and Ethnic Populations
Letter from the ONAP Director
Health Care Services Issues
HIV and STD Connection
Gay Men and Men Who Have Sex With Men
Needs of Women
Youth and Young Adults
Immigrant Farm Workers and Undocumented Persons
circulated reports of a decline in the number of AIDS deaths and
in the number of new AIDS cases due to advances in treatment therapies
have lead many Americans to believe that we have finally turned
the tide on the AIDS epidemic in the U.S.
what most reports fail to mention is that while the number of AIDS
deaths has declined, it has declined unevenly across race and gender
lines (see Chart 1).
importantly, the number of HIV infections has not slowed at all.
An estimated 40,000 to 60,000 Americans are newly infected with
HIV every year and increasingly they are people of color, women,
and young men who have sex with men (MSMs).
rapid expansion of the HIV/AIDS epidemic into communities of color
presents an immense challenge to those working to address the needs
of people living with HIV/AIDS and to stop the further spread of
of the most pressing of these challenges is assuring equal access
to care. A variety of studies clearly indicate that historical disparities
in access to quality health care by people of color are also reflected
in the AIDS epidemic.
addition, prevention and care resources—increasingly directed by
local decision-making processes—are not necessarily shifting to
accommodate the disproportionate impact on communities of color.
solutions to these difficult challenges will be difficult. New partnerships,
new energy, new commitments will all be necessary if we are to stem
is my hope that this brief overview of the HIV/AIDS epidemic as
it relates to racial and ethnic minorities in the U.S. will serve
to educate us all and serve as a resource for those seeking to become
partners in the fight against AIDS.
Office of National AIDS Policy
December 1997, more than 641,000 individuals in the U.S. had contracted
AIDS, of which more than 59%, (375,000) were from racial and ethnic
communities (Blacks, Hispanics/Latinos, Asians and Pacific Islanders,
American Indians/Alaska Natives). Since 1990, the number of AIDS
cases in racial/ethnic populations has been greater than the number
of AIDS cases in Whites, despite the fact that minorities comprise
fewer than 25% of the U.S. population.
from the Centers for Disease Control and Prevention show the two
major modes of transmission in racial and ethnic populations are
men who have sex with men (MSM) and intravenous drug use (IDU).
The trans-mission modes for Whites are different; more than 75%
of the cases in White males were transmitted by men who have sex
with men (MSM), compared to 38% in blacks, 43% in Hispanics, 75%
in Asians and Pacific Islanders, and 59% in American Indians/Alaska
is important to note that the epidemic has also affected different
racial and ethnic communities differently. For example, in Hispanic
males, injection drug use account for 36% of all cases, but only
5% in Asian and Pacific Islander males.
black, Hispanic and American Indian females, more than 40% of cases
are IDU related, but only 17% of such cases in Asian and Pacific
epidemic is also different within racial and ethnic groups.
For example, the main mode of transmission for Hispanics in the
Northeast U.S. is IDU, but for Hispanics in the Southwest it is
difference in the epidemic by region is also complicated by the
fact that there are more than 500 different Federally recognized
Indian tribes. In addition, there are more than 50 Asian dialects
spoken in the U.S., and Hispanics are both U.S. born and come from
more than 29 countries. Blacks are both American born and from overseas
new AIDS cases are among Blacks and Hispanics (62%)
than ¾ of AIDS cases in women are in racial and ethnic populations
pediatric AIDS cases are in racial/ethnic populations
injection drug-related AIDS cases are in racial/ethnic minority
populations (80% in men and 78% in women)
than half of AIDS cases among teen men and ¾ among teen women
are from racial or ethnic population
IN MINORITY COMMUNITIES
many individuals from racial/ethnic backgrounds, AIDS is just one
of the many issues that they must deal with on a daily basis which
affects their lives and which complicates their response to the
epidemic. Issues such as poverty, homelessness, substance abuse,
unemployment, institutionalized racism, homophobia and denial of
AIDS as an issue within their community alters how AIDS is viewed
and ultimately the success of prevention efforts.
messages must be culturally and linguistically tailored to specific
audiences. Complicating the need for targeted messages is the fact
that many communities have traditionally mistrusted government given
a past history of mistreatment by government (e.g., Tuskegee syphilis
experiments, forced sterilization of women, migrating from countries
with oppressive governments), many minorities avoid government-sponsored
programs must be developed which are community-focused, organized
and implemented so individuals are willing to listen to the messages
being conveyed. Despite the statistics, many minority communities
still view AIDS as a gay white male disease, often due to denial
that those individuals most affected exist within their community.
denial is often based on religious beliefs or on cultural norms
that dictate that matters of sexual activity or drug use are not
discussed publicly or openly. This in turn prevents many minority
institutions (e.g., churches, sororities, and national organizations)
from becoming involved in the issue for fear of alienating their
infrastructure necessary to deliver these messages (i.e., community-based
organizations) must be supported so that their efforts are successful.
Historically, this infrastructure has not been in place, and now
minority communities are playing "catch-up" in terms of
obtaining funding, developing programs, and doing outreach to their
Centers for Disease Control and Prevention (CDC) is the nation’s
lead agency in the fight to prevent new HIV infections. CDC programs
focus on basic science of HIV infection and disease progression,
monitoring the epidemic, prevention and vaccine research, putting
effective prevention tools into the hands of affected communities,
state and local prevention activities, state and local prevention
activities, and school-based and occupation prevention programs.
CDC funds numerous national, regional and community-based organizations
that specifically target racial and ethnic populations. FY 98 funding
for CDC prevention program was $634. Million, including $9.5 million
to assist national and regional minority organizations to deliver
HIV prevention programs and services to minority communities.
CARE SERVICES ISSUES
are many issues that act as barriers to accessing health care by
members of racial and ethnic communities affected by HIV. These
barriers may be social, organizational, and cultural, although they
are all interrelated. Social issues may include society’s perceptions
of and unfamiliarity with a particular racial/ethnic group affected
by HIV, which in turn presents obstacles to that group’s ability
and willingness to seek and obtain health care. Societal sexism,
racism, or homophobia may cause members of certain groups to avoid
health care. Organizational issues may include a lack of health
and support services providers available to that group, lack of
transportation, lack of financial resources, geographic location
of health care facilities and providers, and hours of operation
of a facility. Cultural issues that may affect access to services
of understanding of the health care system or mistrust of health
to share health concerns with those outside of the family structure;
to discuss issues of sexuality with family members and others,
including health care professionals.
Ryan White CARE Act Program
many minority individuals, the Federal government’s program to fund
health and support services to people infected with HIV/AIDS, the
Ryan White CARE Act program, is their only source of medical care.
This program provides health care and support services, primarily
on an outpatient basis, to people infected with HIV and to people
who have developed AIDS. A portion of that program provides training
to health care providers and other professionals about HIV and delivery
of services to people with HIV.
Ryan White program recognizes that there are many issues in the
delivery of services to racial and ethnic communities, and has implemented
many activities to respond to those issues, including researching
the issues and developing possible solutions to address them. The
Ryan White CARE program very strongly encourages all of its grantees
to be as inclusive as possible of racial and ethnic minorities and
all groups affected by HIV in the planning and development of health
care programs and systems for people infected with HIV.
Characteristics of Recipients of Ryan White CARE Act Services
on the racial/ethnic characteristics of recipients of services of
Ryan White CARE Act Title I programs (grants to metropolitan areas
with large numbers of AIDS cases) and Title II programs (grants
to all States and territories) indicate that racial and ethnic communities
are being served by these programs (see table below). These programs
ensure that services are available in ways that facilitate access
to and use by any individual infected with HIV. However, it is important
to note the program only provides services to those individuals
who know their HIV status and who make too much money to qualify
for Medicaid, but do not make enough to afford their own health
XX illustrates the demographic characteristics of clients served
by Title I and Title II of the Ryan White CARE Act program:
White CARE Acting funding in FY 1996 totaled $757,402,000; in Fiscal
Year 1997 it totaled $996,252,000; and in FY 1998 it totaled $1,150,200,000.
the overall rate of substance abuse does not differ significantly
between minority and non-minority populations, injection drug use
or sex with an injection drug user is the most prevalent route of
transmission of HIV in minority populations. Injecting drug use puts
individuals at the greatest risk of infection with HIV due to the
ease in which HIV is transmitted through the sharing of syringes.
Over one-half of new HIV infections are associated with injecting
drug use or sex with a person who injects drugs. In minority communities,
the risk of infection with HIV is highly correlated with injection
Drug Use by Race
current illicit drug users are white. There were an estimated
9.7 million whites (74 percent of all users), 1.8 million blacks
(14 percent), and 1.1 million Hispanics (8 percent) that were
illicit drug users in 1996.
rate of current illicit drug use for blacks (7.5 percent) remained
somewhat higher than for whites (6.1 percent) and Hispanics (5.2
percent) in 1996. However, among youths the rate of use is about
the same for the three groups.
of all individuals who contracted AIDS through IDU were Black,
29% were White, and 25% were Hispanic.
Drug Use in Racial/Ethnic Women
of Back women and 72% of Hispanic women have contracted AIDS through
their own IDU and/or sex with an IDU person.
Drug Use in Racial/Ethnic Men
Blacks, injecting drug use represents the largest exposure category.
For Hispanics, injecting drug use is comparable with non-IDU sexual
contact category. For Whites, the IDU category is only 17%.
Abuse Treatment and Primary Substance of Abuse
groups vary widely in the primary substance of abuse reported at
admission to substance abuse treatment. While alcohol is the most
common primary substance for most racial/ethnic groups, the rates
differ widely. Cocaine is the most common primary substance of abuse
for blacks, while heroin is the primary substance of abuse for 45%
of Puerto Ricans who entered treatment.
connection between HIV and substance abuse cannot be understated.
Of particular concern is ensuring that comprehensive health care
services are available for substance abusers so that they can get
into treatment not only for their addiction, but for any other disease
they may have (e.g., HIV, T.B., hepatitis, STDs). The lack of treatment
slots due to funding constraints in many communities often means
that someone who is ready to go into treatment may have to wait
for help until a slot becomes available.
to HIV treatment regimens
issue is that of compliance with HIV treatment regimens for substance
abusers. Compliance is essential in order for anti-HIV drugs to work.
However, if drug users are worried about their next "fix",
the likelihood of them being compliant is low. The need to ensure
that comprehensive treatment services (for both HIV and drug addiction)
is extremely important.
HIV AND STD CONNECTION
transmitted diseases (STDs) are known to facilitate the transmission
of HIV. Studies have repeatedly linked STDs with a three to five fold
increased risk for transmission of HIV. This is true for both those
with ulcerative diseases such as herpes, syphilis, and chancroid and
non-ulcerative STDs such as chlamydia, gonorrhea and trichomoniasis.
Infection with another STD can significantly increase risk of acquiring
HIV if exposed to the virus through sexual intercourse. HIV positive
individuals co-infected with a STD are more likely to transmit the
HIV virus to their uninfected partners because of greater HIV viral
load and increased shedding of the virus.
MEN AND MEN WHO HAVE SEX WITH OTHER MEN
gay minority men, and men who have sex with other men, are heavily
impacted by HIV and AIDS. Men who have sex with men account for
more than 63% of all AIDS cases in young men, aged 20 - 24 years
old. MSM account for 34% of cases in young men aged 13 - 19 years
closely related issue is men who have sex with men but who do not
self identify as gay. Often, because of societal and cultural pressures,
MSMs may be married and have children yet continue to have sexual
relationships with other men. This complicates HIV prevention efforts
given that individuals are hard to identify, hard to reach and may
not respond to traditional prevention messages aimed at openly gay
men. Thus, messages must be specifically targeted to take into account
a person’s self-identification as heterosexual despite their sexual
activity with the same gender.
of concern are minority youth that think of themselves as invincible
and thus not vulnerable to HIV infection. Special efforts must be
undertaken to address issues they experience, such as self-esteem,
questioning of their sexual orientation/sexual experimentation,
support for those who have chosen to remain abstinent, and other
peer pressures such as alcohol and drug use/experimentation/abuse.
Another concern are recent reports of that some gay youth believe
that it is inevitable that they will become HIV infected, and thus
there is no need for them to practice safer sex or not inject drugs.
issue of substance use/abuse within the gay community must also
be taken into account. Impaired decision making related to sexual
activity or sharing of needles presents special problems in HIV
prevention efforts. In order to be effective, HIV- prevention and
treatment programs must take into account the role that alcohol
and substance abuse plays in an individual’s life.
of AIDS Cases Attributed to Men Who Have Sex With Men
1991 there has been a 70% increase in AIDS incidence among women—more
than any other group or exposure category. The rise is particularly
seen in minority women. Black women are 17 times more likely to
have AIDS than non-minority women and Latinas are 6 times more likely
than non-minority women.
Black and Latina women comprise only ¼ of all women in the U.S., they
make up ¾ of all AIDS cases among women."
Black and Latina women comprise only ¼ of all women in the U.S.,
they make up ¾ of all AIDS cases among women. In adult females,
the AIDS case rate per 100,000 population for blacks was 107.2,
for Hispanics, 50.6 for American Indians/Alaska Natives, 13.6 and
for Asian/Pacific Islanders, 5.6. For Whites, the rate was 12.4
Heterosexual transmission is the most rapidly increasing transmission
category among women, especially young women. Among women reported
with AIDS in 1997, 38% were infected through unprotected heterosexual
contact with at-risk partners.
second leading cause of AIDS among women is injection drug use.
In 1997, 32% of women acquired AIDS through use of injection drugs.
A recent Centers for Disease Control and Prevention study showed
a high prevalence of AIDS among young women ages 18 - 29 who had
recently had unprotected intercourse in exchange for crack cocaine
suggest that adolescent women are becoming infected by older sexual
and needle sharing partners and is consistent with the documented
age gap between teenaged mothers and their partners. These young
women progress from HIV positive to AIDS more rapidly than average,
usually within five years of infection.
Percent AIDS Cases in Women, By Race/Ethnicity, Cumulative,
women who are at the highest risk for HIV infection face a multitude
of other problems such as poverty, substance abuse, alcoholism,
violence, unemployment and unplanned pregnancy. Other factors such
as language barriers, lack of transportation and childcare make
it difficult for women to access quality health care.
issues for women must also account for their physical differences
from men. As a woman’s immune system weakens, she may experience
gynecological problems, such as menstrual irregularities, genital
ulcers, pelvic inflammatory disease, and premature menopause. Most
AIDS treatment research has not taken into account the special needs
of women, and concern is often voiced that the medical community
does not know whether specific anti-viral drugs work as well in
women as in men.
also must be concerned about the potential for pregnancy. Studies
indicate that an HIV-positive woman has about a 25% chance of passing
HIV on to her baby. However, treatment with AZT during pregnancy
and childbirth, reduced this risk to about 8%. New research indicates
that the risk may be reduced to 1% - 3% if a woman gives birth by
Cesarean section, is treated with AZT, and does not breast-feed
AND YOUNG ADULTS
than 65% of all new HIV infections between 1994 and 1997 in youth
13 – 24 years old were in Black and Latino youth. Gay and bisexual
teenagers comprise more than half of these individuals. Youth and
young adults are especially vulnerable given their view on life
as that of invincibility. One recent survey of youth found that
87% of 12 - 24 year olds believe that they are not vulnerable to
getting HIV. Yet, the statistics indicate differently. Sexual experimentation,
drug use/experimentation, peer pressure, lack of role models, fear
of rejection, questions about sexual identity, homophobia, lack
of assertiveness, all affect a youth’s perception of risk and willingness
to heed the safer sex/no sex, no drug message.
such as runaways, throwaways, homeless or out-of-school youth, or
those who often trade sex for money or a space to stay for the night,
have unique issues which must be addressed. The first priority for
many is often money for food, shelter, or drugs Youth must be given
a reason to remain HIV-negative, to use condoms, or to go into drug
who are infected with HIV, or who are at risk for infection with
HIV, present unique challenges with respect to services for and
prevention of HIV. The HIV/AIDS statistics concerning youth are
alarming and require our immediate attention.
broad overview shows the following:
of new HIV infections occur in people under age 22; 50% of new
infections occur in people under age 25.
youth are young people of color, gay youth, and young women who
have sex with HIV positive men.
cumulative AIDS cases in youth 13 - 19 24 years old through December
1997, 34% were in men who have sex with men. In the 20 - 24 year
old age group, 63% of the cases were MSM and 12% IDU related.
females, more than 50% of AIDS cases in both the 13 - 19 and 20
- 24 year olds were through heterosexual transmission. IDU’s accounted
for 14% of cases in the 13-19 year old group, and 28% of cases
in the 20-24 year old group.
the fact that young people increasingly are affected by the HIV/AIDS
epidemic, few receive HIV testing, risk counseling, or treatment.
One reason is that young people are less likely than adults to seek
health care, except in emergency situations. Distrust of adults,
concern about confidentiality, lack of health insurance, and lack
of transportation are just some of the barriers to obtaining care.
In addition, youth generally are without the confidence, knowledge,
and skills to negotiate complex medical and social services systems
designed for adults.
are seldom designed to offer the comprehensive services required
by youth, and often, the information available to providers about
designing and implementing successful programs that reach youth
services to adolescents who are at risk for or are already infected
with HIV requires very special consideration of the issues affecting
adolescents and development of ways to address them successfully.
The Ryan White CARE Act has funded demonstration projects that address
these adolescent care issues, and we have learned much from them.
Successful programs must:
creative outreach strategies;
the immediate needs of youth;
their psychological barriers; and
the programs appropriate for youth.
of successful approaches that increase adolescents’ access to prevention
and care services are:
a variety of creative outreach strategies, including traditional
strategies (referrals from other providers, distribution of print
materials) and non-traditional strategies (visiting bars and clubs
that are frequented by gay, lesbian and bisexual youth, contacting
homeless and run-away youth at their hang-outs).
trust, which can be a long, labor-intensive process. Strategies
include using peer-based models of outreach and counseling, using
formerly street-involved adults and street-savvy youth outreach
workers, making numerous casual contacts with youth to build rapport
before attempting to link youth with services, addressing youth
concerns about confidentiality with respect to HIV testing and
disclosure of HIV status.
psychological barriers, including poor self image, magical thinking
(it won’t happen to me), hopelessness and fatalism prevalent among
programs appropriate to youth—programs should be age, developmentally,
and culturally appropriate to youth. Brochures and other outreach
materials should accommodate an individual’s reading skill. Since
youth have different risk profiles, no one program may be appropriate
for all. Specific programs for gay/bisexual young men, heterosexual
young men and women, and youth in recovery from substance abuse
may be necessary. Programs should be fun and meaningful for youth,
as this helps keep youth involved in the program.
is important to recognize that adolescents require more care than
adults do, and that this costs more. HIV positive and at risk youth
require more intensive case management and much more time than that
required by adults (e.g., driving youth to appointments, walking
youth through clinics, obtaining housing and employment, addressing
issues of homophobia and violence). We must look at creative ways
to provide these services through active collaboration among service
providers, development of linkages across communities, and sharing
of information and resources.
FARM WORKERS AND UNDOCUMENTED INDIVIDUALS
number of migrant farm workers and/or undocumented individuals,
by their very nature, is unknown. The majority of migrant and seasonal
farm workers are U.S. citizens or legal residents of the U.S. and
of Hispanic ancestry. The number of HIV-positive migrant or undocumented
workers or those with AIDS is also unknown. Language and cultural
barriers, along with a low perception of risk, hamper education
efforts in this population.
major issues arise when addressing HIV and AIDS in migrant and undocumented
movement from one location to another means that prevention, counseling/testing
and treatment programs are of the "hit and miss" nature.
The need to find work often takes precedence over treatment. Their
jobs do not offer sick leave or vacation days, and if they do
not report to work, they do not get paid and risk losing their
position to another individual.
is often limited or no health care coverage due to low wages or
working in a position which does not offer health care coverage.
Individuals who do not have access to primary care are either
not treated or must rely on the emergency room for treatment.
therapies may not be a viable option given their high cost, rigid
schedules, inability of farm workers to take the drugs while in
the field, lack of access to the drugs in camp, and the fear of
discovery of having HIV by others in camp.
law and fear of deportation prevent migrant and undocumented individuals
from seeking testing or treatment for HIV-related diseases. The
traditional mistrust of government presents added concerns for
undocumented individuals with HIV/AIDS, despite the fact that
they may need treatment for a specific symptom or to avoid an
of educational material and on-site interpreters are barriers
to effective prevention and treatment efforts. Thus, HIV infection
may not be diagnosed until much later in the disease stage, once
a person has come down with an opportunistic infection and must
many migrant settings, alcohol and substance abuse is high, thus
complicating prevention efforts
President’s FY 1999 HIV/AIDS related budget requests totaled $9.7
billion, including both mandatory (e.g., Medicaid, Medicare and
Social Security), and discretionary activities (e.g., NIH and Ryan
White), and increase of 8% over FY 1998 and an 85% increase over
the FY 1993 level of $5.2 billion. Data on expenditures based on
race/ethnicity is not systematically collected or reported by the
is an issue of special concern to racial and ethnic populations.
Given the historic lack of funding for programs specifically targeting
racial/ethnic minority populations, the infrastructure necessary
to combat HIV/AIDS at the local level does not exist at the same
level as that for the non-minority population. With more recent
efforts of directly funding minority-focused, minority-run community-based
organizations, and with the provision of technical assistance in
the areas of programmatic and organizational management, many community-based
organizations are now able to design, implement and evaluate HIV-
prevention and service programs. However, it must be noted that
many minority community-based organizations are under funded and
have limited staff, and thus are having to play "catch-up"
with their non-minority organizations counterparts.
President’s Race Initiative includes $5 million for specific HIV/AIDS
prevention related activities aimed at reducing new infections in
racial and ethnic populations. Also contained in the Initiative is
$10 million that will focus on the closely related issue of sexually
transmitted diseases. Focusing on HIV prevention and the prevention/treatment
of sexually transmitted disease is an important component of an overall
HIV prevention and treatment program. The Clinton administration has
shown its clear commitment to providing the necessary leadership and
requisite funding to address HIV/AIDS in a comprehensive manner.
1998 Federal Spending on Selected HIV/AIDS Programs
Office of National AIDS Policy
Percent of AIDS Cases Attributed to Injection
Drug Use and Men Who Have Sex with Men and Injection Drug Use, Cumulative
Through December 1997.