek care for themselves
because they are preoccupied by caring for their mates or children. Others face
discriminatory circumstances when they attempt to secure care because they are

injection drug users, are the sexual partners of injection drug users, or are of —

childbearing age. Many women, however, face moral scrutiny regarding their
reproductive choices when they seek health care services. A number of disturbing

36 The Challenge of HIV/AIDS in Communities of Color
reports have surfaced regarding the refusal of clinics that serve poor women of color
to perform abortions on women known to be HIV positive. Ironically, women have also
reported being forcibly or unknowingly sterilized because of their HIV status or drug
use.

The Challenge of HIV/AIDS in Communities of Color 37
The Hispanic/Latino Community

Community Description

The ethnic community recognized by the federal government as Hispanic is
extremely diverse; it includes people, both African American and white, whose roots
can be traced to Spanish-speaking countries in Central America, South America, the
Caribbean, and Spain. This diversity provides for a variety of traditions and regional
and demographic characteristics, some of which may be unique to a particular group;
nevertheless, the people in this ethnic group are linked by shared cultural values. The
largest group among Hispanics/Latinos in the United States are the Mexican
Americans (64%), followed by other Central and South Americans (14%), Puerto
Ricans (11%), and Cubans (5%). The states with the largest Hispanic/Latino
populations are California, Texas, and Florida, but large numbers of Hispanics/Latinos
also live in Arizona, New Mexico, Colorado, New York, New Jersey, and Illinois.
Puerto Rico, which is almost entirely Hispanic/Latino, has a population of 3.6 million.

According to the 1990 Census Profile, the Hispanic/Latino population in the
United States increased by 53 percent in the 1980s (from 14.6 million to 22.42 million),
with the highest growth rate concentrated in the West (62%). This growth can be
attributed to several factors, such as immigration and natural increase (births minus
deaths), and can be determined by fertility rates and the age of the population (Bureau
of the Census, 1991a).

' The median age of Hispanics/Latinos is 26 years, compared with 34 for non-
Hispanics. Half of the Hispanic/Latino population are younger than 18 years old, and
a third are younger than 15. The socioeconomic status of Hispanics/Latinos has
remained the same since 1980 (Giachello, 1991); 25 percent of Hispanic/Latino
families were living in poverty in 1990, compared with 9.5 percent of non-Hispanic
families (Bureau of the Census, 1991b). Given these conditions, HIV/AIDS is one of
many issues to be dealt with, together with unemployment, inadequate housing,
generally poor health, and others.

Epidemiology

According to CDC-reported data (CDC, 1992e), 17 percent of all reported
AIDS cases have occurred among members of the Hispanic/Latino community
although this ethnic group makes up only 9 percent of the total population of the
United States. Of AIDS cases among Hispanic/Latino adults and adolescents, 46
percent are reported as arising from exposure between men who have sex with men,
40 percent (for males and females) are from exposure via injection drug use, and 7
percent are from exposure due to heterosexual contact. (See Table 5.)

38 | The Challenge of HIV/AIDS in Communities of Color
TABLE 5: Adutt/adolescent AIDS Cases by Sex, Exposure Category, and Race/ethnicity, Reported
through September 1992, United States.

 

Hispanic/Latino
Number Percent

Totai4
Number Percent

 

ADULT/ADOLESCENT

1

MALE

Exposure category
Men who have sex with men
Injection drug use
Men who have sex with men and inject drugs
Hemophilia/coagulation disorder
Heterosexual contact:
Sex with Injection drug user
Sex with person with hemophilia
Bom tn Pattem Il country
Sex with person bom in Patter !I country
Sex with transfusion recipient with HIV infection
Sex with HIV-infected person, risk not specified
Receipt gf blood transfusion, blood components, or
tissue
Other/undetermined®
Subtotal

FEMALE

Exposure category
Injection drug use

Hemophilla/coagulation disorder
Heterosexual contact:
Sex with injection drug user
Sex with bisexual male
Sex with person with hemophilia
Bom in Pattem {I country —
Sex with person bom in Pattem II country
Sex with transfusion recipient with HIV infection
Sex with HIV-infected person, risk not specified
Receipt of blood transfusion, blood components, or
tissue
Other/undetermined
Subtotal

15,671
13,077
2,233
158
786

- 416

10

10

326
293

1,732
33,950

2,627

@

2,152
1,650
97

6

7

3

33
356
256

381
5,419

(46)
(39)
(7)
( 0)
(2)

(1)

(5)
(100)

(48)

( 0)
(40)

(5)

(7)
(100)

136,912
41,631
15,203

1,910
5,983
2,448
12
2,003
105

- 94
1,321
2,956

7,553
212,148

12,844
43
9,238
5,612
789
110
841
90
196
1,600
1,877

1,945
25,947

or at increased risk for, HIV infection (e.g., an injection drug user), or persons presumed to have acquired HIV
infection through heterosexual contact because they were born in countries with a distinctive pattern of transmission
termed “Pattern Il* by the World Health Organization (MMWR 1988;37:286-8,293-5). Pattern Ii transmission is
observed in areas of sub-Saharan Africa and in some Caribbean countries. In these countries, most of the reported
cases occur in heterosexuals and the male-to-female ratio is approximately 1:1. Injection drug use and homosexual
transmission either do not occur or occur at a low level.

2Nineteen adults/adolescents and two children developed AIDS after receiving blood screened negative for HIV

(85)
(20)
(7)
(1)
(3)

(1)

( 4)
(100)

(50)

( 0)
(38)

(7)

(7)
(100)

“Heterosexual contact" cases include persons who report either specific heterosexual contact with a person with,

antibody. Five additional adults developed AIDS after receiving tissue or organs from HIV-infected donors. Two of
the five received organs or tissue from a donor who was negative for HIV antibody at the time of donation.

3

“Other refers to seven health care workers who developed AIDS after occupational exposure to HIV-infected

blood, as documented by evidence of seroconversion; and to two patients who developed AIDS after exposure to HIV

within the health care setting, as documented by laboratory studies. ‘Undetermined? refers to patients whose
mode of exposure to HIV Is unknown. This includes patients under investigation; patients who dled, were tost to

follow-up, or refused an interview; and patients whose mode of exposure to HIV remains undetermined after
investigation.

‘inctudes 551 persons whose race/ethnicity Is unknown.

SOURCE: Adapted from COC HIV/AIDS Surveillance, October 1992.

The Challenge of HIV/AIDS in Communities of Color

39

 
TABLE 5 continued: Pediatric AIDS Cases by Sex, Exposure Category, and Race/ethnicity,
Reported through September 1992, United States.

 

Hispanic/Latino Totar4
Number Percent Number Percent

 

PEDIATRIC

Exposure category
Hemophilia/coagulation disorder 28 (3) 183 ( 5)
Mother with/at risk for HIV infection via: 868 (88) 3,480 (86)

Injection drug use 409 1,634

Sex with injection drug user 278 704

Sex with bisexual male 17 77

Sex with person with hemophilia 2 18

Bom In Patter Il" country 3 271

Sex with person bom In Pattern Il country 1 17

Sex with transfusion recipient with HIV infection 7 17

Sex with HIV-infected person, risk not specified 48 ' 476

Receipt of blood transfusion, blood components, or 19 75

tissue

Has HIV infection, risk not specified 86 : 4914
Receipt 3f blood transfusion, blood components, or 71s (7) 303 (7)

tissue
Other/undetermined® 17 (2) 85 (2)
Subtotal 984 (100) 4,051 (100)

 

NOTE: See technica! notes and source from Table 5.

Quantifying homosexual/bisexual AIDS cases is difficult because of the
cultural belief held by many in the Hispanic/Latino community that, of men who have
sex with other men, only the receptive partner in anal intercourse is homosexual,
whereas the insertive partner is not considered homosexual (Carrier and Magafia, 1991;
Magafia and Carrier, 1991). This belief may skew statistics dealing with
homosexual/bisexual infection rates since there are Hispanic/Latino men who fit these
categories but who do not identify themselves accordingly (Chu et al., 1992).
Heterosexual transmission is responsible for 7 percent of AIDS cases, and another 39
percent of the Hispanic/Latino men with AIDS have become infected through injection
drug use (CDC, 1992e).

The Hispanic/Latino community has been hard hit in other ways. As of the
end of September 1992, Hispanic/Latina women accounted for 21 percent of all
reported AIDS cases among women and 20 percent of cases among adolescents (ages

-13 to 19) and Hispanics/Latinos accounted for 24 percent of all pediatric cases (CDC,
1992e).

Pediatric cases are primarily due to perinatal transmission from a mother who
contracted the virus via unprotected sex with an injection drug user (32%) or through
her own use of injection drugs (47%). Maternal exposure via sex with bisexual men
accounts for another, albeit smaller, element of infection in children (2%) (CDC,
1992e).

National seroprevalence surveys conducted in a variety of clinical settings in
44 metropolitan areas provided disheartening information regarding the spread of HIV.
From 1988 to 1990, results reported from surveys conducted in sexually transmitted

40 The Challenge of HIV/AIDS in Communities of Color

f
disease (STD) clinics in 44 areas found a nationwide median HIV seroprevalence of
2.1 percent. The highest HIV-seropositivity rates among injection drug users tested in
the STD clinics were found in Florida, Puerto Rico, and the Mid-Atlantic states—areas
in which a large number of Hispanics/Latinos, particularly Puerto Ricans, reside. Of
all the STD clinics in the sample, the highest median rates of HIV positivity were
found in San Juan, Puerto Rico (13.6%); Miami, Florida (10.9%); and Newark, New
Jersey (7.8% )—all of which have large Hispanic/Latino populations (CDC, 1991Ic).

Surveys conducted among teenage applicants for military service showed HIV-
seropositivity rates of 0.29 percent among Hispanics/Latinos (Burke et al., 1990).
Additionally, screening of Job Corps applicants, traditionally of lower socioeconomic
backgrounds, found a prevalence rate among Hispanics of 0.26 percent (St. Louis et
al., 1991).

Blinded studies conducted from 1988 to 1990 in STD clinics, drug treatment
centers, and women’s health clinics in 20 selected metropolitan areas included
approximately 30,000 Hispanic/Latino clients. According to an analysis of the data, the
highest median seroprevalence rates in the drug treatment centers were found among
Puerto Ricans (19.1%) and the lowest among Mexican Americans (below 0.1 percent).

Cubans had the highest median seroprevalence rates in the STD clinics (15.2%),
compared with 8.9 percent for Puerto Ricans and below 0.1 percent for Mexican
Americans. The median seroprevalence rates for women’s clinics showed Puerto
Ricans, Mexican Americans, and Cubans below 0.1 percent. Overall, Hispanic/Latina

women had median seroprevalence rates of below 0.1 percent in women’s clinics, 2.5
percent in STD clinics, and 3.8 percent in drug treatment centers (Guerefia et al.,
1990).

Seroprevalence data collected in 1990 in public HIV-antibody testing and
counseling sites in 50 states, the District of Columbia, and the U.S. dependencies and

possessions showed a 3.7 percent HIV seropositivity rate for all races and a 6 percent
rate for Hispanics/Latinos (CDC, 1991d).

Knowledge, Attitudes, Beliefs, and Behaviors

The National Center for Health Statistics (NCHS) conducted a study on
knowledge and attitudes about HIV and AIDS in different racial and ethnic minorities,
using data gathered in the 1990 National Health Interview Survey (NHIS). Questions
about AIDS have been included in the NHIS since 1987; the survey also covers general
information and knowledge, modes of transmission, blood donation and the blood
supply, and HIV testing.

One of the most important findings about the Hispanic/Latino community
(Biddlecom and Hardy, 1991) concerned their levels of education and knowledge
regarding HIV. In every section of the survey, there was a definite correlation between
years of education completed and number of questions answered correctly. However,
it is also important to note that even those with higher education had many
misconceptions or lacked adequate information.

According to NHIS, 88 percent of Hispanic/Latino adults reported having
received some HIV- or AIDS-related information in the previous month. Of those
people, 77 percent received their information from television, 43 percent from
newspapers, and 37 percent from magazines.

The Challenge of HIV/AIDS in Communities of Color 41
Of the adults with children 10 to 17 years old, only 57 percent reported having
talked with their children about HIV or AIDS, compared with 70 percent of their white
counterparts. This number was lowest for the Mexican American parents (50%). Of
those parents who answered the questions about discussing AIDS with their children,
66 percent of the women said they had, compared with only 45 percent of the men.

On the general knowledge section of the survey, the proportion of
Hispanic/Latino adults who correctly identified the major modes of HIV transmission
was uniformly high; however, there were still many misconceptions about other
transmission risks. For example, under half of those surveyed with 12 or more years
of education correctly indicated that it is highly unlikely or definitely not possible for
a person to acquire HIV via mosquito bites. Many of those surveyed also thought there
was a possibility of becoming HIV-infected by being coughed or sneezed on. This level
of misinformation gives cause for concern.

Concerning HIV testing, 69 percent of Hispanics/Latinos knew that a test was
available and 16 percent reported having been tested, compared with 81 percent and
9 percent of whites. Moreover, many of these were tested mandatorily, not voluntarily,
because of immigration, employment, and hospitalization requirements. Of those who
had been tested, only 39 percent reported receiving pretest counseling and only 35
percent received posttest counseling.

The NHIS also asked Hispanic/Latino adults about their perceptions of the
efficacy of condoms. Seventy-one percent believed that condoms were "very" or
"somewhat effective” protection in preventing transmission of HIV. Puerto Ricans were
more likely than other Hispanic/Latino groups to say that condoms were "very
effective" (32%, compared with 22%). When asked if they knew about medications that
could extend the life of a person infected with HIV, 25 percent, 42 percent, and 49
percent of respondents with less than 12 years of education, 12 years of education, and
more than 12 years of education, respectively, indicated that they were aware of the
existence of such medications.

_ A study conducted from January 1989 through June 1990 by the Northeast
Hispanic AIDS Consortium, concerning knowledge, attitudes, beliefs, and behaviors
about HIV/AIDS among Hispanic/Latino residents of Connecticut, Massachusetts,
New York, New Jersey, Pennsylvania, and Puerto Rico (sample of 2,541), reflected that
knowledge gaps still exist. While a majority of Hispanics/Latinos were familiar with
risks of transmission through needle sharing and unprotected sex, significant
percentages of participants were unaware of the risk involved in having unprotected sex
with a person with a history of injection drug use (8%-25%), thought HIV-infected
persons could be identified visually (20%-34%), thought there was a vaccine available
for AIDS (21%-57%), and were unaware of the availability of the HIV antibody test
(10%-20%). Most study participants reported engaging in one or more risk behaviors
in the previous year (Amaro and Gornemann, 1992).

Women of childbearing age demonstrated more knowledge about prevention, |

but felt less able to reduce the risks of infection because of a perceived lack of equal
power in their relationships. Twenty-seven percent of the sample of self-identified gay
men surveyed reported having had unprotected sex with a woman in the previous year.
Bisexuality is an important factor in the spread of HIV in the Hispanic/Latino
community (Amaro and Gornemann, 1992).

42 The Challenge of HIV/AIDS in Communities of Color

é

 
 

Health Status

Complete national vital statistics for Hispanics/Latinos are currently
unavailable as many localities do not separately collect or tabulate data on
Hispanics/Latinos. The information that is available indicates that on many points they
do not differ greatly in their health status from the rest of the nation; however, there
are areas where the community lags behind. Indeed, a diversity of health issues face
the Hispanic/Latino community today.

Infant mortality varies greatly among the different subgroups of
Hispanics/Latinos, but overall the community has a higher infant mortality rate than
the national average. Puerto Ricans as a group have the highest rate, 9.6 infant deaths
per 1,000 live births, in contrast to the Cuban rate of 7.4 deaths per 1,000 live births
(NCHS, 1992). This may in part be explained by the higher utilization rates of prenatal
care in the Cuban community. Overall, Hispanics/Latinas have a lower rate of prenatal
care, with 13 percent of pregnant women receiving care late or not at all.

The major causes of death are the same in the Hispanic/Latino community
as in the rest of the nation—i.e., heart disease and cancer. AIDS is in many geographic
areas among the leading causes of death for Hispanics/Latinos. Substance use is a |
major concern in the Hispanic/Latino community; teenagers report very high rates of
alcohol consumption, and cocaine use is also reported to be very high, especially among
Cuban Americans 12 to 17 years old. The number of cocaine-related deaths of
Hispanics/Latinos tripled between 1982 and 1984 (NIDA, 1982; NIDA, 1984).

STD incidence in the Hispanic/Latino community is higher than in the
population at large. Hispanics/Latinos accounted for 12 percent of all reported cases
of primary and secondary syphilis in the United States in 1988. Although the
community accounted for only 5 percent of the reported gonorrhea cases, the incidence
rate per 100,000 population was four times that of the white population (Moran et al.,
1989).

_ Overall, some of the most serious concerns regarding Hispanic/Latino health
are cultural, geographic, and linguistic barriers to care, lack of available preventative
and primary care services, and alarmingly low levels of health insurance coverage.

Programs

The Hispanic/Latino community has put in place an array of programs to
respond to the HIV epidemic. Examples of the programs throughout the nation include
community-based efforts such as Proyecto Amor in San Juan, regional efforts such as
the Midwest Hispanic AIDS Coalition in Chicago, innovative communications programs
such as the productions at KCET (PBS) in Los Angeles, and national programs such
as the AIDS Center at National Council of La Raza in Washington, D.C.

Programs that seem to be successful in reaching Hispanics/Latinos share many
common elements. They are community based. They maintain a personal,
nonjudgmental relationship with clients and often adopt a family-centered approach.
They are accepted by the community and in many instances are tailored to the specific
needs of the participants and include messages that are clear, simple, and applicable
to a specific Hispanic subpopulation.

Funding by Public Health Service agencies such as the Centers for Disease
Control, the National Institute on Drug Abuse, and the Office of Minority Health have

The Challenge of HIV/AIDS in Communities of Color 43
contributed to the support of a variety of Hispanic/Latino community-based
organizations working with AIDS. The Hispanic/Latino community, however, is still
facing tremendous programmatic challenges in its response to the HIV epidemic.
Hispanic/Latino organizations have had difficulties in accessing the financial resources
needed to operate successful HIV/AIDS programs. Many Hispanic/Latino
organizations have been established only recently and are not part of the network of
information that benefit larger and more established organizations.

They lack experience in accessing current information about funding sources.
Other organizations, because of limited infrastructure, insufficient work force, and
limited management expertise also lack the capacity to successfully respond to requests
for proposals. Thus, even when organizations have received information about funding
opportunities, they may also need technical assistance in order to submit a competitive
proposal.

For organizations that have received financial assistance from private and
public sources, funding has often proven difficult to sustain. Issues regarding sustained
funding are various and complex. For example, programs are usually funded for a
period of 3 to 5 years, with the expectation that the grantee will have fulfilled the goals
of the project or attracted new funding sources at the end of the funding cycle. Many
organizations, however, have not been able to secure alternative funding sources or to
diversify their funding base. Many organizations do not have the strong evaluation
components in their programs that would enable them to document the success of their
initiatives. Even where experienced AIDS organizations have been able to document
the effectiveness of their programs, they have not been able to compete with larger and
more established organizations in the community, even though the latter may lack
experience providing HIV-related services. Many Hispanic/Latino organizations find
it difficult to provide services on a reimbursable basis to cover gaps in funding. As a
result, many organizations have not been able to provide services because federal, state,
or local funding has not come through on time or has been withheld owing to budget
deficits or appropriations delays. |

Although these issues are not unique to the Hispanic/Latino community, they
have a profound effect on the availability of services in many Hispanic/Latino
communities. As with other service providers, there is an increasing need for
organizations serving the Hispanic/Latino to strengthen their infrastructure and
document their effectiveness in serving persons who engage in behaviors that place
them at risk of HIV infection.

Another challenge facing the Hispanic/Latino community is ensuring that
HIV/AIDS services are effectively distributed. Some communities have a myriad of
organizations, all of which provide similar services to a limited catchment area. In other
communities, perhaps only one program provides a range of services to a
disproportionately large population. Decreases in government funding have resulted in
a decrease in the number of minority programs funded. This has created instances
where an organization is funded to provide services to all communities regardless of
its lack of contacts within a particular community or its ability to serve the needs of
individuals who engage in high-risk behaviors. In such instances, many people may not
be effectively served, while others may not be served at all.

44 The Challenge of HIV/AIDS in Communities of Color

f

 

 
‘

 

Community Concems

In March 1991 the National Commission on AIDS held hearings specifically

addressing issues of concern to the Hispanic/Latino community. Beyond this hearing,
which was held in Chicago, the Commission has met with and received testimony from
leaders of the Hispanic/Latino community at various times over the past three years.
Some of the community concerns that have been brought to the Commission’s
attention include:

Community diversity. Many have expressed their frustration with the lack of
available data on Hispanic/Latino subgroups. The use of a broad-based
"Hispanic/Latino" category does not allow for a true picture of the effects of
the epidemic among the. different groups that comprise the term
Hispanic/Latino.

Community empowerment. Hispanics/Latinos have been underrepresented in
policy positions at the local, state, and federal levels. The majority of
Hispanics/Latinos affected by the AIDS epidemic live under conditions of
poverty. Consequently, there is a need to address the i issues of HIV/AIDS in
the context of poverty. |

Drug users. For the Hispanic/Latino population, drug use is quickly becoming
the primary means of transmission, and it is already the principal transmission
factor in the Hispanic/Latino population in the Northeast, the Midwest, and
the Commonwealth of Puerto Rico. This population is also very difficult to
reach, owing to the transient nature of the population itself. Programs to reach
this population have been hampered by the failure to assure treatment on
demand or access to harm-reduction programs such as methadone
maintenance or needle exchange.

Education. School-based education programs have been the primary focus of
AIDS education programs targeted toward children and adolescents. However,
many Hispanic/Latino children and adolescents do not benefit from these
programs because the community has the highest dropout rate in the nation.
It is estimated that only 50 percent of Hispanics/Latinos aged 25 and older
have completed high school, compared with 80 percent of the non-
Hispanic/Latino population.

Families. There is a concern that present HIV programs do not target the
family as a whole. Whether it strikes a gay man or a substance user, among
Hispanics/Latinos HIV disease is a family and community issue; thus, when’
a member of the family becomes ill, the family tends to respond in unison.

Hispanic/Latino gay men. There is a concern among Hispanic/Latino gay men
that homophobia is pervasive in the Hispanic/Latino community. Gay men in
the Hispanic/Latino community are concerned with the perceived
inappropriateness of funding and lack of responsiveness and support for the
development of programs to target exclusively the needs of the
Hispanic/Latino gay male.

The Challenge of HIV/AIDS in Communities of Color 45
Immigration. The current immigration policy excluding HIV-infected
individuals from entry and residency in the United States has had a
disproportionately negative impact among the large numbers of undocumented
and migrant workers in the Hispanic/Latino community. The Immigration
Reform and Control. Act granted legal status to a large number of
undocumented aliens. However, those who tested positive for HIV have been
forced to apply for waivers, which are rarely granted. Others have not come
forward to apply for amnesty or seek care for HIV-related conditions for fear
of deportation. The Commission was also told about incidents of migrant
workers becoming infected with HIV while in the United States but being
refused reentry into the country by American-based companies after testing
positive for HIV. .

Language. Language and culture present additional obstacles in providing
prevention and service programs for Hispanics/Latinos. For those who are
monolingual Spanish speakers, health care providers often do not have
resources for effective translation, which impairs service delivery and forces
inappropriate situations, such as when minor children must translate for
parents in situations where confidentiality may be an issue.

Leadership. Although some community leaders and elected officials have
shown outstanding support for AIDS prevention and service organizations,
there is currently a need to further educate and encourage the involvement of
Hispanic/Latino community leaders and elected officials on the issue. As in
other communities of color, HIV/AIDS has not been a popular cause with the
leadership of the Hispanic/Latino community. Among these leaders AIDS is
seen as something that will damage the image of the Hispanic community.

Migrant workers. The migration patterns of migrant farm workers force many
individuals to live in camps and move from state to state, never establishing
the permanent residence needed to qualify for services from local
communities. Many have to live in remote communities, where sanitation and
close living quarters produce unique health problems. Health care for these
communities, particularly HIV-related services, is limited or nonexistent.

Orphans. The Hispanic/Latino community is extremely concerned about the
surviving children of HIV-infected families. As HIV disease continues to
expand among injection drug users and their partners, the need arises to
develop a plan for the future of the children of an infected couple or single
parent. In order to avoid having these children become part of the already
overburdened foster care system, parents must be assisted in making
arrangements for the care of their children after their death.

Prevention. There is concern that national HIV/AIDS information and
prevention efforts have not reached the Hispanic/Latino community because
of the inadequate number of programs that target the community from a
linguistic as well as a cultural perspective. The majority of the public
information and education efforts have targeted the mainstream population.

The Challenge of HIV/AIDS in Communities of Color
e Research. Hispanics/Latinos are concerned that cultural elements will affect
the results of studies conducted to determine the knowledge, attitudes, beliefs,
and behavior of Hispanics/Latinos. Inappropriate research methodologies have
resulted in significant variances in findings, depending on where interviews are
conducted and whether the subject is alone or with his or her partner.

e Women. There is concern in the Hispanic/Latino community that women’s
issues have not been adequately addressed in the context of HIV prevention
and care. In the Hispanic/Latino community women play an important role
in educating Hispanic families about health and in securing health care for
immediate and extended family members. Too often, Hispanic/Latina women
who are HIV infected do not receive the support they need to care for their
families and at the same time address their own health needs. In addition, for
a large number of Hispanic/Latina women, issues of reproductive rights have
become increasingly critical. Many women feel pressured to terminate their
pregnancy in the face of moral scrutiny regarding their reproductive choices.
HIV-infected Hispanic/Latina women have also reported a high incidence of
violence in the home, apparently as a result of their HIV status.

The Challenge of HIV/AIDS in Communities of Color 47
The Asian American and Pacific Islander Community |

Community Description

Asian Americans and Pacific Islanders are two separate and culturally distinct
groups, but they are combined for reporting purposes. Even these broad nomenclatures
underscore the differences between the two. "Asian American" is a term applied to
persons in the United States "having origins in any of the original people of the Far
East.” "Pacific Islander’ is a more ambiguous term that includes persons who live in a
group of predominantly small island nations that have a close relationship with the
United States (i.e, Guam, American Samoa, the Republic of Palau, the Republic of
the Marshall Islands, the Commonwealth of the Northern Mariana Islarids, and the
Federated States of Micronesia), Native Hawaiians, and others who are immigrants or
long-standing American citizens whose ancestors came from South Pacific islands.

Asian Americans/Pacific Islanders compose the third-largest minority group
after African Americans and Hispanics/Latinos. They are also the fastest-growing
community of color in the United States. The diversity of the Asian American/Pacific
Islander population is extraordinary. Federal data collectors currently recognize the
following subcategories: Chinese, Japanese, Hawaiian, Filipino, and Other
Asian/Pacific Islanders. The last category alone includes over 39 different nationalities.
Collectively, they speak over one hundred languages and dialects. Moreover, there can
be great cultural, social, economic, and political differences within specific ethnic
groups, as well as between dissimilar ethnic groups, for example, between fifth-
generation Chinese Americans and new immigrants (Lee and Fong, 1990).

- After decades of intermarriage, the Pacific Island populations are a mixture ©
of racial backgrounds. Individuals often identify with the ethnic culture that is dominant
in their household, and when this fact is not taken into consideration, demographic
data that report race/ethnicity as one choice will not reflect accurate information for
a population as racially and ethnically diverse as the Pacific Islanders. For example, the
1990 Census identified approximately 138,000 self-identified Hawaiians residing in|
Hawaii, while the state department of health’s annual Health Surveillance Program
estimated that by 1986 there were already nearly 205,000 residents of Hawaiian
ancestry.

Epidemiology

Of the 242,146 total AIDS cases in the United States through September 1992,
CDC reported that 1,525 (0.6%) were Asian Americans/Pacific Islanders. The Asian
American/Pacific Islander male-to-female ratio of AIDS cases and deaths is
approximately 11 to 1. In 1991 Asian Americans/Pacific Islanders had an annual AIDS
case rate of 3.7 per 100,000 population (CDC, 1992d).

48 The Challenge of HIV/AIDS in Communities of Color
When exposure categories are examined, it is apparent that the HIV epidemic
among Asian Americans/Pacific Islanders is still in the early stages. Of the AIDS cases
in the Asian American/Pacific Islander community, 74 percent were contracted by men
who have sex with men, compared with 58 percent for all races. Among the pediatric
cases, 16 percent have been in children with hemophilia, and 37 percent of pediatric
AIDS cases among Asian American/Pacific Islanders were due to transmission of HIV
through blood transfusions or blood products. All of these categories are strikingly
higher than the national averages and resemble data collected at the beginning of the
epidemic in other racial groups. (See Table 6.)

Conversely, only 4 percent of all AIDS cases in adult/adolescent Asian
Americans/Pacific Islanders have been due to injection drug use. Furthermore, only
47 percent of pediatric cases have been due to perinatal transmission from a mother
at risk for HIV. These rates are much lower than the national averages. Again, these
data are reminiscent of epidemiologic data obtained in the early years of the
HIV/AIDS epidemic for other groups.

Knowledge, Attitudes, Beliefs, and Behaviors

National surveys of knowledge, attitudes, beliefs, and behaviors do not
presently report data for Asian American/Pacific Islanders as a separate group.

Health Status

Impediments to gathering adequate data on the health status of the Asian
American/Pacific Islander community include the small size of the population, its
diversity, and the inability to make inferences at the national level about the community
as a whole. State and local studies have been done, but they cannot be generalized to
the whole Asian American/Pacific Islander community because of the diversity of the
community and differences in their geographic distribution.

Two diseases in particular, however, have been identified as being of critical
importance to health among Asian Americans/Pacific Islanders. According to the
Public Health Service, the two infectious diseases that have followed immigrant Asian
and Pacific Islander population subgroups to this country are tuberculosis and hepatitis
B. Tuberculosis rates differ by country of origin; in some Asian American/Pacific
Islander populations, the disease is seen at rates 40 times higher than the national
average. Age is also a factor, with rates particularly high among those over age 45.
Hepatitis B infection is also found at a much higher rate among Asian immigrants. The
overall carrier rate in the United States is estimated to be 0.3 percent of the
population; however, among immigrants from Southeast Asia the estimated rate is 4
percent (PHS, 1990).

Comprehensive health care, particularly in the areas of prenatal care, HIV
testing, nutrition, and substance counseling, is desperately needed on many of the
Pacific islands. Integration of services would allow HIV testing to be disguised among
a number of health services, thereby decreasing the anxiety associated with going to an
explicit HIV testing site. However, currently, there is little prospect of comprehensive
health care, and the average island medical and mental health professional needs more
information and education on HIV/AIDS.

The Challenge of HIV/AIDS in Communities of Color 49
TABLE 6: Adult/adolescent AIDS Cases by Sex, Exposure Category, and Race/ethnicity, Reported
through September 1992, United States.

 

Asian American/
Pacific Islander Total4
Number Percent Number Percent

 

ADULT/ADOLESCENT
MALE
Exposure category
Men who have sex with men 1,112 (81) 136,912 (65)
Injection drug use 47 (3) 41,631 (20)
Men who have sex with men and Inject drugs 34 =( 2) 15,203 (7)
Hemophilia/coagulation disorder 23. (2) 1,910 ( 1)
Heterosexual contact: 12 (1) 5,983 (3)
Sex with Injection drug user 6 2,448
Sex with person with hemophilia - 12
Bom in Pattem Il° country 3 2,003
Sex with person bom in Pattern II country 1 105
Sex with transfusion recipient with HIV infection - 94
Sex with HlV-infected person, risk not specified . 2 1,321
Receipt of blood transfusion, blood components, or $8 (4) 2,956 (1)
tissue
Other/undetermined? 91 (7) 7,553 (4)
Subtotal 1,378 (100) 212,148 (100)
FEMALE
Exposure category .
Injection drug use 18 (14) 12,844 (50)
Hemophilia/coagulation disorder - (#) 43 (0)
Heterosexual contact: 47 (387) 9,238 (36)
Sex with injection drug user 16 5,612
Sex with bisexual male 15 ' 789
Sex with person with hemophilia 2 110
Born In Pattern fl country - 841
‘Sex with person bom in Pattern Il country . - 90
Sex with transfusion recipient with HIV infection 3 . 196
- Sex with HIV-infected person, risk not specified 41 1,600
Receipt of blood transfusion, blood components, or 40 (31) 1,877 (7)
tissue
Other/undetermined 23 (18) 1945 (7)
Subtotal 128 (100) 25,947 (100)

 

TeHeterosexual contact” cases include persons who report either specific heterosexual contact with a person with,
or at increased risk for, HIV infection (e.g., an injection drug user), or persons presumed to have acquired HIV
infection through heterosexual contact because they were born in countries with a distinctive pattern of transmission
termed “Pattern Il* by the World Health Organization (MMWR 1988;37:286 -8,293-5). Pattern Il transmission Is
observed In areas of sub-Saharan Africa and In some Caribbean countries. In these countries, most of the reported
cases occur In heterosexuals and the male-to-female ratio is approximately 1:1. Injection drug use and homosexual
transmission either do not occur or occur at a low level.

2Nineteen adults/adolescents and two children developed AIDS after receiving blood screened negative for HIV
antibody. Five additional adults developed AIDS after receiving tissue or organs from HIV-infected donors. Two of
the five received organs or tissue from a donor who was negative for HIV antibody at the time of donation.

Ssothere refers to seven health care workers who developed AIDS after occupational exposure to HIV-infected
blood, as documented by evidence of seroconversion; and to two patients who developed AIDS after exposure to HIV
within the health care setting, as documented by laboratory studies. *Undetermined" refers to patients whose -

mode of exposure to HIV Is unknown. This includes patients under investigation; patients who died, were lost to
follow-up, or refused an interview; and patients whose mode of exposure to HIV remains undetermined after
investigation. .

‘includes 551 persons whose race/ethnicity is unknown.
SOURCE: Adapted from CDC HIV/AIDS Surveillance, October 1992.

50 The Challenge of HIV/AIDS in Communities of Color

é

 
 

TABLE 6 continued: Pediatric AIDS Cases by Sex, Exposure Category, and Race/ethnicity,
Reported through September 1992, United States.

 

Asian American/
Pacific islander Total*
Number Percent Number Percent

 

PEDIATRIC
Exposure category
Hemophilia/coagulation disorder 3 (16) 183 = (5)
Mother with/at risk for HIV infection via: 9 (47) 3,480 (86)
Injection drug use 3 1,634
Sex with injection drug user 2 704
Sex with bisexual! male 1 77

Sex with person with hemophilia 18

Bom in Pattern Il" country - 271

Sex with person bom In Patter II country - 17

Sex with transfusion recipient with HIV infection - 17

Sex with HIV-infected person, risk not specified 1 176

Receipt of blood transfusion, blood components, or - 75

tissue

Has HIV infection, risk not specified 2 491
Receipt gf blood transfusion, blood components, or 7 (37) 303 (7)

tissue
Other/undetermined® - (#) 85 (2)
Subtotal . 19 (100) 4,051 (100)

 

NOTE: See technical notes and source from Table 6.

Programs

Programs for the prevention and care of HIV/AIDS among. Asian
Americans/Pacific Islanders have only recently been developed and funded. Currently,
a number of organizations are working to meet the HIV/AIDS service needs of the
Asian American/Pacific Islander community. On the national level, organizations such
as the Asian American Health Forum, the Association of Asian/Pacific Community
Health Organizations, and the National Asian/Pacific American Families Against
Substance Abuse are working to raise awareness about the HIV/AIDS service needs
of Asian American/Pacific Islander communities. Community-based organizations such
as the Asian/Pacific AIDS Coalition in San Francisco, the Asian and Pacific Islander
Coalition on HIV/AIDS in New York, and the Asian Pacific AIDS Education Project
in Los Angeles are providing direct prevention and education services targeting specific
Asian American/Pacific Islander subpopulations.

. However, HIV/AIDS prevention and care programs that appropriately meet
the needs of Asian Americans/Pacific Islanders are not available in many of the
communities where the need for such services exist. This can be attributed to the
tendency to dismiss the need for such targeted services based on the comparatively low
number of AIDS cases among Asian Americans/Pacific Islanders, a general lack of
awareness about the service needs of Asian Americans/Pacific Islanders, a lack of
culturally appropriate services, and insufficient financial support.

The Challenge of HIV/AIDS in Communities of Color | 51
Few publicly or privately funded AIDS programs target Asian
Americans/Pacific Islanders for AIDS-related prevention and care services. In its effort
to increase the involvement of national and regional racial and ethnic minority
organizations in HIV information and education efforts, the Centers for Disease
Control has funded one organization in the nation to provide HIV prevention activities
to Asian Americans/Pacific Islanders. The Association of Asian/Pacific Community
Health Organizations is funded by CDC to integrate HIV prevention activities with

services of member community health centers and to develop a media campaign to —

change public perceptions about HIV/AIDS within Asian American/Pacific Islander
communities. | .

It is important to note that, even where Asian Americans/Pacific Islanders are
targeted by HIV/AIDS intervention efforts, the scope of the services provided are
often insufficient to meet the needs adequately of diverse and often monolingual Asian
American/Pacific Islander ethnic subgroups. Given the diversity among Asian
American/Pacific Islander communities, unique challenges exist in the delivery of
prevention, education, and other HIV-related services. Except in cases where there is
a very large client population, access to bilingual/bicultural AIDS service providers or
materials is minimal. Interpretation services to meet the language needs of Asian
Americans/Pacific Islanders in the health care setting are severely limited.
Consequently, fear of difficulties in communication remains a significant factor for
many Asian Americans/Pacific Islanders when they consider whether or not to seek
testing, counseling, and care.

In particular, persons who have only recently immigrated to the United States

require special attention, both in terms of prevention messages and in access to health

care. Legal uncertainties and complexities frequently deter undocumented immigrants
from seeking appropriate care and services for which they qualify. Helping such
individuals overcome their reluctance to utilize services to which they are entitled
deserves urgent attention.

Community Concems

In May 1991 the Commission conducted a hearing in San Francisco on the
impact of the HIV epidemic among Asian Americans/Pacific Islanders. In addition, the
Commission received written testimony from individuals and organizations. Among the
concerns raised were:

e Alienation. A person living with HIV disease may face tremendous alienation
within their own ethnic and cultural communities. The stigma can be
compounded by the revelation that a person is homosexual or is an injection
drug user. .

e Clinical trials. For clinical trials and other research opportunities, specific and

_ affirmative guidelines need to be developed for multilingual and multicultural

access and for the recruitment of participants from the Asian
American/Pacific Islander communities.

e Community diversity. A number of witnesses presenting testimony before the
Commission emphasized the need for recognition of the diversity among Asian

52 The Challenge of HIV/AIDS in Communities of Color

é

 
 

 

Americans/Pacific Islanders in order to ensure the integrity of AIDS programs
that target specific racial or ethnic minority populations. When Asian
Americans/Pacific Islanders are aggregated in surveillance reports, it is
impossible for communities to know exactly where their attention should be
focused. Asian American AIDS service providers expressed a need to know
the extent of the HIV/AIDS problem in their communities.

Community empowerment. There is a great need to foster coalition building
among Asian American/Pacific Islander organizations. Asian
American/Pacific Islander organizations across the country need to get
together and exchange information on a regular basis. Information exchange
is a valuable tool for training health professionals and sensitizing service
providers on important issues concerning Asian Americans/Pacific Islanders
with regard to the AIDS epidemic. "

Community input. As with other communities, Asian Americans emphasized
the need to improve efforts to include community members in HIV program -
planning and policy development. Specifically, witnesses pointed out the need
to establish mechanisms that provide a forum for input from Asian
Americans/Pacific Islanders, such as the establishment of advisory committees
and the hiring of racial and ethnic minorities to staff federal, state, and local
health agencies.

Education. Witnesses voiced concern that money was being wasted on the
translation of pamphlets and brochures originally developed for other
audiences. Witnesses warned that the messages were often inappropriate for
the Asian American/Pacific Islander audiences (for example, when a pamphlet
mentions AIDS in African American and Hispanic/Latino populations but
makes no mention of AIDS among Asian Americans/Pacific Islanders).
Moreover, translation may be so inadequate that it renders the pamphlet
incomprehensible. Furthermore, literal translations of words from one
language to another loses the crucial and most meaningful nuances that
transmit the correct interpretation of the messages.

Funding. Frustration was voiced regarding the ability of the Asian
American/Pacific Islander community to compete effectively for funding.
Anecdotal accounts of AIDS cases and HIV-positivity were not specific
enough to submit and support funding proposals. In addition, the concern was
raised that because the numbers of AIDS cases among Asian
Americans/Pacific Islanders are low HIV/AIDS proposals developed for
Asian Americans/Pacific Islanders would be given a lower priority for
funding.

Immigration. As with other communities, Asian Americans/Pacific Islanders
who spoke with the Commission strongly encouraged the elimination of HIV-
seropositive status as a basis for immigration exclusion and the ending of
mandatory HIV testing for immigrants and refugees.

The Challenge of HIV/AIDS in Communities of Color 53
Language. Language i is a significant barrier to accessing HIV education and
health care in Asian American/Pacific Islander communities. For service
providers, reaching significant numbers of Asian Americans/Pacific Islanders
requires the capacity to provide services in a variety of languages and dialects.
For many Asian Americans/Pacific Islanders, the already complex and
burdensome task of securing appropriate HIV services is compounded by the
inability to speak fluent English.

Model minority myth. The common stereotype that Asian Americans are
categorically high achievers who excel academically and economically and who
suffer from relatively few health concerns obscures serious problems in the
Asian American/Pacific Islander community, including poverty, substance use,
and significant health concerns.

Outreach. A major component of HIV/AIDS service delivery involves
outreach to publicize services and to create trust between clients and service
providers. Without these outreach efforts comprehensive HIV services cannot
be delivered. In particular outreach efforts are essential in reaching newly
arrived immigrants and refugees who may be monolingual.

Concerns regarding the U.S. Trust Territories in the Pacific included:

Community empowerment. Existing community-based organizations can be
empowered to involve the community. HIV is not regarded as a major health
problem by most Pacific Islanders; however, other health concerns do surface,
and eventually HIV/AIDS can be addressed within the context of these other
concerns.

. Confidentiality. On the Pacific Islands, it is typical for one public health nurse

to take care of the health needs of all the people on the island. Because they
know everything and everybody, all public health nurses must be educated on
the importance of confidentiality. Typical small communities on these islands
have or will have major problems with confidentiality aspects of risk
assessments (that is, HIV testing, AIDS reporting, counseling, and partner
notification). For example, HIV testing is conducted on some islands once a
week on the same day, at the same time. This is widely known, and anyone
showing up at the clinic on that day at that time is therefore suspected of
being HIV positive, and gossip travels fast.

Cultural competence. Individuals who do not come from or are not known in
the community are generally not trusted or believed. In these islands,
academic degrees do not confer credibility and respect—familiarity within a

_ community does. Position qualifications for health educators and outreach
workers should be adjusted so that paraprofessionals can fill the positions and .

do an effective job of educating the community about. HIV and AIDS, thus
helping empower the community to ) take responsibility for its health problems.

The Challenge of HIV/AIDS in Communities of Color

é

 
 

The Challenge of HIV/AIDS in Communities of Color

Denial. Many people on these islands firmly believe that AIDS is a disease
that affects only white men. Island governments are facing the difficult
dilemma of creating laws to protect people from diseases that may be brought
to the islands by tourists, and at the same time maintaining the economic
stability that tourism brings.

Funding. Funding criteria for support of prevention efforts should extend
beyond the number of AIDS cases reported. These islands are particularly
vulnerable if HIV infection becomes established; prevention must take place
before, not after, cases of AIDS are reported. One funding strategy could be
to recognize areas that report sharp rises in STDs and teen pregnancy and
automatically to target those areas for increased HIV prevention funding.

Transportation. Many islands have only one test site, often located in the
island’s main city, which may be as far as 60 miles from some residents, who
may have no means of transportation. Island-based organizations need
considerable support for large travel budgets, a circumstance often not
understood by funding agencies. When apparently inflated travel budgets are
cut substantially by funding sources, the effectiveness of projects diminishes.
The American Indian and Alaskan Native Community

Community Description

Historical demographers estimate that at the time of the initial European
exploration and settlement of North America, there were 12 to 15 million aboriginal
"Indian" inhabitants of what is now the contiguous 48 states. By the end of the
nineteenth century, the Native American population had been reduced to about
250,000. This demographic collapse was due largely to epidemics of infectious diseases,
which raged from the beginning of contact with Europeans. Smallpox, tuberculosis,
typhoid, cholera, typhus, and other diseases decimated the native "New World"
population, who had no immunity to "Old World" pathogens. Only in the twentieth
century has the population of Native Americans begun to recover; by the 1990 USS.
Census, 1.87 million people reported themselves as being of Native American descent.

Native North Americans were not and are not now one people, but many
nations, each with its own language, traditions, and history. There are over five
hundred Native American tribes and Alaskan Native villages in the United States, each
of which has government-to-government relationships with the United States and
determines its own citizenship requirements as a sovereign nation. In 1985 there were
_ just under one million legally recognized tribal citizens.

According to the 1990 Census, over half of all Native Americans live in
standard metropolitan statistical areas. Fewer than one-quarter live.on reserved lands,
and the rest live in rural areas. Oklahoma has the largest Native American population
and California has the second largest. Oklahoma is not a reservation state, and
California has only a few reservations and rancherias. Most of Oklahoma’s Native
American population was removed from other parts of the continent to what before
1907 was the Indian Territory. The vast majority of California’s Native American
population is urban and moved to the state voluntarily. 7

The damage caused by the disruption of traditional economies and cultures
owing to disease, war, wholesale population removals, and targeted government
campaigns is still evident today in many Native American communities. In spite of this,
many Native American communities are making positive changes with a spirit of self-
determination and a renewed sense of pride in traditional cultural values and
experience.

Epidemiology

Although, as of the end of September 1992, Native Americans/Alaskan Natives
accounted for fewer than | percent of AIDS cases reported in the United States, the
incidence of AIDS increased faster among Native Americans/Alaskan Natives than
among any other ethnic group from 1989 to 1990 (Metler, Conway, and Stehr-Green,

56 The Challenge of HIV/AIDS in Communities of Color

é

 

 

 
 

 

1991). As of the end of September 1992, CDC reported 416 diagnosed cases of AIDS
in Native Americans, 14 percent of whom were women. (See Table 7.) Twelve cases
of pediatric AIDS were also reported.

Male-to-male sexual transmission accounted for just over half the reported
cases (55%), with injection drug use accounting for another 18 percent. AIDS cases
were reported in every age group. AIDS in Native Americans has been reported in
every Indian Health Service Area (Chase, 1992).

AIDS among Native American women is overwhelmingly due directly or
indirectly to injection drug use; 59 percent of the female adult/adolescent Native
American AIDS cases were exposed through injection drug use, and 14 percent became
infected through sex with an injection drug user. All Native American/Alaskan Native
pediatric AIDS cases for which the transmission risk was reported were due to
perinatal transmission from a mother who either used injection drugs or had sex with
an injection drug user; none were due to hemophilia-related blood products or to blood
transfusions. It is also interesting to note that among the Native American gay/bisexual
men with AIDS those who report also injecting drugs is very high (16%) compared to
whites (7%), African Americans (7%), and Hispanics/Latinos (7%) (CDC, 1992e).

There is substantial evidence that actual AIDS cases among Native Americans
are undercounted. Studies of death certificates and AIDS service organization records
in Los Angeles and Seattle found that between two-thirds and three-fourths of Native
Americans with AIDS were misrepresented as white or Hispanic (Lieb et al., 1989;
Smyser, Helgerson, and Hess, 1992).

Two seroprevalence studies offer evidence of the possible extent of HIV
infection among Native Americans. The Indian Health Service (IHS) and CDC have
been studying blood samples taken from women attending prenatal clinics and from
men and women being evaluated in an IHS-funded STD clinic since 1989. The
_ researchers estimate that, based on their findings, there are approximately 2,730 Native
Americans (range 1,210 to 4,250) who are infected with HIV but are asymptomatic.
HIV infection in rural areas among Native American women in their third trimester
of pregnancy was found at rates four to eight times higher than rates for childbearing
women of all races in the same states. This calculation of the number of seropositive
Native Americans may underestimate the true size of the problem because urban areas
with high rates of HIV seroprevalence were underrepresented in the study. The
Military Seroprevalence Study begun in October 1985 tests all applicants for military
service for HIV antibodies. In that study, Native Americans have had a seroprevalence
rate of 0.08 percent (CDC, 1991Ic).

Knowledge, Attitudes, Beliefs, and Behaviors

National surveys of knowledge, attitudes, beliefs, and behaviors do not
presently report data on Native Americans as a group. Consequently, there is very little
representative information on their knowledge about and attitudes toward HIV and
AIDS. One survey that looked at the level of HIV knowledge in Northwestern
American Indian communities (Hall et al., 1990) found that, although the communities
in Oregon and Idaho uniformly had a good understanding of the three primary modes
of HIV transmission (sexual, perinatal, and injection drug use), misconceptions also
persisted. For example, 96 percent of those surveyed knew that the virus can be
transmitted from one person to another during sexual intercourse; however, 52 to 55

The Challenge of HIV/AIDS in Communities of Color 57
TABLE 7: Adult/adolescent AIDS Cases by Sex, Exposure Category, and Race/ethnicity, Reported
through September 1992, United States.

 

American indian/

 

Alaskan Native Total*
Number Percent Number Percent
ADULT/ADOLESCENT
MALE
Exposure category
Men who have sex with men 222 (64) 136,912 (85)
Injection drug use 39 = (11) 41,631 (20)
Men who have sex with men and inject drugs 56 (16) 15,203 (7)
Hemophilla/coagulation disorder 9 (3) °1,910 (1)
Heterosexual contact: 4 (1) 5,983 (3)
Sex with injection drug user 3 2,448
Sex with person with hemophilia - 12
Bor in Patter Il country - 2,003
’ Sex with person bom in Pattem Il country | - 105
Sex with transfusion recipient with HIV Infection - 94
Sex with HIV-infected person, risk not specified 1 1,321
Receipt gf blood transfusion, blood components, or 2 (1) 2,956 (1)
tissue
Other/undetermined® 14 (4) 7,553 (4)
Subtotal 346 (100) 212,148 (100)
FEMALE
Exposure category
Injection drug use 34 (59) 12,844 (50)
Hemophilia/coagulation disorder - (#) 43 (0)
Heterosexual contact: 11 (19) 9,238 (36)
Sex with injection drug user 8 §,612
Sex with bisexual male 2 789
Sex with person with hemophilia - 110
Born In Pattern Il country - 841
Sex with person bom In Pattern Il country - 90
" Sex with transfusion recipient with HIV infection - 198
Sex with HIV-infected person, risk not specified 1 1,600
Receipt of blood transfusion, blood components, or 5 (9) 1,877 = (7)
tissue
Other/undetermined 8 (14) 1945 (7)
Subtotal 58 (100) 25,947 (100)

 

Tsteterosexual contact® cases include persons who report either specific heterosexual contact with a person with,
or at increased risk for, HIV Infection (e.g., an Injection drug user), or persons presumed to have acquired HIV
infection through heterosexual contact because they were born in countries with a distinctive pattern of transmission
termed *Pattern Il" by the World Health Organization (MMWR 1988;37:286-8,293-5). Pattern II transmission is
observed in areas of sub-Saharan Africa and in some Caribbean countries. in these countries, most of the reported
cases occur in heterosexuals and the male-to-female ratio is approximately 1:1. Injection drug use and homosexual
transmission either do not occur or occur at a low level. ,

2Nineteen adults/adolescents and two children developed AIDS after receiving blood screened negative for HIV
antibody. Five additional adults developed AIDS after receiving tissue or organs from HIV-infected donors. Two of
the five received organs or tissue from a donor who was negative for HIV antibody at the time of donation.

S-other® refers to seven health care workers who developed AIDS after occupational exposure to HIV-infected
blood, as documented by evidence of seroconversion; and to two patients who developed AIDS after exposure to HIV
within the health care setting, as documented by laboratory studies. "Undetermined? refers to patients whose

mode of exposure to HIV Is unknown. This Includes patients under investigation; patients who died, were lost to

follow-up, or refused an interview; and patients whose mode of exposure to HIV remains undetermined after
Investigation.

‘includes 551 persons whose race/ethnicity Is unknown.

SOURCE: Adapted from CDC HIV/AIDS Surveillance, October 1992.

58

The Challenge of HIV/AIDS in Communities of Color

é
TABLE 7 continued: Pediatric AIDS Cases by Sex, Exposure Category, and Race/ethnicity,
Reported through September 1992, United States.

 

American Indian/
Alaskan Native Total‘
Number Percent Number Percent

 

PEDIATRIC
Exposure category
Hemophilia/coagulation disorder 1 (8) 183 (5)
Mother with/at risk for HIV infection via: 11. (92) 3,480 (86)
Injection drug use 4 1,634
Sex with Injection drug user 1 704
Sex with bisexual male - 77
Sex with person with hemophilia - 18
Bom in Pattern Il" country - . 271
Sex with person born in Pattem II country - 17
Sex with transfusion recipient with HIV infection - 17
Sex with HIV-infected person, risk not specified 2 176
Receipt of blood transfusion, blood components, or : 75
tissue
Has HIV infection, risk not specified 4 491
Receipt of blood transfusion, blood components, or - (4). | 303 (7)
tissue
Other/undetermined® - (#) 85 (2)
Subtotal 12 (100) 4,051 (100)

 

NOTE: See technical notes and source from Table 7.

percent also thought that HIV could be acquired by eating food prepared by someone
who is HIV infected and 57 to 63 percent thought HIV could be acquired by being
coughed and sneezed on by someone who is HIV infected (Hall et al., 1990).

Health Status

The health status of Native Americans is lower according to almost every
indicator than the U.S. population as a whole; life expectancy is 71.1 years as compared
with 74.4 for the white population. However, data from 1985 to 1987 showed that 33
percent of all Native Americans die before the age of 45, compared with 11 percent
for the white population in 1986. Substance abuse, primarily alcohol use, accounts for
most of the top ten causes of early death, either directly or indirectly. Alcohol abuse,
suicide, unintentional injuries, and interpersonal violence account for many deaths
among young Native Americans (Nickens, 1991).

A study conducted between 1984 and 1988 shows rates of STDs such as
gonorrhea, syphilis, and chlamydia are on average twice as high for Native Americans
as for the U.S. population as a whole (Toomey, Oberschelp, and Greenspan, 1989). In
some states, the rates are seven to ten times higher. Sexual activity starts early, as
evidenced by teen pregnancy rates; 20 to 25 percent of Native American babies are
born to mothers 18 years of age or younger (OTA, 1986). Injection drug use may be
a more serious problem than most health professionals realize (Rowell, 1990).
Tuberculosis rates are five times higher for Native Americans than for the U.S.
population as a whole (IHS, 1991).

The Challenge of HIV/AIDS in Communities of Color 59
STD rates may be higher for Native Americans because of high rates of
substance use, overall poor socioeconomic conditions, and lack of access to the level
of health care enjoyed by other Americans. It has been only within the past year that
any movement has occurred within the Indian Health Service to begin an aggressive
campaign to prevent STDs and to intervene early in the course of the infection.

The increase in the number of cases of tuberculosis, especially multidrug-
resistant TB, is particularly troubling for Native Americans. TB was a serious disease
in the Native American population in the first half of this century, and many living now
were exposed to TB in their youth, making them particularly vulnerable to the disease.
Living conditions in some Native American communities are not much better in 1992
than they were in 1950. Substance abuse also increases the difficulty of ensuring
adherence to treatment regimens among TB-infected patients.

The Indian Health Service is the provider of last resort for the minority of
Native Americans who live on or near reservations. IHS funds primary clinics in some
urban centers, but more intensive services are generally not available from IHS for the
majority of the urban Indian population.

IHS provides care directly through its own hospitals and clinics and through
hospitals operated by the tribes themselves. It also contracts for specialized care or
other services. Access to care is limited both by IHS’s annual appropriations by
Congress and the uneven distribution of services among IHS areas. The cost of care
for eligible Native Americans with HIV infection has put and will continue to put a
severe burden on an already strained IHS budget.

For Native American people living in rural areas, the lack of nearby service
providers is as much a barrier to access as it is for other rural Americans. This is
especially true of Alaskan Native villagers whose only access to care may be the
airplane. There are many days, however, when planes cannot fly because of weather

or other environmental conditions. In the lower 48 states, some Native Americans with.

AIDS have reported having to drive 70 miles in each direction over poorly maintained
roads to obtain basic health care services.

Programs

Unfortunately, the response of the Indian Health Service and tribal
governments to the threat of HIV has been slow. HIV/AIDS programs of any sort are
a relatively new development in Native American communities. The first programs
were funded in 1987-88, although AIDS had been diagnosed in Native Americans
before 1983. The principal sources of funding for HIV prevention activities for Native
Americans have been primarily the CDC, the Office of Minority Health, state
departments of health, and the U.S. Conference of Mayors.

The Indian Health Service AIDS program began in 1989 but has played only
a minor role to date in funding HIV prevention and education projects for Native
Americans. It has provided training for pretest and posttest HIV-antibody counselors
in each area office and has given small prevention education grants to service units.

With CDC, IHS is conducting a national seroprevalence survey of prenatal clinics, —

substance abuse programs, and STD clinics. In 1991 IHS set up a national drug depot
for zidovudine (AZT), aerosolized pentamidine, and other AIDS-related drugs at the
Carl Albert Hospital in Ada, Oklahoma, and established a system for making these
drugs available to all eligible HIV-infected Native Americans through IHS or IHS-
funded providers.

60 | The Challenge of HIV/AIDS in Communities of Color

é
The various of types of Native American organizations working in the field,
funded and unfunded, include national organizations, organizations based in individual
states, and local and community-based organizations scattered throughout the country.
Inter-ethnic coalitions between Native Americans and others have been very important
in ensuring the inclusion of Native Americans in discussions and policy decision-making
related to AIDS.

The majority of existing efforts among Native American communities consist
of HIV prevention education programs. More often than not, these programs are
targeted at the population as a whole and at youth. It is rare for Native American
AIDS programs to target men who have sex with men or injection drug users
specifically, although some such programs do exist.

The National Indian AIDS Media Consortium, based in Minneapolis, is a
nationwide media education effort involving over 150 Native American newspapers,
magazines, newsletters, and radio stations. The consortium has operated since early
1989, providing regular press packets and camera-ready ads or audio public service
announcements to encourage regular reporting on HIV and related issues for the
Native American audience in the United States and Canada.

The National Congress of American Indians (NCAI), the oldest national tribal
organization in the United States, is a recipient of a subcontract with George
Washington University under a grant from the Ford Foundation to work with state,
local, and tribal governments on HIV-related policies. NCAI and the National Native
American AIDS Prevention Center (NNAAPC) recently published a handbook for
tribal leaders on the development of HIV policies.

Programs that provide case management and client advocacy services for
Native Americans also exist in some areas. NNAAPC operates a national case
management demonstration project in Oklahoma City—the Ahalaya Project—and on
the Pascua Yaqui and Tohono O’odham reservations in southern Arizona with Health
Resources and Services Administration funds for Special Projects of National
Significance from the Ryan White CARE Act. CARE Act funds are supporting case
management services at the American Indian AIDS Institute of San Francisco, the
American Indian Community House in New York City, the Minneapolis Indian Health
Board, and the San Diego Urban Indian Health Center.

Community Concerms

In February 1991 the Commission conducted a series of site visits to Arizona,
New Mexico, Oklahoma, Minnesota, and South Dakota in order to better understand
the challenges facing Native Americans as they struggle to confront the HIV/AIDS
epidemic. In addition, the Commission heard from caregivers serving Eskimo and Aleut
populations in Alaska. Among the many concerns raised by AIDS service providers,
tribal leaders, community members, and persons living with AIDS were:

e Bumout. In the absence of communitywide awareness, a few dedicated
individuals are providing the prevention education, direct service delivery,
advocacy, and support, as well as education to tribal leaders and governmental
bodies on the need to address the emerging epidemic among Native
Americans. The efforts of such individuals have been critical to raising
awareness regarding the HIV epidemic among Native Americans.

The Challenge of HIV/AIDS in Communities of Color 61
62

Comununity diversity. Group-specific and culturally competent AIDS education |
activities are sorely needed. No one approach to education and prevention will
work for all Native Americans. Each nation or community has culturally
specific attitudes and beliefs, particularly with regard to sex and sexuality. This
diversity in cultural and traditional beliefs require that prevention programs
be designed and delivered with input from each nation or community. Native
American AIDS service providers impressed upon the Commission that, in
their experience, in order for AIDS education messages and materials to be
effective for many Native Americans they must be brought to them by other
members of their community. Recognition must also be given to the different
needs of Native Americans living in isolated rural areas, such as Alaska, and
those living in urban settings. .

Confidentiality. A consistent theme throughout the Commission’s site visits was
the issue of confidentiality. Individuals and tribal leaders voiced concern over
the inability of the Indian Health Service to protect the confidentiality rights
of patients. Evidence of breaches of confidentiality served to reinforce already
prevalent fears of discovery and discrimination that may prevent individuals
from seeking HIV education, care, and treatment. Similar concerns were
raised regarding the lack of anonymous test sites in states such as Minnesota
and South Dakota.

Demographic collapse. The poor health status of Native Americans as a whole
and their vulnerability to HIV owing to those risk factors already discussed
makes HIV a threat to this population. From the point of view of Native
Americans themselves, there is a perceived threat of another demographic
collapse in the population if measures are not taken rapidly at all levels to
prevent the spread of the virus.

Denial. Recognition that the HIV epidemic is an issue for Native Americans
is inhibited by denial within Native American communities as to the
prevalence of homosexual and bisexual behavior as well as drug use..

Funding. During several visits, the Commission heard of the need to have
CDC fund tribal programs directly instead of through layers of state and
Indian Health Service bureaucracy. The need for longer-term funding of
programs was also made evident.

Health care providers. Many individuals who spoke to the Commission
expressed concern regarding the availability of health care providers
knowledgeable about caring for people with HIV disease.

' Invisibility. Perhaps the single greatest barrier to HIV prevention and care |

among Native Americans is invisibility. This invisibility is a result of two
factors: the low numbers of Native Americans in the overall U.S. population
and the multiple layers of stereotypes about Native Americans inherited
through popular culture. This two-tiered invisibility places Native American
people at a disadvantage when fighting AIDS, to the extent that public
resources are divided through a political system that rewards either numbers

The Challenge of HIV/AIDS in Communities of Color

é
or visibility through effective organizing. Unfortunately, Native Americans are
few in number and have been unable to capture public attention.

e Services. Throughout the Commission’s visits in Native American communities,
individuals and service providers complained of a lack of coordination among
federal, state, and tribal governments in their efforts to deal with the HIV
epidemic in Native American communities. Historically complicated
relationships between the federal and state governments and the Native
American nations has made effective HIV service delivery and health care
financing difficult. Individuals described situations in which they were shuffled
between agencies or, even worse, turned away because there was no clear
definition of agency responsibility or patient eligibility.

The Challenge of HIV/AIDS in Communities of Color 63
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Day, S. (1990) AIDS and homophobia in american indian communities: A vision for
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De Carpio, A.B., Carpio-Cedraro, F.F., and Anderson, L. (1990) Hispanic families
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de la Cancela, V. (1989) Minority AIDS prevention: Moving beyond cultural
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Elder-Tabrizy, K.A., Wolitski, R.J., Rhodes, F., and Baker, J.G. (1991) AIDS and
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72 The Challenge of HIV/AIDS in Communities of Color

 

 
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Gilman, S.L. (1988) Disease and Representation. Ithaca: Cornell University Press.

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Hernandez, J.T., and Smith, FJ. (1991) Racial targeting of AIDS programs
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Holman, P.B., Jenkins, W.C., Gayle, J.A., Duncan, C., and Lindsey, B.K. (1991)
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Jaynes, G.D., and Williams, R.M. Jr. (1989) .4 Common Destiny: Blacks and American
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The Challenge of HIV/AIDS in Communities of Color 73

 

 
 

Koonin, L.M., Atrash, H.K., Lawson, H.W., and Smith, J.C. (1991) Maternal mortality
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Krieger, N., and Margo, G. (1990) Introduction: AIDS: The politics of survival.
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Krueger, L.E., Wood, R.W., Diehr, P.H., and Maxwell, C.L. (1990) Poverty and HIV
seropositivity: The poor are more likely to be infected. AIDS 4:811-814.

Leman, N. (1991) The other underclass. The Atlantic Monthly. December:96-110.

Levine, C. and Dubler, N.N. (1990) Uncertain risks and bitter realities: The
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_ Lindan, C.P., Hearst, N., Singleton, J.A., et al. (1990) Underreporting of minority
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Marin, B.V., and Marin, G. (1992) Predictions of condom accessibility among
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Marin, B.V., Marin, G., Juarez, R.A., Sorensen, J.L. (1992) Intervention from family
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Mays, V.M., and Cochran, S. D. (1987) Issues in the perception of AIDS risk and risk
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74 The Challenge of HIV/AIDS in Communities of Color

 

 
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for prevention. Issues in Science and Technology Spring:89-94.

Rosenthal, E. (1990) Abortions often denied to women with AIDS virus. New York
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Rowell, R.M. (1990) Native Americans, stereotypes and HIV/AIDS: Our continuing
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The Challenge of HIV/AIDS in Communities of Color 75

 

 
 

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Valdiserri, R.O., West, G.R., Moore, M., Darrow, W.W., and Hinman, A.R. (1992)
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Watters, J.K., and Lewis, D.K. (1990) HIV infection, race, and drug-treatment history.
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Weissman, J.S., Stern, R., Fielding, S.L., and Epstein, A.M. (1991) Delayed access to
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Medicine 114(4):325-331.

Wilkinson, D.Y., and King, G. (1987) Conceptual and methodological issues in the use
of race as a variable: Policy implication. Milbank Quarterly 65:56-71. |

Wyatt, G.E. (1991) Examining ethnicity versus race in AIDS related sex research.
Social Science and Medicine 33(1):37-45.

76 The Challenge of HIV/AIDS in Communities of Color

 

 
APPENDIX A

Witness List

 

The Commission thanks the following people who presented formal testimony at a
hearing before the Commission during the past three years and whose testimony was
helpful in furthering the Commission’s understanding of HIV/AIDS issues confronting

communities of color.

The Honorable Hector Luis Acevedo
Brigadier General Clara L. Adams-Ender, R.N.
Bishner Akil, M.D.

Henry Alonzo

Hortensia Amaro, Ph.D.

_ Paula Amaro

Kathryn Anastos, M.D.

Wayne Antkowiak, M.P.H., M.Ed.

Edmund H. Baca, Jr.

Maria Bandes

Xylina D. Bean, M.D.

Lori Beaulieu

Willie Betelyoun

Pedro Borras, M.D.

Jerome Boyce

America Bracho, M.D., M.P.H.
Allan Brandt, Ph.D.

Lawrence S. Brown, M.D., M.P.H.

Eileen Carr

Emilio Carrillo, M.D.

Susan Castillo .
Kenneth Castro, M.D., M.P.H.
Fernando Chang-Muy, Esq.
Kiki Ching, M.F.A.

Lei Chou

Charlton Clay

Elsie Cofield

Deborah Cotton, M.D., M.P.H.

The Challenge of HIV/AIDS in Communities of Color

Molly Coye, M.D., M.P.H.
Roslyn Cropper, M.D.
Keith Cylar, M.S.W.

Iris Davis, M.D.

Castulo de la Rocha

Maria de los Angeles Calderon
Jane Delgado, Ph.D., MS.
DiAna DiAna

Clemente Diaz, M.D.

Ralph DiClemente, Ph.D.
Dazon Dixon

Nancy Dubler, Esq.

Sean Duque

Paula Elerick Espinosa
Nima Eshghi
LaShaun Evans

Carmen Feliciano de Melecio, M.D.
Reginald Fennell, Ph.D.

Joaquin Fernandez Dumont
Manuel Fimbre, A.C.S.W.

J. Craig Fong

Gerald Friedland, M.D.

Luis Fuentes

Mindy Fullilove, M.D.

Robert Fullilove, Ed.D.

Catlin Fullwood

Appendix A-1

 
 

Ana Garcia, L.C.S.W.

Barbara Garcia

Deliana Garcia

The Reverend Francisco Garcia
Marilyn H. Gaston, M.D.

Jacob Gayle, Ph.D.

Jaime Geaga

Daisy Gely, M.P.H.E.

Gil Gerald

Aida Giachello, Ph.D.

Billy Gill

Dean Goishi

Miguel Gomez

Sally Graham

Jamata Gray

Fernando Guerra, M.D., M.P.H.
Tessie Guillermo

Alyce Gullattee, M.D., F.A.P.A.
Nilsa Gutierrez, M.D.

David Hansell, Esq.
Rashidah Hassan, R.N.
Lynn Hayes

Jose C. Hernandez, Jr.
Luis Hernandez

Ralph Hernandez
Ileana Herrell, Ph.D.
Marjorie Hill, Ph.D.
Martin Hiraga

John L.S. Holloman, Jr., M.D.
Hadley Hudson

Bessie Hughes, R.N.

Yvonne Hutchinson, R.N.P., M.A.

Gen Tinuma, M.P.H.

Cory Jacobs

Collette Jacques, R.N.
Michael James

Janice Jireau

Robert Johnson, M.D.
Ronald Johnson

A. Billy S. Jones

Wilbert Jordan, M.D., M.P.H.

Paul Kawata, M.A.
Kerrily Kitano, M.S.W.

Si Hoi Lam, M.D.
Juan Ledesma
Deborah Lee

Lori Lee

Rita Lepicier

Carol Levine
Sharon Lim-Hing
Nina Nicolette Lira

Raul Magafia, Ph.D.

German V. Maisonet, M.D.

Luis Maldonado ~
Miguelina Maldonado
Floyd J. Malveaux, M.D., Ph.D.
John Manzon

Sam Marinez

Rosa Martinez

Frankie Mason

Henry Masters, III, M.D.

Adolfo Mata

Alberto Mata, Ph.D.

Vickie Mays, Ph.D.

Joan McCarley, M.S.W..

Renee McCoy

Sandra McDonald

Hermann Mendez, M.D.

Janet L. Mitchell, M.D., M.P.H.
Inca Mohamed .
Jasmin Shirley Moore, M.S.P.H.
Lewis Tanner Moore, M.Ed.

Juan Morales, M.P.H.E.

Alva A. Moreno

Nga Nguyen, R.N., M.P.H.

Sinh Nguyen

Tony Nguyen

Norman Nickens, Esq.

Enrique Nieves, M.S.

Surgeon General Antonia Novello
Jose Nunez Lopez, M.D.

Joanna Omi, M.P.H.
Katie O’Neil, Esq.

Angel Ortiz

Lydia Otero

Guillermo Otero, M.D. —

Appendix A-2 The Challenge of HIV/AIDS in Communities of Color

 

 
Toni P.

John Pacheco

Tim Panzer

Jose Pares-Avila, M.A.
Carmen Paris, M.P.H.
George Perez, M.D.
Jose Perez

Sallie Perryman

Lydia Platon

Jane Po

Veneita Porter

Suki Ports

- Beny Primm, M.D.

Bobbie J. Primus, Ed.D., M.P.H., R.N.

Jovanna Quinn

Carlos H. Ramirez Ronda, M.D.
Marilyn Rivera

Trina Rivera de Rios, Ph.D.
Jaime Rivera Duefio, M.D.
Robby Robison

La Francis Rodgers-Rose, Ph.D.
Helen Rodriguez-Trias, M.D.
Rene Rodriquez, M.D.
Rochelle L. Rollins, M.P.H.

S. Denise Rouse, M.P.H.

Ron Rowell, M.P.H.

Johnny Rullan, M.D., M.P.H.

Jackie Sadler, M.P.H.
The Honorable Jose Saler-Zapata
Romeo Sanchez

Nancy Santiago, M.D.
Wifredo Santiago

Merina Sapolu

David Satcher, M.D., Ph.D.
The Honorable Kurt Schmoke
Peter Selwyn, M.D., M.P.H.
Yolanda Serrano

Walter Shervington, M.D.
Paul Shimazaki

Sonia Singleton

Ruth Slaughter

Mark Smith, M.D., M.B.A.
Brenda Smith, Esq.

Mario Solis-Marich

Marie St. Cyr, M.S.W.

The Honorable Louis Stokes

The Challenge of HIV/AIDS in Communities of Color

Irma Strantz, Dr.P.H.

Kianja Stroud

The Honorable Isabel Suliveres de
Martinez

Alpha Thomas

Stephen B. Thomas, Ph.D.
Mimi Tiemble

Jose Toro, Ph.D.

Laura E. Torres

Elizabeth Valdez, M.D.
Nora Vargas, Esq.
Carmen Vasquez, M.S.Ed.
Anita Vaughn, M.D.
Manuel Vega

Raul Villalobos, M.D. |
Sandra Vining-Bethea
Janet Voorhes, M.P.H.

Bob White

Phillip Wiley

Reggie Williams —
Jane Wilson, M.S.

Phill Wilson

Dorothy Wong, M.B.A.
David Woodring
Wayne S. Wright

Velma Yemota
Mary Young, M.D.
Yvette

John Zamaro

Pedro Zamaro

Andrew Ziegler, M.H.S.A.
Carmen D. Zorilla, M.D.

Appendix A-3

 
APPENDIX B

Agendas
NATIONAL COMMISSION ON AIDS
Agenda |
HIV Disease in African American Communities
Curran Conference Room
100 North Holiday Street
City Hall
Baltimore, Maryland
December 17-18, 1990
Monday, December 17, 1990
8:30 a.m. - 8:40 a.m. Welcome: June E. Osborn, M.D.
8:40 a.m. - 9:00 a.m. Overview: Harlon Dalton
9:00 a.m. - 10:30 am. Understanding a Legacy of Mistrust
Presenter: Mark Smith, M.D., M.B.A.
Respondents: Marie St. Cyr, M.S.W.
Alpha Thomas
Alyce Gullattee, M.D., F.A.P.A.
10:30 a.m. - 10:45am. Break
10:45 a.m. - 12:15 p.m. Organizing African American Communities
Presenter: Wilbert Jordan, M.D., M.P.H.
Respondents: Sandra McDonald
Sonia Singleton

Elsie Cofield

12:15 p.m. - 1:30 p.m. Lunch

The Challenge of HIV/AIDS in Communities of Color Appendix B-1

 
 

1:30 p.m. - 3:00 p.m. Communities Working Together—Pitfalls and Promises of
Coalition Building
Presenter: Catlin Fullwood
Respondents: Phill Wilson
Keith Cylar, M.S.W.
3:00 p.m. - 3:15 p.m. Break
3:15 p.m. - 4:45 p.m. Determining What is Culturally Appropriate
Presenter:  Rashidah Hassan, RNCIC
Respondents: Jacob Gayle, Ph.D.
Reggie Williams
4:45 p.m. - 5:30 p.m. Public Comments
6:00 p.m. Reception: Hosted by the Honorable Kurt L. Schmoke,
Mayor of Baltimore and Elias Dorsey, Acting
Commissioner of Health
Tuesday, December 18, 1990
1:15 p.m. - 1:30 p.m. Remarks: The Honorable Kurt L. Schmoke, Mayor of

Baltimore

NATIONAL COMMISSION ON AIDS

Agenda

Arizona and New Mexico Site Visits
HIV Disease in Native American Communities

February 25-26, 1991
Monday, February 25, 1991

7:30 am. . - Breakfast meeting with urban Native American leaders
La Frontera Center

Welcoming Remarks

Acardio Gastelum, Chairman, Pascua-Yaqui Nation

Andrew Lorrentine, Acting Director, Tohono O’odham Health
Department

Dr. Floyd H. Martinez, Executive Director, La Frontera Center

8:30 a.m. Travel to New Pascua, Arizona

Appendix B-2 The Challenge of HIV/AIDS in Communities of Color

 

 
9:00 a.m.

10:30 a.m.

11:45 a.m.

12:45 p.m.

2:15 p.m.

2:30 p.m.

3:15 p.m.

Roundtable with members of the Pascua-Yaqui Nation,
New Pascua

Travel to Sells, Arizona

Community lunch with members of the Tohono O’odham Nation,
Courtyard of the Tohono O’odham Health Department,
Highway 86, Sells

Roundtable with members of the Tohono O’odham Nation,
Tohono O’odham Health Department

Drive through Sells en route to the Sells U.S. Public Health
Service Indian Hospital, Highway 86, Sells

Visit to the Sells U.S. Public Health Service Indian Hospital

Drive to the Tucson Airport

Tuesday, February 26, 1991

7:30 am.

8:15 a.m. |

9:00 a.m.

10:00 a.m.

11:00 a.m.

11:40 a.m.

12:45 p.m.

Breakfast with Melvin Harrison, Central Navajo AIDS Coalition
Drive to Window Rock, Arizona, capital of the Navajo Nation
Visit AIDS train-the-trainers session, Window Rock, Arizona ~

Meet with tribal officials at the Navajo Nation President’s Office
Complex

Drive to Gallup, New Mexico

Visit to the Gallup Indian Medical Center Nizhoni Boulevard,
Gallup .

Drive through Gallup en route to the Gallup Airport

NATIONAL COMMISSION ON AIDS

Agenda

Minnesota and South Dakota Site Visits

HIV Disease and the American Indian/Alaskan Native Communities

The Challenge of HIV/AIDS in Communities of Color

February 27-28, 1991

Appendix B-3

 
 

 

Wednesday, 27 February 1991

8:30 a.m.

9:45 a.m.

10:00 a.m.

11:00 a.m.

11:45 a.m.

12:30 p.m.

1:45 p.m.

2:30 p.m.

3:00 p.m.

Appendix B-4

Breakfast, The Cafe at the St. Paul Hotel, 350 Market Street
St. Paul, Minnesota

Joined by Norman Landsem, AIDS Coordinator, Bemidji Area
Office, Indian Health Service

Depart for the Center School, Minneapolis —

Center School, 2421 Bloomington Avenue South

Sharon Day, Executive Director, Minnesota American Indian AIDS
Task Force

Lori Beaulieu, Training Coordinator, National Native American
AIDS Prevention Center

Carole LaFavor, person living with AIDS

Representatives of Minnesota State-wide Indian Services
Organizations

Performance of "Ni Nokomis Zagayug" (My Grandmother’ s Love)
by The Ogitchidag Gekinooamaagad Players

Tour of the Minneapolis American Indian Center, 1530 Franklin
Avenue East

Lunch at the Minneapolis Indian Health Board Clinic, 1315 East
24th Street

Joined by Greg Moses, Yukon Kuskokwin Health Corps, and

Terrance Booth, Alaska Native Health Board .
Tour of the Minneapolis Indian Health Board Clinic
Rene Whiterabbit, AIDS Project Coordinator

Joan Myrick, AIDS Coordinator, American Indian Healthcare
Association

Depart for the Shakopee Mdewakanton Sioux Community

Tour of the reservation and meeting with tribal officials, 2330 Sioux
Trail, Prior Lake

Leonard Prescott, Chair
Sally Milroy, Program Administer

The Challenge of HIV/AIDS in Communities of Color

 
4:00 p.m.

5:30 p.m.

7:35 p.m.

Meeting with members of the Wisconsin Winnebago Health and
Human Services Division, the Great Lakes Inter-Tribal Council,
and the Minnesota Tribal AIDS Coordinators

Depart for St. Paul-Minneapolis airport

Flight to Rapid City, South Dakota

Thursday, 28 February 1991

8:00 a.m.

10:00 a.m.

11:00 a.m.

12:00 p.m.

2:00 p.m.

2:50 p.m.

Depart for the Pine Ridge Reservation

Meeting with South Dakota reservation representatives

Charon Asetoyer, Native American Women’s Health Education
Resource Center

Cecilia Fire Thunder, Director of Health Services, Pine Ridge
Reservation |

Willy Bettelyoun, person living with AIDS

Lorelei DeCora, R.N., Rosebud Reservation

Tour of the reservation

Depart for the Rapid City airport

Arrive at the airport

Flight to St. Paul-Minneapolis airport

NATIONAL COMMISSION ON AIDS

Participants

Minnesota and South Dakota Site Visits

HIV Disease and the American Indian/Alaskan Native Communities

February 27-28, 1991

Ms. Lori-K. Beaulieu, Training Coordinator Fond du Lac Reservation
- The National Native American AIDS Business Council
Prevention Center

Indian Health Service

Ms. Carole LaFavor

Ms. Kathleen Annette, M.D.

Mr. Robert Peacock, Chairman — Bemidji Area Office

The Challenge of HIV/AIDS in Communities of Color Appendix B-5

 
 

Mr. Norman Landsem
Bemidji Area Office

Minnesota State-wide Indian Services
Organizations Representatives

Ms. Sharon Day
Executive Director
Minnesota American Indian AIDS Task Force

Mr. Roger Head, Director
Minnesota Indian Affairs Council

Ms. JoAnne Stately
Minnesota Indian Affairs Council

Mr. Darrell Wadena, Chair
Minnesota Chippewa Tribe

Native Alaska Representatives

Mr. Terrance Booth, Program Manager
Alaska Native Health Board

Mr. Greg Moses
Yukon Kuskokwin Health Corps

Minneapolis Indian Health Board

Ms. René Whiterabbit, AIDS Coordinator
American Indian Healthcare Association
Ms. Joan Myrick, AIDS Coordinator
Shakopee Mdewakanton Community

Ms. Sally Milroy, Program Administrator
Mr. Leonard Prescott, Chair |
Wisconsin Winnebago Tribe

Dr. Vijay Prabhaker, Director
Department of Health and Human Services

Great Lakes Inter-Tribal Council

Ms. Star Ames-Nielsen, AIDS Coordinator

Appendix B-6

Minnesota Tribal AIDS
Coordinators

Ms. Rachelle Danelle
Ponemah Clinic

‘Ms. Mike Snesrud, P.H.N.

Fond du Lac Reservation

Ms. Paula Woods, P.H.N.
White Earth Reservation

South Dakota Reservation
Representatives

Ms. Charon Asetoyer, Director

Native American Womens’
Health Education Resource
Center

Mr. William Bettelyoun
Person living with AIDS

Ms. Lorelei DeCora, R.N.
Rosebud Reservation

Ms. Cecilia Fire Thunder,
Director

Health Services

Pine Ridge Reservation

The Challenge of HIV/AIDS in Communities of Color

 

 
 

 

NATIONAL COMMISSION ON AIDS
Agenda
Oklahoma Site Visits
HIV Disease and the Native American Communities
February 27-28, 1991

Wednesday, 27 February 1991

9:30 a.m. Depart for the Comanche tribal complex
10:00 a.m. Tour of the Comanche tribal complex in Lawton, Medicine Park
Exit on Interstate 40
| 10:30 a.m. Discussion with the members of the Inter-Tribal AIDS Coalition
12:00 p.m. Depart for Oklahoma City

1:30 p.m. Lunch in Oklahoma City at Applewood Restaurant, 4301
Southwest 3rd Street |

Joined by Pat Gideon, M.D., of the Oklahoma Area Office, Indian

Health Service

2:45 p.m. _—*rDeepart for the Oklahoma City Indian Health Clinic

3:00 p.m. Tour of the Oklahoma City Indian Health Clinic, 1214 North
Hudson Street

6:00 p.m. Dinner at the Hilton Inn Northwest

Joined by Mr. Curtis L. Harris, AIDS Coordinator, American,
Indian Community House, New York City

Thursday, 28 February 1991

7:30 a.m. Depart for the Sac & Fox tribal complex
9:00 a.m. Meeting with the Elders of the Sac & Fox Tribe, Highway 99,
| south of Stroud
10:00 a.m. Depart for Sapulpa
10:45am.  —- Meeting with representatives of 't the Creek Nation Health Board,

Sapulpa Indian Health Center, 1125 East Cleveland

The Challenge of HIV/AIDS in Communities of Color Appendix B-7

 
 

12:15 p.m. Depart for Tulsa

1:00 p.m. Lunch in Tulsa at the Louisiane Restaurant, 1400 South Boston
Street
Joined by representatives of the Cherokee Nation of Oklahoma
2:45 p.m. Depart for the airport

NATIONAL COMMISSION ON AIDS

Participants
Oklahoma Site Visits
HIV Disease and the Native American Communities |

February 27-28, 1991

Ms. Gloria Bellymule, R.N.
. Oklahoma City Indian Health Clinic

Mr. Curtis L. Harris, AIDS
Coordinator .

American Indian Community House,
New York City

Intertribal AIDS Coalition

Ms. Emma Autaubo, EMS
Coordinator
Caddo Tribe —

Ms. Debra L. Birney, CHR
Coordinator
Absentee Shawnee Tribe

Mr. Richard Chalopah
Kiowa Tribe Alcohol Program

Ms. Margaret Enright
Planned Parenthood

Mr. Alfred Franklin
Cheyenne-Arapaho Treatment Center

Appendix B-8

Ms. Frances Harrison, CHR
Coordinator
Wichita Tribe

Ms. Ruth Jenks
Absentee Shawnee Tribe

Ms. Michelle Jensen
USPHS Indian Health Center

Ms. Marquita Kickapoo »
Absentee Shawnee Tribe

Mr. Shae Kinnaman
CH/AIDS Educator

Ms. Marsha Lindsey
Comanche County Memorial
Hospital

Mr. Rob Meyers

USPHS Indian Health Center
Ms. Yvonne Monetathchi

Ms. Sherrie Nowlin
Oklahoma Alliance Against Drugs

The Challenge of HIV/AIDS in Communities of Color

 
 

_Ms. Doris Olivor, CHR

Ms. Marcella Panana
Cheyenne and Arapaho Tribes

Mr. Glenn Starr
Cheyenne Tribe

Ms. Jan Vassar
Sac & Fox Historian

Mr. Frank Wahpepaah
Sac & Fox Tribal Health Director

Ms. Flora Weryackwe
Ft. Sill Apache Tribe

Cherokee Nation of Oklahoma

Ms. Pamela Irons, Director
Health and Human Services
Cherokee Nation of Oklahoma >

Col. Brenda Cummings, R.N. —
Administrator, Indian Health Care
Resource Center

_Mr. Truman Geren, L.P.N. —
AIDS Coordinator

Mr. Stephen Short, M.D.
W.W. Hastings Indian Hospital

Ms. Dixie Stewart, R.N., B.S.
AIDS Coordinator

Ms. Ellen Wolfe, P.H.N.
Claremont Hospital

Comanche Nation
Ms. Teresa Lopez, Director
Comanche Tribe Substance Abuse

Program

Mr. Kenneth Saupity
Tribal Chairman

The Challenge of HIV/AIDS in Communities of Color

Ms. Bonnie Turner
Tribal Administer

Creek Nation of Oklahoma

Ms. Sherry Baker, R.N., Director
Public Health Nurses

Ms. Kathryn Bell

Mr. Thomas Berryhill, Member
Creek National Council .-

Ms. Shelly Crow, R.N., Chair -
Creek Nation Health Board

Ms. Sally Foster, Administrator
Creek Nation Healthcare System

Mr. Ed Frye

Mr. Toni Hill

‘Tribal Town Leader

Mr. David Smith, D.O.
Chief, Medical Staff
Eufala Clinic

Ms. Kathy Stubbs, D.O.

Sac & Fox Nation

"Mr. Gaylon R. Franklin, Sr.

Second Chief

Mr. Elmer Manatowa
Principal Chief

Indian Health Service

Mr. Pat Gideon, M.D.
Oklahoma Area Office

Appendix B-9

 
 

March 11, 1991

 

2:00 p.m.

2:15 p.m. - 3:00 p.m.

3:15 p.m. - 4:30 p.m.

4:45 p.m.:- 5:30 p.m.

6:00 p.m. - 8:00 p.m.

March 12, 1991

8:30 a.m.

8:40 a.m.

Appendix B-10

NATIONAL COMMISSION ON AIDS

Agenda

HIV Disease in Hispanic Communities

The Park Hyatt Hotel
Terrace Room
800 North Michigan Avenue
Chicago, Illinois

March 11-12, 1991

Optional Site Visits

Departure from the Park Hyatt Hotel
800 North Michigan Avenue, Chicago

Visit Erie Family Health Center
1656 W. Chicago Avenue, Chicago |
Contact: David Ley (312) 666-3488

Visit Cook County Hospital
1835 W. Harrison Street, Room 912, Chicago
Contact: Dr. Marge Cohen (312) 633-5080

Visit Pilsen/Little Village Mental Health Center
2635 W. 23rd Street, Chicago
Contact: Luis Ortiz (312) 927-1228
Reception
Mexican Fine Arts Museum, 1852 West 19th Street,
Chicago, Illinois
Opening Remarks

June E. Osborn, M. D., Chairman, National Commission on
AIDS

Framing the Problem

Aida Giachello, Ph.D., Midwest Hispanic AIDS Coalition, |
Chicago, Illinois

The Challenge of HIV/AIDS in Communities of Color

 
9:00 a.m.

9:45 a.m.

10:00 a.m.

10:45 a.m.

11:30 a.m.

12:15 p.m.

 

 

Prevention

Illeana Herrell, Ph.D., Center for Prevention Services, Centers
for Disease Control, Atlanta, Georgia

Hortensia Amaro, Ph.D., Boston University School of Public

Health, Boston, Massachusetts

America Bracho, M.D., M.P.H., Latino Family Center,
Detroit, Michigan

Adolfo Mata, Center for Prevention Services, Centers for
Disease Control, Atlanta, Georgia

Break
Services

Nilsa Gutierrez, M.D., New York AIDS Institute, New York,
New York .

Emilio Carrillo, M.D., New York Health and Hospitals
Corporation, New York, New York

Manual Fimbre, A.C.S.W., San Jose State University, San Jose,
California

Paula Amaro

Migrant, Rural, and Undocumented Populations

Deliana Garcia, National Migrant Resource Program, Austin,
Texas

Sam Martinez, Washington State Migrant Council, Sunnyside,
Washington .

Barbara Garcia, Salud Para la Gente, Watsonville, California

Policy and Leadership Issues

Helen Rodriguez-Trias, M.D, Brookdale, California

Alberto Mata, Ph.D., Division of Applied Research, National
Institute on Drug Abuse

John Zamora, Texas Department of Health, Austin, Texas

Miguel Gomez, National Council of La Raza, Washington,
D.C. .

Miguelina Maldonado, Hispanic AIDS Forum, New York,
New York

Summary Discussion

Ileana Herrell, Ph.D.

Nilsa Gutierrez, M.D.
Deliana Garcia

Helen Rodriguez-Trias, M.D.

The Challenge of HIV/AIDS in Communities of Color Appendix B-11

 
 

12:45 p.m.
2:00 p.m.
5:00 p.m.

6:00 p.m.

Lunch

Commission Business
Adjourn

Reception

Tania’s Restaurant, 2659 North Milwaukee Avenue, Chicago,
Illinois

Affiliations listed for identification purposes only.

8:30 a.m.
8:35 a.m.

8:45 a.m. .

9:30 a.m.

10:45 a.m.

Appendix B-12

NATIONAL COMMISSION ON AIDS

Agenda

HIV Disease and Asian, Asian American, and
Pacific Islander Communities

San Francisco, California
May 17, 1991

Opening Remarks: June E. Osborn, M.D., Chair
Remarks: Paul Kawata
Introduction: Historical Perspective
Gen Iinuma
Tessie Guillermo
Suki Ports

Moderator: Jane Po

Roundtable Discussion: Impact of HIV Disease Among Asians,
Asian Americans and Pacific Islanders

Kiki Ching Sharon Lim-Hing Merina Sapolu
Lei Chou _ Sinh Nguyen Paul Shimazaki
Billy Gill Robby Robison Velma Yemota

Martin Hiraga

Break

The Challenge of HIV/AIDS in Communities of Color

 
11:00 a.m.

12:15 p.m.

12:45 p.m.

2:00 p.m.

4:00 p.m.

Moderator: Fernando Chang-Muy

Roundtable Discussion: Provision of Services

Wayne Antkowiak Lori Lee Tony Nguyen
Jaime Geaga John Manzon Joanna Omi
Dean Goishi Nga Nguyen Dorothy Wong
Kerrily Kitano

Public Comments
Lunch
Commission Business

Adjourn

The Challenge of HIV/AIDS in Communities of Color Appendix B-13

 
 

APPENDIX C

Pianning Committees

Hispanic Hearing Planning Committee

Rosemunt, Illinois 60018

February 14, 1991
America Bracho, M.D. Ileana Herrel, Ph.D.
Medical Director Assistant Director for Minority
La Casa Family Services Health

713 Junction
Detroit, Michigan 48209

Aida Giachello, Ph.D.

Acting Director

Midwest Hispanic AIDS Coalition
College of Social Work
University of Illinois

Post Office Box 4348, M-C 309
Chicago, Illinois 60680

Miguel Gomez

Director, AIDS Center
National Council of La Raza
810 First Street, N.E.

Suite 300

Washington, D.C. 20002

Nilsa Gutierrez, M.D.

Assistant Medical Director
AIDS Institute

New York Department of Health
5 Penn Plaza, 4th floor

New York, New York 10001

The Challenge of HIV/AIDS in Communities of Color

Center for Prevention Services

Centers for Disease Control

Rd MSS. E-07, Rm 309
1600 Clifton
Atlanta, GA 30333

Raul Magafia, Ph.D.
52 Shooting Star Road
Urbine, California 92706

Miguelina Maldonado
Executive Director

Hispanic AIDS Forum

121 Avenue of the Americas
Suite 505

New York, New York 10013

George Rivera, Ph.D.

Catholic Hispanic AIDS Leadership
Education (CHALE AIDS Project)

4535 Winona Court

Denver, Colorado 80212

Appendix C-1

 
Jessie Sanchez

1017 North Main Street
Suite 208

San Antonio, Texas 78212

John Zamora

Minority HIV Education Specialist
HIV Division

Bureau of HIV and STD Control
Texas Department of Health

1100 West 49th Street

Austin, Texas 78756

Asian American and Pacific Islander
Hearing Planning Committee

San Francisco, California

April 10, 1991

Sam Akinaka

BAART

45 Franklin Street

3rd Floor

San Francisco, CA 94102

Ignatius Bau

Staff Attorney

Immigration and Refugee Rights
Project

San Francisco Lawyers’ Committee
for Urban Affairs

301 Mission Street, Suite 400

San Francisco, CA 94105

Rene Durazzo

San Francisco AIDS Foundation
25 Van Ness Avenue

San Francisco, CA 94102

Michael Foo

_ GAPA Community HIV Project
2261 Market Street #447

San Francisco, CA 94114

Tessie Guillermo

Executive Director

Asian American Health Forum
116 New Montgomery Street #531
San Francisco, CA 94105

Appendix C-2

Steve Lew

Asian/Pacific AIDS Coalition
Dept. 513

P.O. Box 597004

San Francisco, CA 94159

Jim Naritomi

Asian American Communities
Against AIDS

1840 Sutter Street Suite 200

San Francisco, CA 94115

Tony Nguyen

Community Health Outreach Worker

Center for Southeast Asian Refugee
Resettlement

875 0’Farrell Street

San Francisco, CA 94109

Nicky Philips

Association of Asian Pacific
Community Health Organizations

1212 Broadway #730

Oakland, CA 94612

Jane Po

Coordinator

SFAF Filipino AIDS Hotline
25 Van Ness Avenue

San Francisco, CA 94102

The Challenge of HIV/AIDS in Communities of Color

é
Alaine Raymundo

Filipinos for Affirmative Action
310 8th Street
Oakland, CA 94612

Robby Robison

Treatment Advocate

Early Advocacy and Care for HIV
625 O'Farrell Street

San Francisco, CA 94109

Dorothy Wong

Progam Director

Asian AIDS Project

300 Fourth Street #401
San Francisco, CA 94107

Douglas Yaranon

California AIDS Intervention
Training Center

507 Divisadero Street, Suite B

San Francisco, CA 922-6135

Velma Yemota

Volunteer

GAPA Community HIV Project
2261 Market Street #447

San Francisco, CA 94114

The Challenge of HIV/AIDS in Communities of Color

Appendix C-3
APPENDIX D
Commission Documents

For any of the information about reports and proceedings
of the National Commission on AIDS please contact:

The National Commission on Acquired Immune Deficiency Syndrome
1730 K Street, N.W., Suite 815

Washington, D.C. 20006

(202) 254-5125

TDD (202) 254-3816

Records are kept of all Commission proceedings and are available for
public inspection at the above address.

For copies of all reports please contact:
National AIDS Clearinghouse

P. O. Box 6003

. Rockville, Maryland 20849-6003

1-800-458-5231 .
TDD 1-800-243-7012

Reports

First Interim Report to the President and the Congress: "Failure of U.S. Health Care
System to Deal with HIV Epidemic." December 1989.

Working Group Summary Report on Federal, State, and Local Responsibilities. March
1990.

Second Interim Report to the President and the Congress: "Leadership, Legislation,
and Regulation.” April 1990.

Third Interim Report to the President and Congress: "Research, the Work-Force, and
the HIV Epidemic in Rural America." August 1990.

Annual Report to the President and the Congress. August 1990.

Fourth Interim Report to the President and the Congress: "HIV Disease in
Correctional Facilities." March 1991.

The Challenge of HIV/AIDS in Communities of Color Appendix D-1

 
 

a

Report of the Working Group on Social and Human Issues to the National
Commission on AIDS. April 1991.

Fifth Interim Report to the President and the Congress: "The Twin Epidemics of
Substance Use and HIV.” August 1991.

Technical Report Prepared for the National Commission on AIDS. "Financing Health
Care for Persons with HIV Disease: Policy Options." August 1991.

Second Annual Report to the President and the Congress: "America Living With
AIDS." September 1991.

Sixth Interim Report to the President and the Congress: "The HIV/AIDS Epidemic
in Puerto Rico.” June 1992.

Seventh Interim Report to the President and the Congress: "Housing and the
HIV/AIDS Epidemic, Recommendations for Action.” July 1992.

Eight Interim Report to the President and the Congress: "Preventing HIV
Transmission in Health Care Settings.” July 1992.

Statements
Support for Passage of the Americans with Disabilities Act. September 6, 1989.

Support for Increase in AIDS Funding in the FY ’90 Appropriations Bill. September
19, 1989.

Support for the Goal of Treatment on Demand for Drug Users. September 26, 1989.

Support for Continued Funding of Research on Effectiveness of Bleach Distribution.
November 7, 1989. .

Resolution on U.S. Visa and Immigration Policy. December 1989.

Endorsement of Principles and Objectives of Comprehensive AIDS Resources
Emergency (CARE) Act of 1990. March 6, 1990.

Despite Debate Among Epidemiologist, HIV Epidemic Will Have Greater Impact in
1990s than 1980s. March 15, 1990.

Endorsement of Principles and Objectives of AIDS Prevention Act (H.R. 4470) and
Medicaid AIDS and HIV Amendments Act of 1990 (H.R. 4080). May II, 1990.

Endorsement of Principles and Objectives of the Ryan White CARE Act of 1990.
March 6, 1991. .

Appendix D-2 The Challenge of HIV/AIDS in Communities of Color

 
EH
nn

 

Statement on Immigration. July 1991.

Statement on the Meeting Between the National Commission on AIDS and the
Secretary of Health and Human Services. June 25, 1992.

Statement by David E. Rogers, M.D., Vice Chairman, National Commission on AIDS,
on the Resignation of Magic Johnson from the NBA. November 2, 1992.
Information on the Commission

Commission Fact Sheet

Individual Commissioner Biographies

Public Law 100-607 (Creation of the National Commission on AIDS)

The Challenge of HIV/AIDS in Communities of Color | Appendix D-3