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OCR for page 38
1
The AIDS Epidemic in the Second Decade
In its first report, the Committee on AIDS Research and the Social, Be-
havioral, and Statistical Sciences reviewed what was known about the
distribution of cases of acquired immune deficiency syndrome (AIDS) in
the United States and the behaviors that transmit infection by the human
immunodeficiency virus (HIV). In addition, the committee looked at ra-
tional strategies for preventing further spread of infection. Since issuing
that report, the committee has continued to monitor the progression of
the epidemic and the nation's response to what is now clearly seen as
an evolving and enduring health problem. This report identifies several
important changes that point toward new and developing issues to be
addressed during the second decade of the epidemic, as well as contin-
uing problems from the first decade that compel the nation's sustained
attention.
AIDS surveillance data indicate gradual changes in the loci of the
epidemic in the U.S. population and the emergence of either new popula-
tions at risk or segments within already at-nsk populations that appear to
be at higher risk than was previously thought. Whereas AIDS case data
provide a sense of the scope and nature of the current problem, however,
data on HIV infection portend the future of the epidemic in the second
decade. The future is likely to bring other changes as well, including
decreased morbidity associated with HIV infection as new treatments
become available. This change in the character of AIDS, with the be-
ginnings of a shift away from an emphasis on the acuteness of infection
toward a view of AIDS as a long-term illness, will have important impli-
cations for treatment and care and for the design of intervention strategies
to facilitate behavioral change, still the only available means to prevent
38
OCR for page 39
STATE OF THE EPIDEMIC ~ 39
the spread of infection. This report considers the changing face of the
epidemic and highlights recent data and research on several groups or
populations whose risk for HIV transmission has emerged more clearly
or changed over the past decade. It also presents an update on the im-
plementation of prevention approaches discussed in the committee's first
report and offers recommendations on directions for the future.
INTRODUCTION
In its earlier report, the committee noted that the AIDS epidemic is a
social as well as a biomedical phenomenon. From a biomedical perspec-
tive, AIDS is a disease caused by a virus, HIV-l, that is transmitted by
anal or vaginal intercourse, by exposure to contaminated blood (either
through shared injection equipment associated with intravenous drug use
or transfusion), and from mother to fetus. Once it is acquired, HIV
infection appears to persist for life. The AIDS virus destroys subpopu-
lations of white blood cells that are crucial to normal functioning of the
immune system. As the immune system deteriorates, infected individuals
are no longer able to ward off infections, and some develop unusual
cancers and other conditions that appear rarely among individuals with
uncompromised immune functioning.) A sizable proportion of the people
who were infected have, after variable periods of time, progressed to
severe disease and death. At present, there is no cure for AIDS and no
vaccine to prevent infection. In fact, the only means available to prevent
further spread of the epidemic are strategies to alter the behaviors that
transmit the virus. From a social perspective, AIDS is, for the most
part, a preventable disease that is inextricably rooted in the behaviors
that transmit HIV. Halting the progression of the epidemic will require
a better understanding of the distribution of risk-associated behaviors,
the social settings in which they are enacted, and the mechanisms that
facilitate change in these behaviors. Like other epidemics in the past,
AIDS will leave its mark on many aspects of the societies in which it be-
comes prevalent.2 In the United States, the primary target of the disease
is the nation's most productive population 20- to 40-year-old adults.
As discussed below, however, the epidemic is moving in ever-widening
circles to reach more people and geographic areas across the country.
~ For more information on the medical and biological aspects of AIDS and HIV infection, see Con-
fronting AIDS: Directions for Public Health, Health Care, and Research, Washington, D.C.: National
Academy Press, 1986; and Confronting AIDS: Update 1988, Washington, D.C.: National Academy
Press, 1988.
2The committee's Panel on Monitoring the Social Impact of the AIDS Epidemic is currently exam-
ining certain social consequences of the epidemic and will be preparing recommendations on specific
methods to monitor these effects. The report is expected to be published in 1991.
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40 ~ AIDS: THE SECOND DECADE
In this country, gay men still bear the burden of most of the illness re-
lated to AIDS. But as the epidemic progresses and the number of persons
who are at risk increases, changes in disease prevalence are becoming
apparent. For example, extensive studies of gay men conducted in urban
epicenters of the epidemic over a period of several years have consistently
shown lower incidence rates of HIV infection, but this downward trend
in new infections is not uniform across the country. Moreover, young
gay men report less behavioral change to prevent infection than has been
reported among older gay men, a phenomenon that leaves adolescents
and young adults who engage in male-male sex at potentially increased
risk. Shifts in membership in the population of men who have sex with
men may also produce changes in incidence as individuals enter or leave
this group. Thus, the risk of HIV infection among day men continues to
be an important concern.
Other populations are also feeling the effects of the disease. Increas-
ingly, AIDS has become a problem of intravenous (IV) drug users and
heterosexuals. Indeed, the proportion of AIDS cases in the United States
attributable to heterosexual contact is growing, and a significant fraction
of these cases report contact with a drug user. The rise in reported AIDS
cases among females especially minority women—occasions particular
concern. As more women are infected, questions concerning the horizon-
tal spread of the virus (to sexual and drug use partners) and its vertical
transmission (from an infected mother to her unborn infant) have become
prominent in national discussions on AIDS. In this chapter, the com-
mittee presents data on AIDS and HIV infection among women as an
example of an emerging problem that embraces a diverse subpopulation
and that is likely to require new strategies for reaching the infected and
for facilitating change in risky behaviors.
Other epidemiological patterns show increasing geographic diffusion
of the virus. Research in the first decade of the epidemic showed pockets
of high seroprevalence in such cities as New York, Newark, San Fran-
cisco, and Miami for a variety of populations. More recent data show
increased numbers of AIDS cases in He central region of the country,
malting the epidemic less a bicoastal phenomenon and more a prob-
lem that may soon directly touch more and more individuals throughout
this society. Data from U.S. military applicants support this finding of
increasing geographic diffusion of HIV, showing increased rates of sero-
prevalence among black and white applicants from nonepidemic regions
of the country.3 Yet even though some patterns have changed, others
Significant increases for the past 24 months are reported in California, Florida, Illinois, Ohio, and
Texas (Gardner et al., 1989).
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STATE OF THE EPIDEMIC ~ 41
have endured. One pattern that has remained dauntingly constant is the
disproportionate magnitude of HIV infection and AIDS among minority
men and women, who are overrepresented in every transmission category.
Changes are also being seen in the patterns of behavior that transmit
the AIDS virus. Many gay men with AIDS acquired HIV infection
through unprotected sexual contact. In addition, since the earliest days
of the epidemic it has been clear that sharing injection equipment posed
a risk for the acquisition and spread of HIV infection. Today, there is
growing appreciation of other factors that may influence risk, including
the role in risk taking played by drugs such as alcohol. Indeed, the use of
noninfected drugs, such as crack and alcohol, has been linked with both
high-nsk sexual behavior and HIV infection in a variety of populations.
Another potential risk comes from recent increases in the use of drugs
such as opiates and cocaine, which in many areas are taken primarily
through smoking. These drugs offer the possibility of wider spread of
HIV infection if the route of their administration should shift to injection.
Getting ahead of the epidemic requires foresight to prevent infection
in populations and regions that currently have a low prevalence of AIDS
and HIV infection. Such opportunities should not be overlooked, for,
once lost, they cannot be recaptured. The third chapter of this report
considers the scope of the AIDS problem among adolescents. In it, the
committee notes opportunities for intervention with this group and the
characteristics of this population that put adolescents at risk and that
require consideration in the design of intervention strategies.
Keeping pace with the epidemic requires perseverance an enduring,
long-term commitment to surveillance, research, and improved interven-
tion. Short-term approaches that result in one study, one report, one
intervention will not suffice. The type of commitment required is one
that includes a range of strategies and techniques, behavioral as well
as biomedical. The response of the U.S. blood supply system to the
threat of AIDS, which is discussed in Chapter 5, offers an example of
such a commitment. The blood supply system has combined biomed-
ical techniques (e.g., HIV blood screening) and behavioral approaches
(e.g., self-exclusion procedures for high-risk donors, training programs
for physicians to alter transfusion-related practices) to reduce dramati-
cally the risk of ~ansfusion-related transmission and the number of cases
associated with exposure to contaminated blood products. Yet despite
the success these reductions represent, problems remain. Although the
current prevalence of HIV infection in the general population is believed
to be Tow, as the virus spreads and more people become infected, some
parts of the country may find that the pool of uninfected, "safe," and
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42 ~ AIDS: THE SECOND DECADE
willing blood donors has shrunk to a point that could compromise the
adequacy of the blood supply. The second decade of the epidemic thus
brings continuing as well as new challenges in managing the effects of
HIV infection and preventing its further spread.
In its first report, the committee commented on the need for sys-
tematic improvement of intervention strategies to facilitate change in the
behaviors known to transmit HIV. It noted in particular that the interven-
tion efforts described in that report had not resulted in data that offered
a clear sense of which strategies worked best for specific subpopula-
tions. The paucity of planned variations of intervention strategies and
of information garnered through rigorous outcome evaluation that was
cited by the committee has not been remedied. The gap is particularly
problematic for innovative programs that have targeted groups such as {V
drug users, in which infection has been shown to spread at an alarmingly
fast rate in the absence of effective intervention efforts and in which
potentially efficacious but politically sensitive efforts have come under
attack. A year ago the committee recommended well-designed, carefully
evaluated pilot tests of sterile needle exchange programs to ascertain the
effectiveness of this strategy in preventing further infection among IV
drug users. Although several programs were initiated, there are now
crippling restrictions on the use of federal funds to support and evaluate
these activities.4
This chapter relies extensively on counts of diagnosed AIDS cases
reported to the Centers for Disease Control (CDC). In its last report,
the committee noted some of the pitfalls that cause undercounting or
misclassification of AIDS cases and deaths (Turner, Miller, and Moses,
1989:32-33~.5 It recommended that both vigilant quality control and spe-
cial methodological studies be undertaken to improve our understanding
of the errors and biases that affect the reporting of AIDS cases and
deaths. The committee finds Hat the need for such methodological work
continues, and it commends the Public Health Service for its plan to give
pnonty to the funding of such research (PHS, 1988; CDC, 19891. As we
embark on a second decade of understanding and coping with the AIDS
epidemic, these efforts will provide needed attention to the quality of this
key data system.
More than 115,000 cases of AIDS have been reported in the United
4See Public Law 101-166 [H.R. 3566], Title General Provisions, Section 520. Depar~nents of La-
bor, Health and Human Services, and Education and related agencies appropriations, 1990. November
21, 1989. Washington, D.C.
50ther reports have also looked at completeness of reporting of AIDS cases. See, for example, the
estimates of Conway and colleagues (1989) and Modesitt, Hlllman, and Fleming (1990).
OCR for page 43
STATE OF THE EPIDEMIC ~ 43
States, and more than half of the people reflected by this statistic have
died. Moreover, AIDS has become the leading cause of death for 30-
to 50-year-old males and 20- to 40-year-old females in New York City
(New York State Department of Health, 19891. Despite advances in the
medical treatment of AIDS and other sequellae of HIV infection,6 it is
likely that HIV and AIDS will remain significant threats to individual
and public health for the foreseeable future. The persistence of risk in the
environment and the potential for relapse among those who have taken
protective action mean that, as we enter the 1990s and the epidemic's
second decade, it is important to reaffirm the nation's commitment to
preventing further spread of infection. To be more successful in future
prevention endeavors than we have been in the past, we must commit
talent and resources to the rigorous outcome evaluation of well-designed
interventions while developing new approaches based on current under-
standing of the evolutionary and persistent aspects of the problem. The
task of devising intervention strategies to fulfill this commitment rests on
obtaining sound information about the populations at risk and the behav-
iors transmitting the virus to guide program planners and policy makers.
The section that follows discusses the current profile of the disease in the
United States on the eve of the epidemic's second decade.
THE CHANGING EPIDEMIOLOGY OF
AIDS IN THE UNITED STATES
As of December 1989, the CDC reported 117,781 cases of AIDS in the
United States.7 Of the adult and adolescent cases, a significant majority
(70,093) are attributed to male homosexual or bisexual contact, and an
additional 8,117 are ascribed to bow homosexual contact and rv drug
use (CDC, 1990a). Of all men with AIDS who report same-gender
sexual contact, more than one-quarter (27 percent) are black or I-atino~
(CDC, 1990a); moreover, homosexual contact is the predominant AIDS
risk category among black and Latino males, accounting for 45 and 47
percent of cases, respectively (CDC, 1990a).
6GaiL Rosenberg, and Goedert (1990), for example, recently presented evidence suggesting that pro-
phylactic use of zidovudine among seropositive homosexual and bisexual men (particularly in New
York City, San Francisco, and Los Angeles) may be responsible for the lower than expected incidence
of AIDS cases reported in this population since the middle of 1987.
7 although the degree of underreporting of AIDS cases is not known with any certainty, recent studies
have judged reporting to be between 83 and 100 percent complete (Chamberland et al., 1985; Hardy
et al., 1987; Lafferty et al., 1988). A recent survey of hospital discharge billing records in South Car-
olina, however, found that only 59.5 percent of cases meeting CDC diagnostic criteria were reported;
underreporting was significantly worse among black patients than among whites (Conway et al., 1989).
8In this report the teIms Latino and Latina are used interchangeably with Hispanic.
OCR for page 44
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OCR for page 45
STATE OF THE EPIDEMIC ~ 45
Data from the Multicenter AIDS Cohort Studies (MACS) and the
San Francisco Men's Health Study suggest that incidence rates among
gay and bisexual men have stabilized (Winkelstein et al., 1987, 1988),
and there is some evidence that the number of new cases of AIDS in
this population appears to be leveling off in New York City and Los
Angeles (Berkelman et al., 19891. Indeed, the proportion of all AIDS
cases attributed to male homosexual and bisexual contact has dropped
from 64.9 percent in 1981 to 55.3 percent in 1989.9 At the same time, the
proportions of cases attributable to heterosexual contact and to IV drug
use have grown. In 1981 cases attributable to heterosexual transmission
and {V drug use constituted 0.5 and 11.0 percent, respectively, of all
reported cases; by 1989 these rates had increased to 5.0 and 23.2 percent
(Table 1-1~.
Among IV drug users, after several years of progressively worsening
infection statistics, there is now evidence that HIV seroprevalence has
stabilized in some areas, such as New York City (Des Jarlais et al., 1989;
Stoneburner et al., 1990), San Francisco (Moss et al., 1989), Detroit
(Ognjan et al., 1989), Amsterdam (van Haastrecht, van den Hoek, and
Coutinho, 1989), and Stockholm (Olin and Kall, 19891.~° However, this
stabilization reflects lower rates of new cases of HIV infection within
a dynamic population and should not be confused with elimination of
viral transmission. In fact, the evidence of stabilization in some regions
is offset by data on the recent, very rapid spread of the disease in other
areas. The proportion of cases attributed to drug use is increasing in
Louisiana (Atkinson et al., 1989) and Maryland (Horman and Hamidi,
1989), as well as throughout cities in the northeast region of the United
States (see Figure 1-11. The population of IV Hug users is mobile
and quite capable of carrying the virus from one geographic area to
another (Comerford et al., 1989, McCoy, Chitwood, and Page, 19891.
Such mobility is one factor that can contribute to the possibility of rapid
rises in seroprevalence rates in venous parts of the country. There is
some evidence that homosexual and bisexual IV drug users may play a
role in introducing HIV infection to other IV drug users in areas with
9Decreasing proportions, however' do not indicate decreasing numbers of cases. This smaller propor-
tion of an ever-increasing whole still continues lo result in increasing morbidity.
10For some groups at highest risk for HIV infection, stable rates may signify that all vulnerable indi-
viduals are already infected, a phenomenon known as saturation. This phenomenon does not appear
to explain stable rates in New York City, however, where approximately 50 percent of IV drug users
are estimated to be infected. If saturation had occurred, one would expect to see higher seroprevalence
rates. For example, approximately 90 percent of IV drug users in New York City have been infected
with hepatitis, a virus that is transmitted in the same manner as HIV and appears to have reached
saturation in this population.
OCR for page 46
46 1 AIDS: THE SECOND DECADE
70 _
60 __
~ 50
an
an
C]
o
it
G
ILL
40
30
20' it
10
I- Homosexual-
· Bisexual
-
IV Drug Use
O 1 1 1 1 1 1 1
1982 1983 1984 1985 1986 1987 19~ 1989
YEAR
FIGURE 1-1 Percentages of reported AIDS cases among men (aged 13 and older) in northeastern
cities that have been attributed to homosexual contact or IV drug use, 1982-1989. (Cases
reported as both IV drug use and homosexual/bisexual contact are not shown.) NOTE: Cities in
the Northeast region include the OMB Metropolitan Statistical Areas (or New England County
Metropolitan Areas) of Bergen-Passaic, N.J.; Buffalo, N.Y.; Boston, Mass.; Hartford, Conn.;
Nassau-Suffolk, N.J.; New York City; and Newark, N.J. SOURCE: Tabulated from CDC's AIDS
Public Infonnation Data Set for AIDS cases reported through December 31, 1989.
low prevalences of HIV infection (Battjes, Pickens, and Amsel, 1989).
Although the distribution of cases in the IV drug-using population has
shown considerable variation, one constant remains: the burden of AIDS
related to IV drug use falls most heavily on minorities (Selik and Petersen,
19891. Nearly half (47.6 percent) of all males reporting IV drug use as
their only risk factor for AIDS are black, and 32 percent are Latinos
(CDC, 1990a).
Addressing the problem of IV drug use in relation to AIDS remains a
high priority, but a focus solely on drug injection will no longer suffice to
prevent further spread of HIV infection among individuals who use drugs.
The evolving nature of the epidemic also requires a broadened perspective
to encompass what appear to be new patterns of risk associated with drug
use. In particular, the emergence of "crack" cocaine use as a risk factor
for the transmission of HIV infection is a new and disturbing development
in the epidemiology of AIDS in the United States. The risks associated
with the use of crack are indirect (crack use is not in itself a mode of HIV
transmission). However, the tendency of those who use crack to engage
in unsafe sexual activity offers the potential for viral transmission.
OCR for page 47
STATE OF THE EPIDEMIC ~ 47
Unlike other forms of cocaine that are snorted or injected, crack
is smoked.l1 It can produce a rapid, intense effect that for most users
is a feeling of euphoria, including an increased sense of self-worth and
power. The effect of the drug wears off rapidly, however, and may be
followed by a craving to use more. As a result, some users will "binge,"
using crack every 10 to 20 minutes until they or their supply of drug
is exhausted. Thus, the intensity and transience of the crack "high"
encourage the development of dependence on the drug. For many males,
crack is reported to produce intensified sensations of sexual arousal and
sexual pleasure; indeed, in some places crack is marketed by highlighting
the sexual effects of the drug. Some females who become dependent
on crack show a willingness to exchange sex for the drug or for money
to obtain the drug. (Chapter 4 discusses at greater length the relationship
between crack use and female prostitution.) It is possible, of course, for
crack users to practice safer sex, including condom use, but the effects of
the drug and the perceived exigencies of repeating those effects reduce
the likelihood that safer sex will be practiced consistently (Friedman et
al., 19881. Small surveys of crack users have indicated an association
between crack use and sexually transmitted diseases (STDs) (Fullilove
et al., 1989), which supports the hypothesis that unprotected sex occurs
in such settings. Because STDs appear to be cofactors in the acquisition
of HIV infection, this association bodes ill for preventing the sexual
transmission of HIV. Indeed, surveys of patients at STD clinics in New
York have already found individuals with HIV infection whose only
behavioral risk factor appears to be sexual activity associated with crack
use (Chiasson et al., 1989; Hoegsberg et al., 1989~.
The rapid emergence of crack as a risk factor for HIV infection
highlights the need to be vigilant for signs of new patterns of nsk.
Thus, the committee recommends that the Public Health Service
establish mechanisms across its agencies for rapid identification and
assessment of the relationship of new drug use problems to the spread
of HIV. But changes in drug use are not the only new trends that are
i 1 Usually, cocaine is sold as a hydrochloride Set; in this form it must be either "sniffed" and absorbed
through the nasal mucosa or injected. To produce crack cocaine, the hydrochloride is removed; in this
form the cocaine may be vaporized and thus inhaled. Inhaling any drug into the lungs permits it tO
be absorbed into the blood stream rapidly and transported to the brain. Chemically, smoking crack is
identical to "freebasing" the hydrochloride salt form of cocaine. Previously, persons who wanted tO
freebase had to purchase cocaine hydrochloride and convert it themselves to the base form through a
complicated and dangerous process that involved heating volatile chemicals that could easily catch fire.
The rise in the use of crack has come from the development of new and safer methods for removing
the hydrochloride so that the drug can be sold in its base fonn.
12
Some crack houses (the locations at which the drug is sold and used) employ women to provide sex
to customers.
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48 ~ AIDS: THE SECOND DECADE
becoming apparent at the end of the first decade of the epidemic. There
are also noticeable shifts in the groups being affected directly by the
disease.
Throughout its studies, the committee has been struck by the diversity
of the populations now represented in the AIDS statistics. It has chosen
to look at women and the risks HIV poses to them as an example of a
heterogeneous population that will require considerably more attention in
the second decade of this epidemic than it received in the first. Because
most of the cases of AIDS reported in the early years of the epidemic
were diagnosed in men, few women appreciated their potential risk of
acquiring this disease. Yet as the epidemic has progressed, women of
all races have begun to account for a greater proportion of cases. The
majority of women represented by these statistics have a history of
intravenous drug use; a subset report no drug use themselves but indicate
a sexual relationship with an intravenous drug user in their risk profile.
The range of women at risk for AIDS, however, goes beyond those
involved through drug use. The sections that follow discuss the profile
of risk among women in the United States, noting the varied subgroups
of this population that are increasingly affected by the epidemic.
A PICTURE OF EMERGING RISK:
THE AIDS EPIDEMIC AMONG WOMEN
Early in the epidemic, vertical or pennatal transmission of HIV infection
(transmission from an infected pregnant woman to her offspring was of
particular concern because the majority of female AIDS cases (75.4 per-
cent) had been diagnosed in women between the ages of 20 and 39, prime
childbearing years. Today, concerns about perinatal transmission must be
joined with the recognition that the risk of HIV infection among women
of all ages is increasing, and more and more women are confronting the
disease in their own lives or in the lives of those around them.
This increasing risk can be seen in the epidemiological data in Table
1-2, which show rising numbers of female AIDS cases over the past
decade. By December 1989, a cumulative total of 10,611 cases of AIDS
had been reported in women 13 years of age or older; however, this figure
is likely to underestimate the scope of the problem owing to a failure to
report cases and reporting delays. The upward trend shown in Table 1-2
is particularly ominous for minority women, who are disproportionately
represented in almost every risk category (Table 1-31. In 1989 women
also accounted for a larger proportion of all AIDS cases diagnosed in this
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70 ~ AIDS: THE SECOND DECADE
transmission and the extent to which the incidence of these
diseases can be controlled; and
· the extent to which crack users can adopt safer sexual prac-
tices.
It is clear that crack use and its associated unsafe sexual activity rep-
resent a potentially important new wave of HIV transmission in the United
States. What is unclear is how large a wave this might be. The commit-
tee recommends that the Public Health Service support additional
research on crack use, including its epidemiology, its relationship to
sexual behavior, strategies to reduce its occurrence (both initiation
of use and continuance among low- and high-frequency users), and
methods for facilitating change in the sexual behavior of persons who
continue to use crack. Understanding the use of crack and its role in
the spread of HIV infection will require basic behavioral research, re-
search on the social factors associated with initiating and sustaining crack
use, biological research to determine effective treatment strategies, and
demonstration projects to assess the effectiveness of intervention efforts.
Collecting good data regarding AIDS and HIV infection is intnn-
sically difficult because of the sensitivity of the subject matter and the
difficulties involved in locating and studying some of the subgroups at
highest risk. (The last chapter of the report is a more detailed discussion
of how the quality of sensitive data can be improved.) Many researchers
rely on secondary analyses of data collected by others, including agen-
cies of the state and federal governments that are responsible for public
health. Timely access to those data is sometimes constrained by policies
pertaining to confidentiality as well as by other data release regulations.
Moreover, it is often difficult to compare data across data sources. For
example, in the CDC serologic survey of newborn infants, the data col-
lected on the sociodemographic characteristics of the mother vary from
state to state, precluding comparisons. In addition, in those states that
only collect limited sociodemographic information, efforts by state and
local public health agencies to design and implement programs and ser-
vices may be constrained by a lack of data on the subgroups who need
attention. Mathematical models hold some promise for improving our
understanding of the course of the epidemic and thus for planning the
delivery of programs and services. However, shortcomings in existing
data on the prevalence and distribution of risk-associated behaviors and
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STATE OF THE EPIDEMIC ~ 71
HIV infection, on the natural history of the disease,53 and on other factors
relevant to the spread of infection currently limit the use of such models.
Improving data quality for ~] populations will require a wide range
of additional efforts. In some instances (e.g., studies of adult gay men),
improvement will demand that new and younger cohorts be recruited as
part of ongoing efforts to understand the disease's natural history and
changing patterns of risk. For drug users, improvements in data qual-
ity will require innovative sampling strategies, modification of existing
surveillance approaches, and attention to the appearance of new drugs
whose use may pose additional risk to this population. Progress is needed
in several other areas as well, including improving the quality of data
from sites currently collecting information on the prevalence of infection
and risk behaviors (e.g., STY clinics), resolving interjurisdictional prob-
lems of confidentiality and data release, and establishing mechanisms for
determining what information to obtain in each survey (e.g., how much
detail to elicit concerning mothers in the neonatal surveys or patients in
surveys conducted in STD clinics).
Improving data quality is vital to improving our capacity to monitor
the movement of the epidemic. It is also essential for evaluating the
impact of intervention efforts to halt the spread of HIV infection. As the
agency within the Public Health Service with primary responsibility for
collecting surveillance data, CDC instituted data collection programs in
the first decade of the epidemic, targeting diverse at-nsk populations. The
dynamic nature of the epidemic, however, mandates continuing attention
to these programs to ensure that relevant subgroups are being monitored.
Thus, to facilitate the Centers for Disease Control's (CDC) ongoing
efforts to improve its AIDS-related data collection systems, the com-
mittee recommends that the agency initiate a systematic review of
current programs. This effort should draw on the expertise of both
CDC staff and outside experts.
In summary, sound epiclemiologica] data are important in clevelop-
ing accurate an] (3etallecl pictures of at-Hsk populations. The finer the
grain of these pictures, the more useful they become. Depictions that
Carl distinguish subgroups at Varying levels of risk and that Carl detect
changing risk patterns are vital in cl~ectiDg intervention resources to those
in greatest need; they ale also essential to the development of relevant
intervention programs and to the evaluation of these programs.54 Having
53As noted earlier, prospective studies of large cohorts of gay men (e.g., the MACS) have provided
valuable information on the natural history of the disease- for this population. Unfortunately, less is
known about the natural history of the disease in other populations, such as adolescents and women.
54For more information on program evaluation, see the recent report of the committee's Panel on the
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72 ~ AIDS: THE SECOND DECADE
identified and charactenzed the problem, insofar as the data permit, the
committee tutus to the question of what should be done. The next chapter
reviews intervention strategies for populations at risk arid discusses the
barriers that may impede their implementation.
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Representative terms from entire chapter:
drug users
