Raymond Rodriguez, Chicago, IL

PART iii. The changing EpidemiC

Increasing drug costs
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Increasing demand

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PRESSURE ON ADAPS

The Epidemic Continues to Grow

Today, the Ryan White CARE Act is being implemented in the context of a growing epidemic. The number of people living with HIV/AIDS in the United States has likely surpassed 900,000 and is perhaps more than 1,000,000.5

In 2000, an estimated 400,000 to 500,000 people were not receiving care that was in keeping with treatment guidelines: Between 180,000 and 280,000 did not know that they were HIV positive, and an additional 220,000 knew their serostatus but for a host of reasons, including treatment side effects, poverty, mental illness, and the effects of HIV/AIDS stigma, were not receiving care regularly if at all.5 Four years have passed since those estimates were made, and during that time CARE Act providers—and those supported by other funding streams—have intensified outreach initiatives to reach those individuals. Many have been reached, but hundreds of thousands still remain out of care. The result is that, as CARE Act providers strive to respond to health care inflation and cost constraints so that they can serve their current clients, they also must position themselves to serve individuals not yet in care.

Stigma

The effects of HIV/AIDS stigma exceed what most of us have the capacity to understand. Stigma is associated with delays in HIV testing, delays in accessing HIV care, and delays in disclosing serostatus to friends and loved ones. In 1999—20 years after the onset of AIDS in the United States—one-fourth of people included in a telephone survey said they felt uncomfortable having contact with people with AIDS. Nearly one-third said they would avoid shopping at a neighborhood grocery known to be owned by a person with AIDS—a fact that raises a serious question: how many employers feel comfortable offering a job to someone living with HIV disease?8

HIV is not the only challenge faced by many people living with HIV disease

A large number of HIV-infected people are dealing with much more than HIV disease. As CARE Act data reveal (see charts, page 17) approximately one-half of current clients live at or below the Federal Poverty Level and fewer than 1 in 10 have any private health insurance. CARE Act clients commonly live in more dire circumstances than do other people living with HIV disease, and HIV-infected people in general are more likely than the noninfected population to be economically disadvantaged.9 It is clear that a significant portion of individuals who do not know their serostatus and are not in care will have to rely on public resources—including those of CARE Act –funded providers—for services once they are enrolled in care.

In addition to challenges related to poverty and lack of adequate health insurance, people living with HIV disease commonly face other problems. Many are related to health.

• Drug use is directly related to the AIDS epidemic. Injection drug use accounted for about 24 percent of new AIDS cases and 25.7 percent of people living with AIDS in 2002.4,10 Use of injected and noninjected substances, such as alcohol; heroin; and “club” drugs like cocaine, MDMA (“ecstasy”), ketamine (“special K”), and crystal methamphetamine (“tina,” “crystal,” “krank,” “tweak,” “ice”), are related to HIV transmission, primary and secondary HIV prevention, adherence to treatment, and disease progression. Data on usage rates are scarce, but the rates are believed to be high among some subpopulations.
• AIDS-related dementia develops in as many as one-quarter of people living with AIDS.11 In addition, in the United States and Europe, severe mental illness occurs in 20 to 50 percent of people living with HIV disease.12 Illnesses include major depression; anxiety, panic disorder, or posttraumatic stress disorder; impulsivity or personality disorder; and drug-related disorders and psychoses. The overlap between substance abuse and mental illness is significant.
• Homelessness, poor housing conditions, and risk for homelessness occur at extraordinary rates among some HIV-positive populations. The U.S. Department of Housing and Urban Development cites estimates that one-third to one-half of all people living with AIDS “are either homeless or in imminent danger of losing their homes.”13 Rapidly rising housing costs in many major cities are increasing the housing crisis among some HIV-positive subpopulations.
• Many other problems, such as tuberculosis, hepatitis C, oral health problems, and poor nutrition threaten people living with HIV disease.14,15,16,17,18 Wherever they occur, they pose serious challenges for patients and for providers with inadequate resources. Because of comorbidities, HIV infection cannot be treated in isolation. Instead, a comprehensive approach is required.

Carlos Cunha, New York, NY

New HIV Infections: What We Know

HIV incidence is projected at or slightly above 40,000 new infections every year.5

But data on the actual number of new infections and the demographics of those infected are limited. Only 30 States have name-based HIV infection reporting, and they are not representative of the national epidemic. Moreover, many HIV infections across the country have never been diagnosed. Much more needs to be known about trends in HIV infection if the care and prevention systems are to reach those not in care and respond with increasing effectiveness to the needs of the underserved.

Is AIDS Incidence Rising?

For the first time in more than a decade, the number of new reported AIDS cases increased in 2002. The total increase was small—just 2.2 percent—and in real terms, the number of cases reported in 2002 was less than half that reported in 1993.10

Trends in AIDS10

The South accounted for 44 percent of new cases in 2002.

The heterosexual transmission rate increased by 19 percent from 1999 to 2002.

New cases related to the MSM expo­sure category rose in 2001 and 2002.

But the increase raises many questions: Does it reflect a new trend? Did it occur at least in part because of anomalies in reporting? Do the data reflect diminishing benefit from antiretroviral therapy? It is far too early to answer those questions, but we know that the increase occurred across multiple demographic markers—among men and women, among all races and ethnicities except Hispanics, and among all age groups except children under 13 years of age and adults 25 to 34. The rise was also geographically widespread, affecting every area of the country except the Northeast. The South is bearing a disproportionate burden, accounting for 44 percent of all reported cases in 2002.10

Particularly disturbing in 2002 was the continued increase in cases related to heterosexual contact. Since 1999, the proportion of reported AIDS cases attributable to heterosexual contact has risen 19.4 percent—faster than any other category.10

Also alarming is the number of AIDS cases related to the men who have sex with men (MSM) exposure category, which rose 4.0 percent in 2002 over 2001.10 MSM accounted for 40.2 percent of all reported cases in 2002, a proportion roughly equal to that in 1998. This rise in AIDS incidence among MSM combines with reports of high HIV prevalence among subpopulations of MSM to raise concerns of resurgence among the population hardest hit by the epidemic in America.

Estimated AIDS Incidence
United States, 1998–200210

The growing burden of AIDS among women was readily apparent in AIDS surveillance data from more than a decade ago, and that burden continues to increase today. AIDS incidence among females has increased in 3 of the past 5 years, rising 6.5 percent since 1998.10 Something that has not changed is the extraordinary proportion of female cases among racial and ethnic minority women—65.2 percent among African Americans and 16.6 percent among Hispanics in 2002.19

There was some good news in 2002, in that injection drug use (IDU) continued to play a diminishing role in AIDS incidence. Accounting for 24 percent of new cases in 2002, reported AIDS cases for which HIV exposure was IDU declined 17 percent from 1998 to 2002.10

AIDS mortality continues to fall

In 2002, 16,371 people died from AIDS in the United States, the lowest number since 1993.7

Between 1998 and 2002, the decline in AIDS mortality was 13.9 percent.7 Deaths decreased much more among some subpopulations.

Reflecting pronounced reductions in perinatal transmission over the past decade, the most significant decline in AIDSmortality during this period was among children under age 13 (68.3 percent). People ages 25 to 34 also experienced a substantial decrease (47.9 percent), largely as a result of antiretroviral therapy.7

AIDS Deaths Among U.S. Adults and Adolescents, 1998–20027

There was a decidedly downward trend in AIDS mortality among men, which decreased by approximately 17.9 percent from 1998 to 2002—most significantly in cases associated with MSM (23.9 percent). Trends among women are much less discernable: Increasing in 1999, falling in 2000, and then rising in 2001, AIDS mortality in women fell in 2002, but by only 2.4 percent—less than one-third the rate of decline among men (7.1 percent). About 1 in 4 (25.8 percent) of all deaths from AIDS in 2002 were among women.7

AIDS mortality continues to rise among some subpopulations. From 1998 to 2002, increases were experienced among people over age 45 (13.2 percent) and among people for whom the HIV exposure category was heterosexual contact (5.3 percent).7 Those changes reflect the aging of the HIV-positive population in America since the introduction of antiretroviral therapy and the steady increase in AIDS incidence related to heterosexual contact.

People living with AIDS today

By the end of 2002, estimates of the number of people living with AIDS in the United States had risen to 384,906. This number represents more than one-third of all those estimated to be living with HIV disease in the United States, and it exhibits a 33-percent increase in AIDS prevalence since 1998.4

Estimated U.S. Males Living With AIDS4
2002, by HIV Exposure Category (N = 298,248)

Estimated U.S. females Living With AIDS4
2002, by HIV Exposure Category (N = 82,764)

A comparison of data from 1998 to 2002 reveals that AIDS demographics continue to change. In 2002, people living with AIDS were

• more likely to be female (19.9 percent of all cases in 1998 versus 21.5 percent in 2002);
• less likely to be children under age 13 (1.1 percent in 1998 compared with 0.6 percent in 2002); and
• much more likely to be age 45 or older (29.9 percent in 1998 compared with 41.3 percent in 2002).4

But the most dramatic statistic is not about age or gender or even change. It is the one about the continuing toll of HIV disease in the United States among racial and ethnic minorities.

AIDS among Racial and Ethnic Minorities

AIDS Incidence Among Adolescents and Adults, 2002, by Race/Ethnicity10

At the end of 2002, more than 4 in 10 people living with AIDS in the United States were African American and approximately 2 in 10 were Hispanic. Almost two-thirds (63.4 percent) were racial or ethnic minorities, up from 60.8 percent in 1998.4

Not only do minorities account for an increasing proportion of people living with AIDS, they represent an ever-growing number of people dying from it. More than 7 in 10 deaths from AIDS in the United States (72.2 percent) during 2002 occurred in racial or ethnic minorities—52.3 percent of deaths were among African Americans and 18.7 percent were among Hispanics.7

Minorities account for a growing number of reported AIDS cases, with increases occurring in African Americans, Asian/Pacific Islanders (A/PI), and American Indian/Alaska Natives (AI/AN) from 1998 to 2002.10 In 2002, the number of cases per 100,000 adult and adolescent African Americans (AIDS rate) was 76.4—approximately 10 times that for whites and three times that for Hispanics.

There is no good news to report about the disproportionate burden of AIDS suffered by racial and ethnic minority women. African Americans accounted for 65.2 percent of female cases reported in 2002; Hispanics accounted for another 16.6 percent.19

Among males, in 2002, 65.4 percent of reported AIDS cases were among racial and ethnic minorities, 44.1 percent among African Americans and 19.6 percent among Hispanics.20