Widely 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.

However, 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).

As 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).

The 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 the epidemic.

One 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.

In 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.

Finding solutions to these difficult challenges will be difficult. New partnerships, new energy, new commitments will all be necessary if we are to stem this epidemic.

It 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.

Sandra L. Thurman
Director
Office of National AIDS Policy

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Through 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.

Data 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 Natives.

It 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.

For black, Hispanic and American Indian females, more than 40% of cases are IDU related, but only 17% of such cases in Asian and Pacific Islander females.

The 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 MSM.

The 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

• Most new AIDS cases are among Blacks and Hispanics (62%)
• More than ¾ of AIDS cases in women are in racial and ethnic populations
• Most pediatric AIDS cases are in racial/ethnic populations
• Most injection drug-related AIDS cases are in racial/ethnic minority populations (80% in men and 78% in women)
• More than half of AIDS cases among teen men and ¾ among teen women are from racial or ethnic population

For 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.

Prevention 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.

Thus, 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.

This 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 constituencies.

The 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 communities.

The 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.

There 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 include:

• language;
• isolation;
• lack of understanding of the health care system or mistrust of health care providers
• unwillingness to share health concerns with those outside of the family structure; and
• unwillingness to discuss issues of sexuality with family members and others, including health care professionals.

For 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.

The 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.

Data 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 insurance.

Table XX illustrates the demographic characteristics of clients served by Title I and Title II of the Ryan White CARE Act program:

Ryan 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.

• Most 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.
• The 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.
• 46% of all individuals who contracted AIDS through IDU were Black, 29% were White, and 25% were Hispanic.

• 68% of Back women and 72% of Hispanic women have contracted AIDS through their own IDU and/or sex with an IDU person.

• For 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%.

Racial/ethnic 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.

The 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.

GAY MEN AND MEN WHO HAVE SEX WITH OTHER MEN

Self-identified 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 old.

A 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.

Also 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.

The 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.

Chart 4

Percent of AIDS Cases Attributed to Men Who Have Sex With Men

Since 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.

While 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 per 100,000.

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.

The 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 or money.

Findings 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.

Minority 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.

Treatment 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.

Women 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 her newborn.

More 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.

Youths 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 treatment.

Adolescents 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.

A broad overview shows the following:

• 25% of new HIV infections occur in people under age 22; 50% of new infections occur in people under age 25.
• Vulnerable youth are young people of color, gay youth, and young women who have sex with HIV positive men.
• Of 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.
• In 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.

Despite 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.

Programs 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 is meager.

Providing 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:

• apply creative outreach strategies;
• establish trust;
• address the immediate needs of youth;
• address their psychological barriers; and
• make the programs appropriate for youth.

Examples of successful approaches that increase adolescents' access to prevention and care services are:

• Applying 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).
• Establishing 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.
• Addressing psychological barriers, including poor self image, magical thinking (it won't happen to me), hopelessness and fatalism prevalent among disenfranchised youth.
• Making 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.

It 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.

The 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.

Several major issues arise when addressing HIV and AIDS in migrant and undocumented communities:

• Rapid 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.
• There 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.
• Combination 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.
• Immigration 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 opportunistic infection.
• Lack 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 be hospitalized.
• In many migrant settings, alcohol and substance abuse is high, thus complicating prevention efforts

The 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 Federal government.

Funding 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.

Table 1

FY 1998 Federal Spending on Selected HIV/AIDS Programs

($ millions)

Source: Office of National AIDS Policy