Past. . .

While researching his heart-wrenching and riveting book about the early years of the HIV/AIDS epidemic, And The Band Played On, Randy Shilts uncovered signs of a strange new disease emerging in the late 1970s. But 1981 is usually considered the year that the disease now known as Acquired Immune Deficiency Syndrome first emerged in the United States. Hospitals in San Francisco, New York, and—as discussed in the June 5, 1981 issue of MMWR—in Los Angeles began to see unexplained cases of the very rare pneumonia, Pneumocystis carinii (PCP). The patients were young men. They were sick when they came to the hospital, and most died within a matter of weeks. By 1982, researchers had determined that the cause was an infectious agent, later given the name human immunodeficiency virus.

And Present . . .

The Centers for Disease Control and Prevention (CDC) is responsible for collecting disease surveillance data in the United States. Complete estimates for 2005 were being compiled as this report went to press, but at the end of 2004, the CDC estimated that 529,113 people in the United States had died from AIDS.²⁴ Most were in the prime of their lives when they died. Many had never reached it.

The CDC also estimated that there were 42,514 new AIDS cases in 2004 alone—this, in a country where many believe that, because of HAART, people don’t progress to AIDS, and that those who do don’t die.²⁵ As clearly shown in Table 3, they are mistaken.

In 2004, 15,798 people died from AIDS in the United States.²⁶ Approximately one in four were women, and three in four were minorities.

AIDS Among Minorities

Racial and ethnic minorities living in the United States accounted for 71 percent of new AIDS cases and 72 percent of deaths from AIDS in 2004, though they accounted for an estimated 38.6 percent of the total U.S. population.^27,28,29

The AIDS burden among African-Americans is nothing less than catastrophic. In 2002, HIV/AIDS was the second leading cause of death for all African-Americans aged 35–44 and HIV/AIDS was the first leading cause of death for African-American women aged 25–34.³⁰ African-Americans’ share of the U.S. AIDS burden has never been more disproportionate to their representation in the total population than it is now. Because of barriers to care ranging from being unaware of one’s HIV status to a lack of trust of the medical system, some African-Americans living with HIV disease enter care very late in the progression of their HIV disease.

Hispanics, among whom the burden of AIDS is also very heavy, face many of the same barriers to care experienced by African-Americans and other racial and ethnic minorities.³¹Because they have higher rates of poverty, they are more likely to have inadequate health insurance.³² Without health insurance, they have poor access to primary health care and the disease prevention services that can prevent HIV disease. Moreover, some Hispanics living in the United States are almost entirely unfamiliar with how the medical system in this country works.

The burden of AIDS among other minority groups for which surveillance data are gathered (Asian/Pacific Islander and American Indian/Alaska Native) is much lower than for African-Americans and Hispanics. But, these populations often encounter significant barriers to care just the same. Some are related to stigma. Some are related to lack of health insurance and poverty, just as they are for almost all CARE Act clients. And some are related to culture.

For example, Asian and Pacific Islander (A/PI) communities in the United States reflect an estimated 40 cultures with more than 100 languages and dialects.³³ American Indians/Alaska Natives (AI/AN), like A/PIs, are an incredibly diverse minority group consisting of hundreds of different tribes and cultures.

In fact, the diversity among minorities—and among all people living with HIV/AIDS—sometimes is lost in the flood of numbers and data that are used to try to nail down a constantly moving, always complex, and often hidden AIDS epidemic in the United States. But the epidemic is a significant factor for people who don’t always fit into neat packages and categories. There are people from the Caribbean, for example, many of whom identify as Caribbean American rather than as African-American and who come from unique, and diverse, cultures. There are people living along, and traveling through, the U.S.-Mexico Border region who face their own set of barriers and challenges. There are significant populations of transient individuals, such as those who travel on the “Air Bridge” between the Northeast United States and Puerto Rico, and of migrant farm workers, who begin the year working in the southernmost part of the United States and who fan out across the country as farming weather returns to the north. There are also significant numbers of communities where large populations of immigrants from sub-Saharan Africa and other regions have resettled. A large number of those who are HIV-positive will eventually depend on CARE Act-funded providers for some portion of their care. And these providers realize that they must stand ready to act.

Women, Children, and Youth

Women. Estimated new AIDS cases per year have not decreased as much among females as among males. Consequently, women continue to account for a growing proportion of estimated U.S. AIDS cases—27 percent in 2004.³⁴ Minority women accounted for 83 percent of these cases.³⁵ (See HRSA CAREAction, “AIDS and Women,” at ftp.hrsa.gov/hab/december2004.pdf.)

In addition to facing the challenges of living with HIV disease and adhering to treatment, women who are living with HIV often are primary caregivers for children and aging parents. There are over 14 million single-parent households run by women, over 3 times greater than the number of single-parent households run by men.

Not only are more women enduring the burden of caring for children and parents on their own but they are doing so with more limited financial means than men in similar situations: Single mothers made approximately $15,097 less annually in 2004 than single fathers.³⁶

Children. Today, most children with HIV are born to women who receive inadequate prenatal care. “With proper maternal treatment and perinatal prophylaxis, the risk of passing HIV from mother to child is less than 1 percent, compared with 28 percent without treatment.”³⁷ Access to care for pregnant women is, therefore, critical to reducing HIV infections in infants; it also reflects a critical success for CARE Act providers, whose work has resulted in extraordinary declines in perinatal transmission among the underserved in the past 10 years. Children living with HIV/AIDS require access to care and treatment provided by specialists—and treatment must reflect that children are not merely small adults. They face unique challenges, especially those related to emotional development and well-being. Moreover, most children living with HIV/AIDS were born into impoverished families. The most successful approaches to caring for these children reflects this reality—and provides access to care for the entire family. (See Pediatric HIV/AIDS in the United States, ftp://ftp.hrsa.gov/ hab/pediatric_hivaids.pdf.)

Youth. An estimated one-fourth of all HIV infections occur in people age 21 and younger—a segment of the population that is among the most medically underserved.³⁸ Experts estimate that only 11 percent of HIV-positive youth in the United States receive adequate health care.³⁹

Most HIV-infected youth are asymptomatic, do not know they are infected, and are not enrolled in treatment.⁴⁰ Thus, while some young women are diagnosed in the context of gynecological care, most teenagers are left unaware of their status—and the virus’s risks to their health and to that of those with whom they have intimate relationships.

Like children, teenagers and young adults in treatment face their own set of challenges in living with HIV/AIDS. Those diagnosed as infants have never known life without HIV/AIDS. As they grow up, they must factor the disease into the process of building the kinds of emotional and physical relationships associated with adolescence and adulthood. And they must work with their providers to transition from a pediatrics to an adult care environment.

Also, during a period in life often associated with a certain amount of “pushing the limits” and “testing the waters,” teenagers on HAART must continue rigorous adherence. In short, they have to grow up early—and to do so, many rely on the treatment and support provided by experienced CARE Act-funded providers serving this population. (See Youth and HIV/AIDS, ftp://ftp.hrsa.gov/hab/youth_ and_hivaids.pdf.)