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1
Confronting AIDS:
Summary and Recommendations
STATUS OF THE EPIDEMIC
The first cases of the disease now known as acquired immune defi-
ciency syndrome (AIDS) were identified in 1981. Since then the disease
has become an epidemic as of September 1986 more than 24,500 cases
had been reported in the United States, and between 1 million and 1.5
million people in the United States probably are infected with the virus
that causes AIDS. In the same five years, great progress has been made
in understanding AIDS. Much is known about the virus that causes it,
about the ways in which the virus is transmitted, about the acute and
chronic manifestations of infection, and about its impact on society.
Although this knowledge is incomplete, it is extensive enough to permit
projections of a likely 10-fold increase in AIDS cases over the next five
years, to provide a basis for planning the provision of health care, to guide
policy decisions on public health, and to envisage strategies for drug and
vaccine development.
Early in the epidemic the diversity of diseases observed in patients was
explained by the discovery that the common thread was damage to the
patient's immune system. For this reason patients succumb to infections
with usually harmless microorganisms or to unusual cancers that individ-
uals with normal immune systems are able to ward off. The damage to the
immune system results primarily from the destruction of certain crucially
important white blood cells known as T lymphocytes. The death of these
blood cells is a consequence of their infection with human immunodefi
5
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6 CONFRONTING AIDS
ciency virus (HIV), also known as lymphadenopathy-associated virus
(LAV), human T-cell lymphotropic virus type III (HTLV-III), and
AIDS-associated retrovirus (ARV). The geographic and biologic origins
of HIV are not clear, but there is little doubt that this is the first time in
modern history that it has spread widely in the human population.
Infection and Transmission
A test has been developed to detect the presence in a person's blood of
antibodies that specifically recognize HIV and that serve as a marker for
viral infection. The virus can be isolated from most persons who test
positive for the presence of these antibodies. Anyone who has antibodies
to the virus must be assumed to be infected and probably capable of
transmitting the virus. Use of the test has greatly improved the safety of
the banked blood supply by enabling elimination of donated blood that
tests positive.
A person infected with HIV may not show any clinical symptoms for
months or even years but apparently never becomes free of the virus.
This long, often unrecognized period of asymptomatic infection, during
which an infected person can infect others, complicates control of the
spread of the virus.
The virus spreads from infected persons either by anal or vaginal
intercourse or by the introduction of infected blood (or blood products)
through the skin and into the bloodstream, which may occur in intrave-
nous (IV) drug use, blood transfusion, or treatment of hemophilia. In
addition, it can spread from an infected mother to her infant during
pregnancy or at the time of birth. Studies show no evidence that the
infection is transmitted by so-called casual contact that is, contact that
can be even quite close between persons in the course of daily activities.
Thus, there is no evidence that the virus is transmitted in the air, by
sneezing, by shaking hands, by sharing a drinking glass, by insect bites,
or by living in the same household with an AIDS sufferer or an
HIV-infected person. Male-to-male transmission of virus during anal
intercourse and male-to-female and female-to-male transmission during
vaginal intercourse have been well documented, but the relative efficiency
of various types of sexual transmission is not known.
The risk of infection with HIV is directly related to the frequency of
exposure to the virus. Groups now at highest risk of infection are
homosexual men, IV drug users, persons likely to have heterosexual
intercourse with an infected person, and the fetuses or newborn infants of
infected mothers. The risk of infection to recipients of blood or blood
products is now greatly reduced, although persons in this group already
infected may progress to disease.
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S UMMAR Y AND RECOMMENDATIONS 7
Clinical Manifestations of the Disease
HIV infection can result in a wide range of adverse immunologic and
clinical conditions. The opportunistic infections (those caused by micro-
organisms that seldom cause disease in persons with normal defense
mechanisms) and cancers resulting from immune deficiency are generally
the most severe of these, but necrologic problems, such as dementia
resulting from HIV infection of the brain, can also be disabling and
ultimately fatal. Other clinical consequences of HIV infection include
fevers, diarrhea, and swollen lymph nodes. Such cases, if not meeting the
criteria for AIDS, are termed ARC (AIDS-related complex). It is not yet
fully clear that asymptomatic HIV infection and ARC are stages of an
irreversible progression to AIDS, but many investigators suspect this to
be so.
The Public Health Service's Centers for Disease Control (CDC) has
established a set of criteria to define cases of AIDS based on the presence
of certain opportunistic infections and/or other conditions such as cancer.
Opportunistic infections in AIDS patients are serious, difficult to treat,
and often recurring. Among these infections, a type of pneumonia caused
by a protozoan, Pneumocystis carinii, is the most common cause of
death. Cures for any one of the host of opportunistic infections associated
with AIDS, with the possible exception of P. carinii pneumonia, would
not prolong survival much, because it is the HIV infection that causes the
immune system damage and thus, ultimately, the death of AIDS patients.
There have been no recorded cases of prolonged remissions of AIDS.
Most patients die within two years of the appearance of clinical disease;
few survive longer than three years.
Statistical Dimensions of the Epidemic
Because of the long symptom-free period between infection and clinical
disease, HIV has spread unnoticed and widely in some population groups.
Studies have shown that infection with the virus is far more common than
is AIDS or ARC, and suggest that at least 25 to 50 percent of infected
persons will progress to AIDS within 5 to 10 years of infection. The
possibility that the percentage is higher cannot be ruled out.
As of September 1986, approximately 24,500 cases of AIDS had been
reported to the Centers for Disease Control. The number of ARC cases-
which is somewhat uncertain, depending on the definition adopted is
probably between 50,000 and 125,000. Among homosexual and bisexual
men in some cities, as many as 70 percent may be infected. Substantial
numbers of IV drug users also are infected, although precise figures are
lacking.
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8 CONFRONTING AIDS
FIIV infection is a major and growing problem in some developed
countries besides the United States, and it is nearing catastrophic
proportions in certain developing countries, particularly in parts of
sub-Saharan Africa. Worldwide, as many as 10 million persons may be
infected.
There is no satisfactory treatment now for HIV infection. Prospects are
not promising for at least five years and probably longer for a vaccine
against HIV. One drug has recently shown benefits in the treatment of
AIDS, but agents that are acceptably safe for possible long-term treat-
ment and that effectively halt or cure the disease may also not be available
for at least five years.
THE FUTURE COURSE OF THE EPIDEMIC
Estimates of the future course of the epidemic are important to the
planning of health care, public health measures, and research. Following
a June 1986 planning conference at Coolfont, Berkeley Springs, West
Virginia, the Public Health Service (PHS) issued projections of the course
of the epidemic through 1991. Among the most important PHS estimates
are the following:
· By the end of 1991 there will have been a cumulative total of more
than 270,000 cases of AIDS in the United States, with more than 74,000
of those occurring in 1991 alone.
· By the end of 1991 there will have been a cumulative total of more
than 179,000 deaths from AIDS in the United States, with 54,000 of those
occurring in 1991 alone.
· Because the typical time between infection with HIV and the
development of clinical AIDS is four or more years, most of the persons
who will develop AIDS between now and 1991 already are infected.
· The vast majority of AIDS cases will continue to come from the
currently recognized high-risk groups.
· New AIDS cases in men and women acquired through heterosexual
contact will increase from 1,100 in 1986 to almost 7,000 in 1991.
· Pediatric AIDS cases will increase almost 10-fold in the next five
years, to more than 3,000 cumulative cases by the end of 1991.
Projections of the future incidence and prevalence of AIDS and HIV
infection derived from empirical models such as those used by the PHS
pose several difficulties, not the least of which is the assumption that past
trends such as the distribution of cases by age, sex, geographic location,
and risk group-will not change with time.
Uncertainties notwithstanding, the Institute of Medicine-National Acad-
emy of Sciences Committee on a National Strategy for AIDS believes that
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S UMMAR Y AND RECOMMENDATIONS 9
the PHS estimates are reasonable, and the committee supports their use
for planning purposes. This acceptance does not, however, obviate the
need to acquire information that will facilitate the construction of better
models that will lead to more reliable estimates. Data are needed on many
aspects of the virus, its infectivity, the natural history and pathogenesis of
disease, the size of the groups at risk, and the epidemiology of the
. , .
eploemlc.
The populations at highest risk for HIV infection in the near future will
continue to be homosexual men and IV drug users. HIV infection will
probably continue to spread in homosexual males, although possibly at a
slower rate than in the past because of increased avoidance of anal
intercourse and greater use of condoms. Continuing spread of HIV in IV
drug users throughout the United States is also expected. Infected
bisexual men and IV drug users of both sexes can transmit the virus to the
broader heterosexual population where it can continue to spread, partic-
ularly among the most sexually active individuals. Although there is a
broad spectrum of opinion on the likelihood of further spread of HIV
infection in the heterosexual population, there is a strong consensus that
the surveillance systems and studies presently in place have very limited
ability to detect such spread. Better approaches to tracking this spread
can be instituted, but general population surveys are probably neither
practical nor ethical. The committee believes that over the next 5 to 10 years
there will be substantially more cases of HIV infection in the heterosexual
population and that these cases will occur predominantly among the
population subgroups at risk for other sexually transmitted diseases.
In view of the numbers of people now infected, it is extremely unlikely
that the rising incidence of AIDS will soon reverse itself. Disease and
death resulting from HIV infection are likely to be increasing 5 to 10 years
from now and probably into the next century. But the opportunity does
exist to avert an increase in this burden by preventing the further spread
of infection.
OPPORTUNITIES FOR ALTERING THE COURSE
OF THE EPIDEMIC
Neither vaccines nor satisfactory drug therapies for HIV infection or
AIDS are likely to be available in the near future, but actions can be taken
now to reduce the further spread of HIV infection and thus to alter the
course of the epidemic.
Public Education
For at least the next several years, the most effective measure for
significantly reducing the spread of HIV infection is education of the
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~ 0 CONFRONTING AIDS
public, especially those individuals at higher risk. (In fact, education will
be a central preventive public health measure for this disease under any
circumstances.) People must have information on ways to change their
behavior and encouragement to protect themselves and others. "Educa-
tion" in this context is not only the transfer of knowledge but has the
added dimension of inducing, persuading, or otherwise motivating people
to avoid the transmission of HIV. Education also is needed for those who
are in a position to influence public opinion and for those who interact
with infected persons. The present federal effort is woefully inadequate in
terms of both the amount of educational material made available and its
clear communication of intended messages. The committee recommends a
major educational campaign to reduce the spread of HIV.
If an educational campaign is to change behavior that spreads HIV
infection, its message must be as direct as possible. Educators must be
prepared to specify that intercourse anal or vaginal with an infected or
possibly-infected person and without the protection of a condom is very
risky. They must be willing to use whatever vernacular is required for that
message to be understood. Admonitions to avoid "intimate bodily con-
tact" and the "exchange of bodily fluid" convey at best only a vague
message.
In addition to knowing which sexual activities are risky, people also
need reassurance that there are sexual practices that involve little or no
risk. For example, unprotected sexual intercourse between individuals
who have maintained a sexual relationship exclusively with each other for
a period of years can be considered essentially free of risk for HIV
transmission, assuming that other risk factors are absent. An integral
aspect of an education campaign must be the wide dissemination of clear
information about those behaviors that do not transmit the disease.
Condoms have been shown under laboratory conditions to obstruct
passage of HIV. They should be much more widely available and more
consistently used. Young people, early in their sexually active lives and
thus less likely to have been infected with HIV, have the most protection
to gain from the use of condoms.
Because in the United States the majority of AIDS patients are men,
the implications of HIV infection in women have often been overlooked.
Women need to know that if they are infected with HIV they may
transmit the virus to their sexual partners and possibly to their future
offspring. This message is particularly important for IV drug users and
their sexual partners.
The most obvious targets for a campaign of education about AIDS are
persons whose behavior puts them at special risk-for example, male
homosexuals who practice anal intercourse without a condom. Education
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5 UMAJAR Y AND RECOMMENDA TIONS ~ ~
directed at this group could exploit the fact that although HIV infection
prevalence higher than 50 percent occurs in male homosexuals in some
urban centers, the much larger proportion of male homosexuals not
infected outside these areas could protect themselves.
Many other groups, including health care professionals, public officials,
and opinion makers, must receive education about AIDS. In addition,
special educational efforts must be addressed to teenagers, who are often
beginning sexual activity and also may experiment with illicit drugs. Sex
education in the schools is no longer only advice about reproductive
choice, but has now become advice about a life-or-death matter. Schools
have an obligation to provide sex and health education, including facts
about AIDS, in terms that teenagers can understand.
In planning the needed education programs for various groups, cultural
traditions and practices should be taken into account, because blacks and
Hispanics make up a disproportionately high percentage of AIDS cases.
Because so many different groups must be educated in this campaign, its
early activities must include the instruction of trainers suitable to each of
the groups.
Not only must education about AIDS take many forms, but also it must
have financial support from many sources. The most fundamental obliga-
tion for AIDS education rests with the federal government, which alone is
in a position to develop and coordinate a massive campaign. The
committee recommends consideration of the establishment of a new office
or appointment that would be devoted exclusively to education for the
prevention of HIV infection, possibly within the Office of the Assistant
Secretary for Health. The office should be responsible for implementing
and assessing a variety of innovative educational programs and for
encouraging the involvement of state and local governments and private
organizations.
The committee recognizes that the reluctance of governmental author-
ities to address issues of sexual behavior resects a societal reticence
regarding open discussions of these matters. However, the committee
believes that governmental officials charged with protection of the
public's health have a clear responsibility to provide leadership when the
consequences of certain types of behavior have serious health outcomes.
If government agencies continue to be unable or unwilling to use direct,
explicit terms in the detailed content of educational programs, contractual
arrangements should be established with private organizations that are
not subject to the same inhibitions.
A massive, coordinated educational program against HIV infection will
not be cheap. Although there was an increase in funding by the federal
government in Fiscal Year (FY) 1986 for such activities, many times the
amount budgeted could be spent usefully.
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12 CONFRONTING AIDS
The committee recommends that substantially increased educational and
public awareness activities be supported not only by the government but
also by foundations, by experts in advertising, by the information media,
and by other private sector organizations that can effectively campaign
for health. Legal and administrative barriers to the use of paid television
for these educational purposes should be removed.
Preventing HIV Infection Among IV Drug Users
As a group, IV drug users have incurred the second-largest number of
AIDS cases in the United States. IV drug users are also the primary
source of heterosexual HIV transmission (via their sexual partners) and of
perinatal transmission to newborn children. The large differences in the
prevalence of HIV infection in IV drug users in different parts of the
country is heartening, because it indicates an opportunity to halt the
further spread of infection by changing behavior.
Preventing AIDS among the sexual partners of IV drug users may be a
more difficult matter. The behavior changes required to prevent hetero-
sexual and in utero transmission can entail disruption of sexual relation-
ships and decisions to forgo having children. These behavior changes
require intensive efforts with persons who are generally distrustful of
authority and unlikely to be responsive to the mere dissemination of
information. Sexual partners of IV drug users who do not themselves use
drugs may also be difficult to reach, because they do not necessarily come
in contact with treatment centers or with the criminal justice system.
There is no doubt that the best way of preventing HIV infection among
IV drug users would be to stop the use of illicit IV drugs altogether. The
United States' experience in curbing use of such drugs has not been
wholly promising, however. The fear of AIDS will probably lead some IV
drug users to seek treatment for their addictions. But in the United States
as a whole, the availability of treatment for IV drug use was less than the
demand even before the AIDS epidemic. Thus, a major possibility for
reducing illicit IV drug use and the transmission of HIV is expansion of
the system for treating IV drug use. Through treatment, users who have
not been infected with HIV could greatly reduce their chances of being
infected, and users who have already been infected would be less likely to
infect others. At a purely economic level, treating AIDS costs from
$50,000 to $150,000 per case, whereas drug abuse treatment costs as little
as $3,000 per patient per year in nonresidential programs. The committee
believes that more methadone and other treatment programs, detoxifica-
tion programs, and testing and counseling services are needed.
In general, the life-styles and the frequent involvement of IV drug users
in unlawful activity make it difficult to apply traditional public health
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5 UMMAR Y AND RECOMMENDA TION5 ~ 3
measures in an effort to control the spread of infection in this population.
It will not be possible to persuade all IV drug users to abandon drugs or
to switch to noninjectable drugs. Many may wish to reduce their chances
of exposure to HIV but will neither enter treatment nor refrain from all
drug injection. Increasing the legal availability of hypodermic needles has
received some support among public health officials but has generally
been opposed by law enforcement officials, who predict that it would lead
to greater IV drug use. However, if drugs are available and clean needles
and syringes are not, IV drug users will probably use available unsterile
equipment. The committee concludes that trials to provide easier access to
sterile, disposable needles and syringes are warranted. Results of such trials
should be measured both in incidence of HIV infection and in drug use.
Public Health Measures
The use of public health methods such as contact tracing is complicated
in HIV infection by the frequently long lag between infection and
identification of disease, the lack of satisfactory treatment for contacts,
the impracticality of follow-up in some circumstances, and the potentially
adverse social consequences for those identified (such as discrimination
in housing or employment).
In 1983-1984, researchers discovered a way to culture the causative
agent of AIDS and thus provided the basis for the HIV antibody test used
to screen blood. Two years later, this test is used more than 20 million
times a year, or about 80,000 times per working day. Although not 100
percent sensitive or specific, the test is at least as accurate as most
serologic tests in routine use, and it has made the nation's blood supply
much safer.
The use of the test remains controversial because of public perceptions
about AIDS, the technical limitations of the test, and the sheer magnitude
and diversity of the test's present and projected applications. Important
questions about the use of the test relate to uncertainties over the
long-term implications of positive results. As more data become available
from longitudinal studies of the health of seropositive persons those
who test positive for HIV antibodies the implications of a positive result
will become clearer, and the significance of the test can be better
explained to those tested.
Screening tests are of paramount importance in the context of blood,
plasma, and tissue banking. The ability to screen blood rather than donors
obviates some of the potential for discrimination arising with programs
that depend on identifying individuals at risk. The small fraction of
false-negative test results and the length of time between infection with
the virus and the appearance of antibodies underscore the continuing
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14 CONFRONTING AIDS
need for those who have engaged in high-risk behaviors to refrain from
donation. The committee urges that blood and plasma collection centers
also establish administrative systems to further encourage self-deferral of
donations and diversion of suspect blood to research while maintaining
donor privacy.
Surveillance
Surveillance, which involves both the passive reporting and the active
seeking of information, provides data on the prevalence, incidence, and
distribution of disease or infection in the population. Such data can be
used to monitor the spread of a disease, to shed light on the mechanisms
of transmission of infectious agents, to help in designing public health
measures to prevent the spread of a disease, to evaluate the eDectiveness
of interventions, and to guide planning for the provision of facilities. Data
on HIV infection and related disease are critical to all aspects of coping
with the epidemic.
All states require that AIDS cases be reported promptly to local and
state health authorities, who then report the cases to the Centers for
Disease Control. Unfortunately, anecdotal accounts suggest that the
stigma associated with AIDS may have led to some underreporting of new
cases and fatalities. Prompt reporting of individual AIDS cases, the
disease's manifestations, the cause of death, and underlying risk factors is
essential. The committee supports a vigorous program of early reporting of
both AIDS and ARC cases (as soon as acceptable definitions for reporting
ARC can be formulated) to local and state public health agencies under
strict policies of confidentiality.
Surveillance of the general population for HIV infection presents
ethical, logistic, and practical problems. Specific epidemiologic research
is therefore needed to ascertain the spread of infection in certain
populations, such as heterosexuals.
Mandatory Screening
Mandatory screening of the entire U.S. population for HIV infection
would be impossible to justify now on either ethical or practical grounds.
Mandatory screening of selected subgroups of the population for exam-
ple, homosexual males, IV drug users, prostitutes, prisoners, or pregnant
women raises serious problems of ethics and feasibility. People whose
private behavior is illegal are not likely to comply with a mandatory
screening program, even one backed by assurances of confidentiality.
Mandatory screening based on sexual orientation would appear to dis-
criminate against or to coerce entire groups without justification.
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SUMMARY AND RECOMMENDATIONS 15
The committee is generally opposed to the mandatory screening now of
population subgroups, but recognizes that arguments can be made for its
application in the military.
Voluntary Testing
In the context of personal health services, the HIV antibody test
enables a physician to identify an infected patient. But it should be the
patient's decision to be tested, and only after being informed of the
implications of a reaffirmed positive test and assured of strict confidenti-
ality. The importance of confidentiality should perhaps be emphasized
through the establishment of punitive measures against persons who
make unauthorized disclosure of antibody test results.
Voluntary, confidential testing should be encouraged, because individ-
ual and aggregate antibody test results enable epidemiologists to assemble
baseline data for longitudinal studies of the incidence, prevalence, and
natural history of the disease. Such studies can be used to monitor the
spread of the virus and to provide the data needed for changing control
strategies.
Many persons in high-risk groups are already aware of the dangers their
behavior poses to themselves or others. Yet screening programs possibly
could identify many seropositive persons who had no reason to suspect
they were at risk of infection" for instance, someone unaware of a sexual
partner's infection or IV drug use. Persons who test positive in any
circumstance have a right to know the results. No testing should be
undertaken without adequate pre-test and post-test counseling. If situa-
tions arise in which the testing agency has no mandate to provide
counseling as by the military with applicants rejected because they test
seropositive counseling programs by third parties should be established.
The Role of Coercive Measures in Public Health Efforts
Proposals have been made to use coercive measures to control AIDS
and HIV infection. Newspaper editorials and legislative bodies have
discussed measures such as isolation and quarantine traditionally used to
contain contagious disease. However, those diagnosed with AIDS do not
usually pose great danger in the further spread of the epidemic. Rather,
the greater danger lies with the hundreds of thousands of people who are
already infected but asymptomatic. These individuals could not be
identified without universal screening programs that would infringe on
civil liberties in a manner unacceptable in this society.
The active voluntary cooperation of individuals who are at risk will be
needed to curtail the epidemic. Coercive measures will not solicit this
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26 CONFRONTING AIDS
and safety of treatments for HIV infection is by means of randomized
clinical trials in which control groups receive a placebo. When an
effective and acceptably safe agent is found, newer candidate drugs
should be compared against it.
Shortly before the publication of this report, data were released by the
National Institutes of Health and the Burroughs Wellcome Company from
a study of azidothymidine (AZT) administered for 20 weeks to a group of
approximately 140 AIDS patients while a similar group received a
placebo. The patients were selected for having had no more than one bout
of Pneumocystis carinii pneumonia. There was 1 death in the AZT group
compared with 16 deaths in the placebo group. Because of the time at
which this information became available, the committee was not able to
analyze the data from this study in enough detail to judge the risks and
benefits of this drug. Further evaluation will be needed to fully determine
the side effects of AZT treatment and its long-term efficacy and safety for
various categories of patients.
Decisions on the design of studies to test new drugs for HIV infection
must be made on a case-by-case basis. Such decisions should take into
account the results of further studies on the efficacy and toxicity of AZT,
the category of patients to whom the drug under consideration would be
given, and preliminary information on the safety and efficacy of the drug.
It is essential that mechanisms for the efficient testing of candidate
drugs be established. Efforts should be undertaken now to ensure that
organizational and financial support will be sufficient to permit the
expeditious evaluation of promising therapeutic agents for HIV infection.
Success in the development of antiviral agents will be much more likely
if the expertise resident in the industrial, governmental, and academic
research communities can be engaged and coordinated.
Vaccines
The development of a vaccine against viruses like HIV has never been
seriously attempted, much less achieved. Except for a vaccine used in
cats, no vaccine against such viruses is available. The properties of
viruses related to HIV suggest that developing a vaccine will be difficult.
It is also likely that a subunit vaccine, rather than a whole-virus vaccine,
will be needed, and these have additional problems of efficacy. Moreover,
even if the scientific obstacles were surmounted, legal, social, and ethical
factors could delay or limit the availability of a vaccine. For these
reasons, the committee does not believe that a vaccine is likely to be
developed for at least five years and probably longer.
Because HIV attacks the immune system itself, a successful vaccine
development program will require a greatly expanded knowledge base.
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SUMMARY AND RECOMMENDATIONS 27
The urgency of the problem calls for the active and cooperative partici-
pation of scientists in government, academia, and industrial labora-
tories.
Much of the expertise in vaccine development is in the industrial
sector. However, contributions of industry to the development of an HIV
vaccine are inhibited by the substantial developmental costs in the
absence of a significant probability of financial return and by apprehen-
sion over potential liability incurred in the course of vaccine distribution.
Creative options for the governmental support of industrial research,
guarantees of vaccine purchase, and the assumption of reasonable liabil-
ity should, therefore, be actively explored and encouraged.
The committee finds that the federal coordination of vaccine develop-
ment has been inadequate. The National Institutes of Health has recently
reorganized its efforts on AIDS, and the committee encourages the
appointment of strong leadership to the vaccine program with the
authority and responsibility to develop a strategy for a broad-ranging
vaccine development program.
Social Science Research Needs
.
Social science research can help develop effective education programs
to encourage changes in behavior that will break the chain of HIV
transmission. It can contribute to the design of policies that reduce the
public's fear of AIDS and that help eliminate discriminatory practices
toward AIDS patients. And it can shape the establishment of health care
and social services for AIDS patients.
A major research need is for studies that will improve understanding of
all aspects of sexual behavior and drug use and the factors that influence
them. There has been little social science research specifically focusing on
HIV infection and AIDS. Demographic features and social dynamics
related to HIV infection should be thoroughly studied in order to develop
effective means to reach people at risk, to delineate the obstacles to
behavioral change, and to determine effective language and styles of
communication among various population groups.
Different approaches to achieving behavioral change in the various
groups at risk of HIV infection should be monitored. Wherever feasible,
educational programs should have an evaluation component.
Treatment, social service programs, and hospital management
practices should be assessed to determine which practices work best
and are most cost-effective. Experiments based on different models of
patient care should be evaluated with regard to their applicability to
other areas, providing a foundation on which to build locally relevant
programs.
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28 CONFRONTING AIDS
Funding for Research on AIDS and HIV
Confronting the AIDS epidemic will require new and substantially in-
creased financial support for basic biomedical and social science research
activities. The rapid and effective application of the insights provided by
basic research will also require the significant expansion of applied research
activities. In addition, funds are needed to provide researchers with adequate
equipment and facilities, to attract high-caliber individuals into the field, and
to support the training of future investigators.
The Public Health Service's request to the U.S. Department of Health
and Human Services for AIDS-related research in FY 1988 was $471
million. If appropriated, this budget would represent a doubling of funds
from FY 1986 to FY 1988. The National Science Foundation spends just
over $50 million annually on social science research, but presently a very
small amount of this is on studies related to AIDS.
The committee believes that there are sufficient areas of need and
opportunity to double research funding again by 1990, leading to an approx-
imately $1 billion budget in that year. These funds must be new appropria-
tions, not a reallocation of existing Public Health Service funds. Areas of
clear need include high-containment facilities for primate research, better
containment facilities for universities and research institutes, training funds,
construction and renovation funds, equipment funds, social science and
behavioral research funding, vaccine and drug development efforts, inter-
national studies, basic research efforts, and epidemiologic studies. In addi-
tion, funds diverted from NIH programs to support the AIDS effort should
be returned.
In recent years there has been a steady decline in the proportion of NIH
funds spent on grants for investigator-initiated research on AIDS and an
increasing proportion expended on contracts for NIH-designed studies. A
more balanced growth of support is desirable in coming funding cycles to
promote the involvement of the nonfederal basic research community to a
greater extent. The level of funding for investigator-initiated studies in all
areas (including non-AIDS studies) must be adequate to continue to attract
the most able younger scientists to clinical, social science, and basic
biomedical research, or the quality and productivity of the scientific enter-
prise will suffer.
INTERNATIONAL ASPECTS OF AIDS AND HIV INFECTION
More than half the countries of the world have reported cases of AIDS.
Although reporting may not be reliable in many countries, it has been
estimated, based on studies in specific areas, on the number of identified
cases, and on the U.S. ratio of cases to seropositive persons, that up to 10
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S UMMAR Y AND RECOMMENDA TIONS 29
million people worldwide may be infected with HIV. A substantial
proportion of these are in sub-Saharan Africa, particularly central
Africa.
It is likely that millions of infected adults will progress to AIDS in the
next decade, and that tens of thousands of infants will contract the
syndrome perinatally. In response to this situation, many developed and
developing countries are initiating research and prevention programs, and
the World Health Organization is initiating a global program for the
control of AIDS.
Rationale for U.S. International Involvement
The United States has actively promoted the technological develop-
ment of less developed countries for economic, altruistic, and political
reasons. Because AIDS most often occurs in young adults, it imposes a
particularly severe burden on development efforts in these nations by
draining off intellectual and economic assets namely, productive indi-
viduals.
U.S. technical assistance programs have often included major contri-
butions to efforts in improving health through programs in immunization
and nutrition. The burden of AIDS and other HIV-related conditions
added to the lengthy existing agenda of health problems in developing
countries may negate the hard-won gains made by these programs.
New knowledge critical to prevention and treatment of HIV infection
may be more readily obtained outside of the United States. For instance,
the extent of perinatal and heterosexual transmission in central Africa
offers opportunities for U.S. research resources to complement local
expertise in mutually beneficial investigations.
Certain federal agencies have special international responsibilities or
may be able to make contributions to the global effort to control the AIDS
epidemic through support of activities in the United States. These
agencies include the Agency for International Development, the Food and
Drug Administration, and the Centers for Disease Control. There is also
need for U.S. involvement in AIDS internationally because the opera-
tions of many federal agencies and other organizations require that their
personnel visit or live in countries where HIV infection may be relatively
prevalent. Such personnel may be at risk of infection or need appropriate
care.
Risks of Infection Outside the United States
Sexual transmission probably accounts for the largest proportion of
transmission of HIV outside of the United States. Bidirectional hetero
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30 CONFRONTING AIDS
sexual transmission is the dominant mode of HIV transmission in
sub-Saharan Africa. HIV infection is also becoming a major problem
among female prostitutes in many areas.
HIV transmission between homosexual men must be presumed to be
possible wherever behavior involving risk of infection is practiced.
Knowledge of the frequency with which homosexual behavior occurs in
different countries and cultures is incomplete, however, and existing
information may not be reliable.
Transfusion of blood poses a substantial risk of HIV infection in many
countries of the world that have not adopted procedures necessary to
prevent such transmission and that lack the laboratories, finances, or
personnel needed to institute such measures.
Application of currently available serologic tests will be possible only in
some situations. The committee concludes that simpler serologic tests that
give sensitive and specific results rapidly and reliably are essential before
widespread efforts to control HIV transmission via the blood supply in
developing countries will be practicable.
Transmission of HIV through the sharing of needles and syringes used
to inject IV drugs is well documented in countries where IV drug use is
common. However, some evidence suggests that in Africa injections
administered for medical purposes with unsterile needles and syringes
may be a route of HIV transmission.
There is no evidence to support the hypothesis that HIV is transmitted
through insect vectors or casual contact. Studies in Africa of household
contacts of infected persons and the age distribution of AIDS and HIV
infection suggest that transmission by casual contact is very infrequent or
nonexistent. The relative ineffectiveness of needlestick transmission in
health professionals and the age distribution of AIDS and HIV infection
also suggest that mechanical transmission by insects is unlikely.
International Research Opportunities
The United States has contributed greatly to the understanding of AIDS
and HIV infection through its investment in domestic research. The
international efforts undertaken to date illustrate the reasons and oppor-
tunities for the United States to contribute to multinational and bilateral
efforts.
As is appropriate, some of the United States' support for international
efforts on AIDS and HIV is committed for use exclusively through the
World Health Organization (WHO). The committee believes that addi-
tional bilateral or multinational activities involving the United States
outside of the WHO program will be essential to enhancing the prospects
for achieving rapid control over the disease.
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S UMMAR Y AND RECOMMENDATIONS 31
The WHO program is in the early phases of organization, but the need
for action in some countries is urgent. The focus of the WHO program is
prevention and control of AIDS and HIV infection rather than research
opportunities, and links of U.S. investigators or institutions with affected
countries could provide a means of rapid response to their needs.
The committee recommends that the United States be a full participant
in international efforts against AIDS and HIV infection. U. S. involvement
should be both through support of WHO programs and through bilateral
arrangements in response to the needs and opportunities in individual
countries. These arrangements should be pursued in a fashion that is
acceptable to host governments.
The magnitude of the problem internationally and the variety of reasons
warranting U.S. participation in international efforts convince the com-
mittee that the United States should make clear its commitment to global
prevention and control of AIDS and HIV infection.
The following are feasible goals: (1) the total amount of U.S. funding
going to international efforts in AIDS-related research and prevention
should reach $50 million per year by 1990 (this is approximately 2.5
percent of the amount recommended by the committee for use in the
United States for these purposes); (2) increased funding should be
provided to the WHO program on the basis of demonstrated capacity to
use such funds productively; and (3) increased funds to bilateral research
or technical assistance programs or projects abroad should be provided
on the basis of review procedures involving persons familiar with the local
conditions under which such projects are undertaken.
The committee found information to be lacking on the extent and kinds
of work on HIV-related conditions by U.S. investigators in other coun-
tries or on their collaborations with foreign researchers. The committee
recommends that an evaluation be initiated immediately to identify all
work under way and to assess and coordinate the roles and responses of
the various U.S. federal agencies, private voluntary groups, and founda-
tions interested in international efforts on AIDS and HIV.
GUIDANCE FOR THE NATION'S EFFORTS
No single approach whether education and other public health mea-
sures, vaccination, or therapy is likely to be wholly successful in
combating all the problems posed by HIV infection. Similarly, neither the
public sector, the private sector, nor any particular agency, organization,
or group can be expected by itself to provide the solution to the diverse
problems posed by the disease. Federal agencies (notably the National
Institutes of Health, the Centers for Disease Control, and the Food and
Drug Administration) have contributed enormously to the rapid acquisi
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32 CONFRONTING AIDS
lion of knowledge about AIDS and HIV or to techniques to help in its
control. They should continue their efforts, but greater involvement of the
academic and private sectors should now be encouraged.
All of these approaches and entities must be organized in a national
effort, integrated and coordinated so that participants are working
toward common goals and are aware of each other's activities. Such
coordination does not imply management by a centralized directorate.
However, monitoring of the many activities in the effort is necessary to
ensure that important matters are not overlooked and that periodic
review can be conducted for the adjustment of priorities and general
directions.
What Is Needed?
The committee found gaps in the efforts being directed against the
AIDS epidemic and in the employment of the nation's resources. It also
identified as a major concern a lack of cohesiveness and strategic planning
throughout the national effort. A body is needed to identify necessary
actions and to mobilize underused resources in meeting the challenge of
the epidemic. Therefore, the committee recommends that a new entity a
National Commission on AIDS be established to meet the need for
guidance of the national efforts against HIV.
The commission would monitor the course of the epidemic; evaluate
research, health care, and public health needs; encourage federal, state,
philanthropic, industrial, and other entities to participate; stimulate the
strongest possible involvement of the academic scientific community;
encourage greater U.S. contribution to international efforts by relevant
government agencies and other organizations; make recommendations for
altering the directions or intensity of health care, public health, and
research efforts as the problem evolves; monitor and advise on related
legal and ethical issues; and report to the American public.
The commission should achieve its purposes by assuming an advisory
role and by acting catalytically in bringing together disparate groups. It
should not dispense funds but should be provided with sufficient re-
sources to undertake its mission effectively.
Establishment of the Commission
To oversee and marshal the nation's resources effectively, the pro-
posed commission should have certain attributes. It should be able to
engage all of the diverse public and private resources that can be brought
to bear on HIV-associated problems. It must be sufficiently independent
to give critical advice to participants in these efforts. It should have
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SUMMARY AND RECOMMENDATIONS 33
sufficient national and international stature and credibility for its advice to
command the attention of participants.
The advantages and disadvantages of various institutional locations for
the commission were evaluated by the committee. The requirement for
spanning both public and private sectors implies that it should not be
created within the administrative structure of the federal executive
branch. However, the desirability of affirming a national commitment to
the control of AIDS and HIV suggests that the commission should be
endorsed at the highest levels of government. Accordingly,
· The committee recommends that the proposed National Commission
on AIDS be created as a presidential or joint presidential-congressional
. .
commission.
· The committee recommends that the President take a strong leader-
ship role in the effort against AIDS and HIV, designating control of AIDS
as a major national goal and ensuring that the financial, human, and
institutional resources needed to combat lIIV infection and to care for
AIDS patients are provided.
· The committee urges all cabinet secretaries and other ranking exec-
utive branch officials to determine how AIDS and HIV relate to their
responsibilities and to encourage the units within their purview to work
collaboratively toward responding to the epidemic on a national and
international level.
· The committee recommends that the U.S. Congress maintain its
strong interest in the control of AIDS and HIV infection and increase
research appropriations toward a level of $1 billion annually by 1990. In
addition, it recommends that by 1990 there be significant federal contri-
butions toward the $1 billion annually required for the total costs of
education and public health measures.
MAJOR RECOMMENDATIONS
In summary, the committee recommends that two major actions be
undertaken to confront the epidemic of HIV infection and AIDS. They
are as follows:
1. Undertake a massive media, educational, and public health cam
paign to curb the spread of HIV infection.
2. Begin substantial, long-term, and comprehensive programs of re-
search in the biomedical and social sciences intended to prevent HIV
infection and to treat the diseases caused by it.
Within a few years these two major areas of action should each be
supported with expenditures of $1 billion a year in newly available funds
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34 CONFRONTING AIDS
not taken from other health or research budgets. The federal government
should bear the responsibility for the $1 billion in research funding and is
also the only possible majority funding source for expenditures of the
magnitude seen necessary for education and public health.
Furthermore, to promote and integrate public and private sector efforts
against HIV infection, a National Commission on AIDS should be
created. Such a commission would advise on needed actions and report to
the American people.
Curbing the spread of HIV infection will entail many actions, including
the following:
· Expand the availability of serologic testing, particularly among
persons in high-risk groups. Encourage testing by keeping it voluntary
and ensuring confidentiality.
· Expand treatment and prevention programs against IV drug use.
Experiment with making clean needles and syringes more freely available
to reduce sharing of contaminated equipment.
The care of HIV patients can be greatly improved by applying the
results of health services research. In the meantime, the following actions
should be taken:
· Begin planning and training now for an increasing case load of
patients with HIV infection. Emphasize care in the community, keeping
hospitalization at a minimum.
· Find the best ways to collect demographic, health, and cost data on
patients to identify cost-effective approaches to care.
· Devise methods of financing care that will provide appropriate and
adequate funding.
The recommended research efforts should include the following ac-
tions:
· Enhance the knowledge needed for vaccine and drug development
through basic research in virology, immunology, and viral protein structure.
· Improve understanding of the natural history and pathogenesis of
AIDS, and trace the spread of HIV infection by means of epidemiologic
and clinical research.
· Study sexual behavior and IV drug use to find ways to reduce the risk
of infection.
· Encourage participation of academic scientists in research against
AIDS, in part by increasing the funding for investigator-initiated research
proposals.
· Solicit participation of industry in collaboration with federal and
academic research programs.
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S UMMAR Y AND RECOMMENDATIONS 35
· Expand experimental animal resources, working especially to con-
serve chimpanzee stocks, and develop new animal models of HIV
infection.
Because AIDS and HIV infection are major and mounting health
problems worldwide:
· The United States should be a full participant in international efforts
against the epidemic.
· United States involvement should include both support of World
Health Organization programs and bilateral efforts.
NOTE: Reference documentation for material in this summary is presented in the
respective chapters of the full report.
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Representative terms from entire chapter:
drug users
