Juice Images/SuperStock
Learning Objectives
1. Compare the basic biological distinctions of HIV and AIDS
2. Describe how an HIV/AIDS diagnosis affects different individual, familial, and social domains
3. Understand the clinical and social implications of an HIV/AIDS diagnosis during different stages
of the life cycle
4. Demonstrate an understanding of ART regimens and other treatment methods
5. Understand the role of stigma and discrimination in screening, treatment, and prevention
interventions
6. Identify the unique issues of HIV/AIDS management in ambulatory care settings
7. Describe how an understanding of the ecology of HIV/AIDS can improve individual, social,
and policy issues
Blood and Immune System
Disorders: HIV/AIDS
4
Tan tan/Imaginechina/Associated Press
CN
CT
CO_H
CO_NL
CO_CRD
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CHAPTER 4Section 4.1 Introduction to HIV/AIDS
4.1 Introduction to HIV/AIDS
In June 1981, the U.S. Centers for Disease Control and Prevention (CDC) published a report on the clinical condition of five young male homosexuals who all presented the same unusual group of symptoms (CDC, 1981b). Although these individuals had previously been healthy,
they were all diagnosed with Pneumocystis carinii pneumonia (PCP), a rare condition associated
with a severely compromised immune system. Three weeks later, another report from the CDC
documented 26 gay men in New York and California with compromised immune systems from
both PCP and the cancer Kaposi sarcoma (CDC, 1981a). Although initially given the acronym GRID
(gay-related immune deficiency, because of the sexuality of the men in these initial cases), this
disease eventually came to be known by the acronym HIV/AIDS.
Clinical Overview
HIV stands for human immunodeficiency virus. This term means several things: (a) It is a condition
that can only infect humans beings (H); (b) it compromises immune systems (I); and (c) it is a
virus (V), an infectious organism that invades living cells. Because HIV is a viral infection (as is the
common cold), it results from exposure to a pathogen. However, HIV is more threatening than a
cold virus because the human body is unable to fight it off. Once infected, people never recover,
even though they may be asymptomatic. And, as with other chronic diseases, they must live with
the condition throughout their lives.
Although our bodies have built-in mechanisms designed to fight disease, HIV attacks CD4-positive
T cells, which in human immunology is a type of white blood cell vital to fighting off infections and
foreign microbes. HIV launches its attack by first invading these cells so it can replicate; afterward,
it destroys the cells. Eventually, when a person’s CD4 cells fall below a specified level, the immune
system has been compromised. This criterion leads to a diagnosis of AIDS, which is an acronym for
acquired immunodeficiency syndrome.
The designation acquired means that the ons ...
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Juice ImagesSuperStockLearning Objectives1. Compare t.docx
1. Juice Images/SuperStock
Learning Objectives
1. Compare the basic biological distinctions of HIV and AIDS
2. Describe how an HIV/AIDS diagnosis affects different
individual, familial, and social domains
3. Understand the clinical and social implications of an
HIV/AIDS diagnosis during different stages
of the life cycle
4. Demonstrate an understanding of ART regimens and other
treatment methods
5. Understand the role of stigma and discrimination in
screening, treatment, and prevention
interventions
6. Identify the unique issues of HIV/AIDS management in
ambulatory care settings
7. Describe how an understanding of the ecology of HIV/AIDS
can improve individual, social,
and policy issues
Blood and Immune System
Disorders: HIV/AIDS
4
2. Tan tan/Imaginechina/Associated Press
CN
CT
CO_H
CO_NL
CO_CRD
atL80953_04_c04.indd 103 12/3/13 3:23 PM
CHAPTER 4Section 4.1 Introduction to HIV/AIDS
4.1 Introduction to HIV/AIDS
In June 1981, the U.S. Centers for Disease Control and
Prevention (CDC) published a report on the clinical condition of
five young male homosexuals who all presented the same
unusual group of symptoms (CDC, 1981b). Although these
individuals had previously been healthy,
they were all diagnosed with Pneumocystis carinii pneumonia
(PCP), a rare condition associated
with a severely compromised immune system. Three weeks
later, another report from the CDC
documented 26 gay men in New York and California with
compromised immune systems from
both PCP and the cancer Kaposi sarcoma (CDC, 1981a).
Although initially given the acronym GRID
(gay-related immune deficiency, because of the sexuality of the
men in these initial cases), this
disease eventually came to be known by the acronym
HIV/AIDS.
3. Clinical Overview
HIV stands for human immunodeficiency virus. This term means
several things: (a) It is a condition
that can only infect humans beings (H); (b) it compromises
immune systems (I); and (c) it is a
virus (V), an infectious organism that invades living cells.
Because HIV is a viral infection (as is the
common cold), it results from exposure to a pathogen. However,
HIV is more threatening than a
cold virus because the human body is unable to fight it off.
Once infected, people never recover,
even though they may be asymptomatic. And, as with other
chronic diseases, they must live with
the condition throughout their lives.
Although our bodies have built-in mechanisms designed to fight
disease, HIV attacks CD4-positive
T cells, which in human immunology is a type of white blood
cell vital to fighting off infections and
foreign microbes. HIV launches its attack by first invading
these cells so it can replicate; afterward,
it destroys the cells. Eventually, when a person’s CD4 cells fall
below a specified level, the immune
system has been compromised. This criterion leads to a
diagnosis of AIDS, which is an acronym for
acquired immunodeficiency syndrome.
The designation acquired means that the onset of AIDS results
from viral exposure rather than
genetics. Exposure to the virus can consist of contact with the
blood or bodily fluid (e.g., semen)
of an infected individual. In practice, HIV/AIDS can be
acquired in the following ways:
• Through a blood transfusion from an infected blood source,
4. • By being stuck with a needle contaminated with HIV-infected
blood (which has
occurred in the health care setting),
• Through various forms of sexual activity (e.g., anal, vaginal,
and oral sex),
• Via contact between an open wound on the skin of an infected
individual with
another individual’s open wound,
• In fetal transmission from mother to unborn child, and
• Through transmission from mother to child via breast milk
(Falvo, 2009).
Given these methods of exposure, the principal risk factors are
sexual encounters with multiple
partners (especially male to male; CDC, 2012c), injection drug
use, and mother-to-child exposure.
The high-risk groups, and the potential ways the disease can be
spread, were determined within
2 years of the first reported cases (De Cock, Jaffe, & Curran,
2011). Although initially diagnosed
among gay men (i.e., men who have sex with men) and injection
drug users, HIV/AIDS has also
spread into the heterosexual population, and women now make
up the majority of heterosexually
transmitted cases (CDC, 2012c). Finally, syndrome refers to a
collection of signs and symptoms that
is broader in scope than a single disease. In other words, it
refers to a cluster of related conditions.
H1_intro
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CHAPTER 4Section 4.1 Introduction to HIV/AIDS
HIV/AIDS progresses in three stages: from acute infection with
the HIV virus, to clinical latency, to
the syndrome of AIDS (U.S. Department of Health and Human
Services [HHS], 2012d). The initial
acute infection stage corresponds to the period shortly after
initial infection. Within 2 to 4 weeks,
patients experience symptoms that many have described as the
“worst flu ever.” Clinically, this is
known as the acute retroviral syndrome (ARS), or primary HIV
infection. During this phase, the
virus reproduces rapidly by destroying CD4 cells until the
body’s immune system begins to fight
back. The level of the virus at any given point is referred to as
the viral load, measured in serum
copies/mL. Eventually, the struggle between the virus and the
body’s immune system stabilizes.
After this stage, CD4 levels may start to rise again (but not
necessarily to preinfection levels) while
the rate of HIV production slows. This signals the transition to
the second phase, clinical latency,
when a person still harbors the virus but may be asymptomatic.
6. Clinically, during this relatively
stable latency period, the viral load fluctuates around a
relatively stable value known as the viral
set point: the average viral load between two specified end
points (Kelley, Barbour, & Hecht,
2007). In general, patients with a higher viral set point will
progress to the AIDS stage of their dis-
ease sooner. Without medical intervention, this latency phase
can last for 8 years or longer (HHS,
2009a), with a median incubation period of just under 10 years
(Bacchetti & Moss, 1989).
In the third and final stage of the disease, viral levels start to
rise again, while CD4 cells decline.
When the number of CD4 cells falls below 200 cells per cubic
millimeter (mm3) of blood, this is
known as virologic failure and can occur for a number of
reasons, including drug resistance, drug
toxicity, or a patient’s failure to adhere to the treatment regime
(HHS, 2013e). This threshold
level of 200 cells/mm3 is the clinical definition for the onset of
AIDS. Because of the compromised
immune system, the patient will then be at higher risk for
opportunistic infections (an infection
that could be life-threatening) as well as other diseases. In the
absence of medical interventions,
people with AIDS live about 3 years; after an opportunistic
infection, the patient’s life expectancy
drops to about 1 year.
From this description, we can see that it is not AIDS per se that
leads to death. Rather, mortality
derives from secondary infections or diseases that the patient’s
weakened immune system cannot
combat.
7. Historical Overview: From Terminal Acute Infection to
Manageable
Chronic Condition
When AIDS was first identified, the view had been forming for
decades that serious infectious
disease was on its way to permanent eradication, at least within
industrialized western society.
During the 1950s, the polio vaccine was developed, which
eventually eradicated this disabling
condition. In 1977, the last known case of naturally occurring
smallpox worldwide was reported in
Somalia. Infectious disease seemed to be relegated to the pages
of history.
This triumphal narrative was shattered by the appearance of
HIV/AIDS. As a result, the disease was
initially compared with the devastating infectious diseases of
the past; a 1987 newspaper article
prophesied that the death toll from AIDS “will dwarf such
earlier medical disasters as the Black
Plague, smallpox and typhoid” (“AIDS May Dwarf the Plague,”
1987). By the late 1980s, the appro-
priateness of comparing AIDS metaphorically to the plague was
debated by journalists (Kinsella,
1989), historians (Rosenberg, 1989), and literary commentators
(Sontag, 1989). In this view, AIDS
represented a fundamental break with the past: It reflected the
resurgence of virulent infectious
disease with lethal consequences, both for those infected and
for society at large. Given the initial
high mortality rates, these early perceptions seemed well
founded.
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8. CHAPTER 4Section 4.1 Introduction to HIV/AIDS
But unlike plague or cholera, HIV/AIDS did not appear to be an
isolated outbreak (or epidemic)
that struck and then receded in the United States. Instead, the
number of infected cases grew
yearly. By 1995, the number of reported cases in the United
States had reached one-half million
(Osmond, 2003). Thereafter, the number of both new cases and
deaths began to decline. Table
4.1 demonstrates the growth of the HIV/AIDS, from 1981 to
2001. Primarily, this decline resulted
from the introduction of antiretroviral therapy (ART, also
known as highly active antiretroviral
therapy, or HAART) drugs that were to greatly prolong the
latency period of the disease. In 1987,
the first drug for AIDS treatment, azidothymidine (AZT, also
known as zidovudine, now abbrevi-
ated as ZVD) was approved. In 1995, a new, less toxic class of
AIDS drugs, protease inhibitors, had
reached the market. By the first decade of the 21st century,
more accurate screening tests had
been developed, and the first generic version of an ART drug
(AZT) was introduced (see Figure
4.1). AIDS researchers have long dreamed of producing an
AIDS vaccine. However, the most recent
vaccine trials have been halted because of inconclusive results
(McNeil, 2013). Figure 4.1 shows
the timeline of key events in the history of treating HIV/AIDS.
Table 4.1: AIDS cases and deaths, by year and age group, 1981–
2001, United States
Adults/adolescents Children (,13 years old)
11. CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
Better Understand HIV/AIDS
Figure 4.1: Timeline of key events in the history of treating
HIV/AIDS
Since the 1980s, there have been several landmarks in the
development of identification, treatment, and
prevention techniques for HIV/AIDS.
Source: U.S. Food and Drug Administration (2012b).
Timeline/History. Retrieved from
http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvo
cates
/HIVandAIDSActivities/ucm117935.htm
4.2 Using Bronfenbrenner’s Model to Better Understand
HIV/AIDS
In the 30-plus years of the epidemic, the framework for dealing
with HIV/AIDS has moved from crisis management to chronic
disease management (Fee & Fox, 1992). Using Bronfenbren-
ner’s ecological model of human development (see Chapter 1),
we can make a few related
generalizations:
• At an individual (micro) level, HIV/AIDS has become less an
issue of dying in the prime
of life. Rather, the focus has turned to managing the attendant
health issues associ-
ated with being HIV-positive into middle and old age.
• At the meso level of work and school, prominent concerns are
less often personal
12. social stigma (although this has not been completely banished)
and more often how
to accommodate HIV-positive individuals in light of the
nondiscrimination require-
ments of the Americans with Disabilities Act of 1990 (ADA).
• First report of AIDS
• Identification as a retrovirus
• Approval of the first immune assay test
• Approval of AZT, the first drug to treat AIDS
• First drugs for treatment and prevention of certain
opportunistic infections
• Mechanism for expanded access to promising therapies prior
to approval
1981–
1990
• National Task Force on AIDS Drug Development
• Expanded access to preapproved HIV therapies
• Approval of several new drugs
• Accelerated approval of therapies based on surrogate market
activity
• First non-blood based collection system to test for HIV
• Female condom approved, providing women with a barrier
product
1991–
1994
• Approval of the first protease inhibitor
• First home-used AIDS test kit
• First antigen test kit to screen blood donors for HIV-1
• First viral load test
1995–
13. 1999
• New formulations and combinations of medications approved
to reduce pill burden
• HIV genotyping approved to improve treatment outcomes
• First nucleic acid test for plasma screening
• First rapid HIV test for use in outreach settings
• First fusion inhibitor for treatment of HIV/AIDS
• First generic version of an HIV therapeutic agent approved
2000–
2009
• New diagnostic assays
• Drug approvals that added more options to treatment regimens
• Generic drug approvals that help lower the cost of treatment
• Labeling changes to improve management of safety in treating
HIV
2010–
2011
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http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvo
cates/HIVandAIDSActivities/ucm117935.htm
CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
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• At the macro level of national and international policy, goals
are less about imposing
quarantines and other emergency public health measures to
14. combat an imminent dis-
ease threat. Instead, public policy focuses on the best way to
spend private and public
funds to manage long-term AIDS treatments and research in
light of other budget
priorities.
In the United States, HIV/AIDS has been grafted onto the
institutional infrastructure of the health
care system. Although the system was created to deal primarily
with acute episodes of disease
(see Chapter 10, “The U.S. Health Care System and Chronic
Illness and Disability”), health care has
had to deal with the epidemiological transition (see Chapter 2)
to chronic disease as the leading
cause of morbidity and mortality. This mismatch between how
the system was designed and the
epidemiological realities is vividly on display in the rising costs
of dealing with HIV-positive individ-
uals who will have to manage their chronic conditions for
decades. Despite the initial perception,
HIV/AIDS has proven to be more like cancer than plague.
Web Field Trip
For a timeline of key events in the AIDS epidemic, visit CNN’s
website (http://www.cnn.com/) and
search for “30 Years of AIDS Moments to Remember” by
Jacque Wilson and Matt Barringer. Also search
for and review the story of Edmund White, a gay man (“HIV in
the ‘80s: People didn’t want to kiss you
on the cheek” by Elizabeth Landau), and Linda Scruggs, a Black
heterosexual woman (“AIDS in the ‘90s:
I wasn’t going to die miserably” by Elizabeth Landau).
Critical Thinking Questions
15. 1. How do these individuals’ life stories illustrate the sense of
fear and panic associated with an
AIDS diagnosis? How do both these individuals draw on
spiritual resources in dealing with the
experience of disease at the micro level?
2. In what way do these stories illustrate the relevance of the
biopsychosocial model of disease?
Micro Perspectives
As the stories of White and Scruggs illustrate, the diagnosis of
HIV/AIDS produces anxiety and
stress at the individual level. Beyond the individual with HIV,
family members are also affected,
but the “AIDS in the family” story has changed dramatically in
30 years.
Personal Psychological and Physical Effects
The initial sufferers who were diagnosed with HIV/AIDS in the
1980s faced imminent, premature
death. As a character in a 1985 play about AIDS put it, “Do you
think they’ll find a cure before
I. . . . How strange that sounds when you say it out loud for the
first time” (Kramer & Papp, as cited
in Harden, 2012, p. 125). Even though being HIV-positive has
since become an ongoing reality,
individuals still have to deal with having an incurable
condition. They must live with the knowl-
edge that it almost inevitably becomes debilitating, and
eventually, is likely to precipitate death.
Psychologically, the most common symptoms that result from
this realization include depression,
anxiety, or panic disorder (Falvo, 2009). Furthermore, empirical
studies have shown that experi-
encing the stigma associated with being HIV-positive adds to
the negative psychological effects
16. (Stutterheim et al., 2009). Because of these stressors, many
people with HIV/AIDS develop prob-
lems with substance abuse or dependence.
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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
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As a chronic disease, HIV/AIDS requires ongoing management
by the patient, principally a compli-
cated, daily drug regimen of ART drugs. This treatment holds
the disease in check by preventing
viral replication (copying). The choice of drugs is carefully
tailored to the patient’s virus type (cer-
tain mutations can be resistant to certain drugs) and to his or
her lifestyle (e.g., how many pills can
fit into the daily routine). More so than with simpler forms of
medication, ART drugs come with
numerous potential side effects (see Table 4.2) and toxicity
issues.
Table 4.2: Select long- and short-term side effects of
antiretroviral therapy
Short-term side effects Long-term side effects
Anemia Lipodystrophy (fat redistribution, e.g., losing fat in the
face and
extremities and gaining it in the abdomen)
Diarrhea Insulin resistance (an early stage of diabetes)
17. Dry mouth Lipid abnormalities (dyslipidemia, e.g., increases in
cholesterol and
triglycerides)
Fatigue Decrease in bone density
Headaches Lactic acidosis (buildup of the waste product lactate,
which can lead to
more serious problems such as liver failure)
Nausea and vomiting
Pain and nerve problems
(neuropathy)
Rash
Weight loss
Sources: HHS. (2009b). Overview of HIV Treatments.
HIV/AIDS Basics: Just diagnosed with HIV/AIDS: Treatment
Options. Retrieved
from http://aids.gov/hiv-aids-basics/just-diagnosed-with-hiv-
aids/treatment-options/overview-of-hiv-treatments/; U.S.
Department
of Veterans Affairs. (2012). Side effects guide. Retrieved from
http://www.hiv.va.gov/patient/side-effects-guide/index.asp.
Familial and Social Relationships
When AIDS first appeared, it was principally a disease of gay
men and injection drug users. Because
of negative attitudes toward homosexuality and drug use, these
individuals might already have
been estranged from their family of origin, even prior to their
diagnosis. Then, before the ability
to test the blood supply became possible in 1985, some people
18. with hemophilia contracted AIDS
through blood transfusions. As a result, hemophiliacs were seen
as the innocent victims of AIDS,
whereas homosexuals and injection drug users were seen as
personally responsible for contract-
ing the disease by choosing to engage in high-risk behaviors.
For example, many of the original
men who contracted HIV/AIDS in New York City in the 1980s
had multiple sexual partners during
a 6-month period, which partly explains the initial rapid spread
of the epidemic (CDC, 1981b).
For many, those in the former (“victim”) category were seen as
objects of sympathy; in contrast,
those in the latter (“responsible”) category became the objects
of stigma and discrimination by
their family members and society at large. This view was
reinforced by the media at the time: Gay
men with HIV were often shown alone, but hemophiliacs with
HIV were often portrayed in a home
setting surrounded by other family members (Cook & Colby,
1992; see the discussion of stigma in
the Sociocultural and Policy Issues section in this chapter).
Now that HIV/AIDS has moved into the heterosexual
population, it can disrupt marriages between
men and women—especially when one partner knowingly
infects the other without telling him or
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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
19. Better Understand HIV/AIDS
her. In some instances, criminal penalties can be involved. View
the video of Renee in the “Faces
of HIV” website (http://www.wemakethechange.com/faces/), in
which a woman describes how
she managed to get her former husband to confess that he
knowingly infected her. As a result, he
was convicted of a felony in the state of Florida.
Meso Perspectives
At the meso level of institutional life, documented evidence
shows discrimination against AIDS
patients during the early years of the epidemic. Discrimination
involved practices such as denying
HIV-positive children access to school, refusing to rent or sell
property to an infected individual,
and refusing to provide personal services (Gostin, 1992).
Although children who contracted AIDS
through a blood transfusion may not have been personally
responsible, fear of interacting with
these individuals was widespread during the early years of the
AIDS epidemic. One particularly
famous example, from 1985, involved the Indiana teenager Ryan
White, who was denied the right
to attend public school. In 1986, three hemophiliac brothers
were similarly banned from attend-
ing a public school in Florida; when courts ruled that they
should be permitted to attend classes,
their home was burned down (Harden, 2012). In the same year,
the U.S. Department of Justice
issued a decision declaring that it was permissible (on public
health grounds) for employers to bar
HIV-positive individuals from work (Brandt, 1988). It has long
been recognized that the state has
the power to restrict individual liberty to prevent the spread of
20. infectious disease (e.g., through
quarantine). However, these harsh actions also illustrate the
widespread social stigma associated
with AIDS in the years before life-sustaining therapies were
developed (Brandt, 1988).
Antidiscrimination Measures
By the late 1980s, however, discriminatory practices had been
formally condemned by myriad
official government reports (Gostin, 1992). Also, after the
passage of the ADA in 1990, a consen-
sus soon emerged among legal
experts that HIV/AIDS should
qualify as a covered disability.
Then, in 1996, Congress passed
the Health Insurance Portability
and Accountability Act (HIPAA),
which ensured greater privacy for
an individual’s medical records.
Consequently, individuals were
no longer required to reveal to
their employers their HIV status.
In 1998, the U.S. Supreme Court
ruled that, under the ADA, the
plaintiff (Sidney Abbott) could
not be denied dental care simply
because she was an asymptom-
atic HIV-positive individual (Brag-
don v. Abbott, 1998) And in 2008,
the ADA was amended to make
it easier for HIV/AIDS patients to
claim coverage under the act. In
J. Scott Applewhite /Associated Press
President Clinton signed the Health Insurance Portability and
21. Accountability Act into law in 1996.
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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
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short, although individual instances of personal prejudice still
affect HIV-positive individuals, a body
of legal precedents has held that individuals cannot be
discriminated against in work environments
or in the provision of services based on their HIV status. To
examine the court’s reasoning, see the
full text of Bragdon v. Abbott, found at Cornell’s Legal
Information Institute website: http://www
.law.cornell.edu/supct/html/97-156.ZO.html.
Privacy
The decision of whether to reveal one’s HIV-positive status at
work remains a consideration that
each person must deal with individually. As another part of the
psychosocial management of hav-
ing a chronic condition, a person must weigh the potential
psychological benefits (coworker sup-
port) versus the costs (potential prejudice). Generally, it is
advised to think carefully about this
decision before proceeding with disclosure and to carefully
consider to whom this information
will be revealed. Many employers provide Employee Assistance
Programs (EAPs) to help workers
discuss sensitive issues in a confidential environment (HHS,
2009a).
22. Health Care Coverage
As noted earlier, HIV/AIDS was transformed into a chronic
condition mainly by the development
of antiretroviral drugs, which must be taken daily. So, in
addition to biological side effects and
potential psychological stigma, patients with HIV must face the
cost of their treatment, which can
become very expensive. At present, the suggested wholesale
price of only a few of the antiretrovi-
ral drugs is less than $500 per month, and some cost well over
thousands of dollars (HHS, 2013c).
However, through the efforts of various nonprofit organizations
(e.g., the Clinton Health Access
Initiative and the Bill and Melinda Gates Foundation), these
drugs are being made available in the
world’s poorest countries, where HIV/AIDS is highly prevalent,
at a fraction of the wholesale price
(McNeil, 2011).
In general, most HIV-positive individuals rely on some external
source (either government or
private) to cover their drug and other medical bills:
• Medicaid (the joint federal and state program designed to
cover the medical bills of
low-income people);
• Medicare (the federal program to cover the medical bills of
seniors and those with
disabilities);
• The Ryan White HIV/AIDS Program (a federal program that
provides funds specifically
targeted to HIV-positive patients with insufficient resources to
cover their medical
expenses);
23. • Private insurance (patients might be denied coverage because
being HIV-positive is
considered a preexisting condition); and
• Private charities and grant-making organizations (e.g., the
Clinton Foundation).
In other words, as for all U.S. residents, HIV patients have to
cobble together health insurance
coverage because the U.S. health care delivery system is
fragmented.
In the next several years (starting in 2014), the Patient
Protection and Affordable Care Act of
2010 (ACA), also known as “Obamacare,” is planned to be fully
implemented (for more detailed
discussion, see Chapter 10). Already, in certain states, people in
high-risk pools are being insured
despite their costly-to-treat medical conditions. The ACA’s goal
is to give many Americans (includ-
ing HIV-positive ones) access to affordable health insurance by
expanding Medicaid and requiring
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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
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private insurers to offer coverage regardless of preexisting
conditions. Although such policies
will lead to an increase in the number of covered individuals,
24. the exact percentage of Americans
who will eventually be covered is uncertain, because the U.S.
Supreme Court has held that states
are not required to expand their Medicaid programs. Also, large
corporate employers will not be
required to cover their employees until at least 2015; in other
words, much about the law is still in
flux. These uncertainties aside, the fact that HIV patients stand
to benefit from this health reform
initiative underscores how HIV/AIDS has become part of the
broader structure of the U.S. health
care system. This brings us to the macro perspectives on this
topic.
Macro Perspectives
As we saw from the discussion of the ADA and other legal
developments, in the second decade of
the 21st century, HIV/AIDS became an integral part of national
health care policy. In July 2010, the
White House issued “The National HIV/AIDS Strategy for the
United States,” which was designed
to be a “coordinated national response to the HIV epidemic”:
The United States will become a place where new HIV
infections are rare and
when they do occur, every person, regardless of age, gender,
race/ethnicity, sex-
ual orientation, gender identity or socio-economic circumstance,
will have unfet-
tered access to high quality, life-extending care, free from
stigma and discrimina-
tion. (Office of National AIDS Policy, 2010)
The strategy has three broad policy goals, as well as one
implementation goal:
25. • Reducing new HIV infections,
• Increasing access to care and improving health outcomes for
people living with HIV,
• Reducing HIV-related health disparities, and
• Achieving a more coordinated national response to the HIV
epidemic in the United
States (Office of National AIDS Policy, 2010).
By setting such broad, integrative goals, this strategy draws on
all features of the U.S. health care
system to manage HIV/AIDS. It defines HIV/AIDS as a problem
to be dealt with by the whole com-
munity using multiple approaches, ranging from educating
individuals on how to minimize risky
behaviors to funding biomedical research on vaccines and
microbicides. Also, it emphasizes that
“to successfully address HIV, we need more and better
community-level approaches that integrate
HIV prevention and care with more comprehensive responses to
social service needs” (Office of
National AIDS Policy, 2010, p. ix). In other words, although
characterized as a national strategy, the
report emphasizes that successful HIV/AIDS prevention and
treatment will rely on a combination
of micro-, meso-, and macro-level approaches.
Another aspect of U.S. government policy has been to fund
HIV/AIDS prevention and treatment
in other countries, especially Africa, where the majority of
cases now occur. Created by Presi-
dent George W. Bush in 2003, the President’s Emergency Plan
for AIDS Relief (PEPFAR) had strong
bipartisan congressional support. During its early years,
PEPFAR focused on emergency health
needs, such as setting up supply chains and preventing mother-
26. to-child transmission, by partner-
ing with both governmental and nongovernmental entities. Now,
as PEPFAR is starting its second
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CHAPTER 4Section 4.2 Using Bronfenbrenner’s Model to
Better Understand HIV/AIDS
decade, it is moving toward creating an “AIDS-free generation”
(U.S. Department of State, 2012,
p.4). In 2012, a U.S. Department of State report about PEPFAR
noted that its goal is “a shared
responsibility, requiring the commitment and leadership of
partner countries and reinforced with
support from donor nations, civil society, people living with
HIV, faith-based organizations, the
private sector, foundations and multilateral institutions” (U.S.
Department of State, 2012, p. 4).
Although international in focus, PEPFAR’s ultimate goal is
“country ownership,” that is, “the end
state in which partner countries lead, manage, coordinate and
over time increasingly finance the
efforts needed to achieve an AIDS-free generation” (U.S.
Department of State, 2012, p. 4-5).
Although the virus that causes AIDS is the same throughout the
world, poorer countries do not
have nearly as many resources as the United States to deal with
this disease. To counteract this
imbalance, the United States has contributed (through PEPFAR)
more than any other nation to
combat AIDS internationally (U.S. Department of State, 2012).
Because these countries do not
27. have adequate health care infrastructures (e.g., enough health
care providers for the size of the
population, effective drug delivery system), HIV/AIDS has
remained an acute, life-threatening dis-
ease in much of the developing world. But, thankfully, progress
is being made: In 2011, more than
8 million men, women, and children (primarily in Africa) were
receiving treatment for HIV/AIDS,
whereas in 2010, only 6.6 million were receiving treatment
(U.S. Department of State, 2012). This
comparison between the United States and the developing world
vividly illustrates the sociologi-
cal dimensions of illness: The same disease (from a biological
standpoint) can have radically differ-
ent outcomes depending on the social setting in which it is
introduced.
The change from acute infectious to chronic disease paradigm
can be seen even in the research
aspects of HIV/AIDS at the national level (e.g., the design of
clinical trials). A clinical trial is an
experiment performed on a group of individuals all suffering
from the same medical condition. At
the outset, they are randomly assigned either to a group that
receives an experimental therapy
or to a control group; after the clinical trial, the results are
compared to determine whether the
difference in outcomes is statistically significant (i.e., highly
unlikely to have occurred by random
chance). Historically, in clinical trials designed to test drugs for
treating infectious diseases, the
individuals assigned to the control group usually receive a
placebo (i.e., a therapy or drug with no
active ingredients). This model of a placebo-based control was
used to test the efficacy of AZT, the
first successful AIDS drug in the mid-1980s.
28. However, in clinical trials to test the efficacy of cancer
treatments, many researchers believe that
withholding a potentially useful therapy is unethical, because
cancer is a potentially fatal con-
dition. Consequently, comparative studies of therapy efficacy
are often designed using histori-
cal controls (i.e., data from earlier studies rather than current
patients from whom treatment
is actively withheld). The question of methodology for the AZT
clinical trial formed the basis for
congressional hearings on AIDS drug development held in July
1986 (Edgar & Rothman, 1991). As
a congressional hearing, the occasion served more as an
opportunity for each side to articulate
its views. However, it did publicly raise the macro-level issue
of the appropriate level of risk and
uncertainty when formulating biomedical research policy. That
is, are we willing to accept a higher
degree of uncertainty to facilitate more timely action? In May
1987, the Food and Drug Adminis-
tration (FDA) answered this question administratively by
issuing a new set of rules that permitted
the sale of new drugs for serious or life-threatening diseases
while the drugs are still undergoing
clinical trials (Edgar & Rothman, 1991).
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CHAPTER 4Section 4.3 HIV/AIDS Through the Life Span
4.3 HIV/AIDS Through the Life Span
When HIV/AIDS first appeared, its initial victims were
29. individuals in the prime of life—one aspect that made this
disease so shocking at a social and cultural level. Over time,
however, new cases emerged among individuals at different
stages of the life cycle.
Before the precise method of transmission was known, instances
of mother-to-child transmission
occurred. As knowledge of the disease grew, treatment became
available to prolong life, leading
to the emergence of older patients (e.g., 50 years old and older)
who were HIV positive. Now,
cases can be found at all stages in the life cycle. When we
analyze the factors that put individuals
at risk for HIV/AIDS at various ages, it becomes clear once
again that sociological and economic
factors are as important as biological considerations.
HIV-Positive Infants and Children
As noted, one of the major HIV/AIDS success stories has been
the comparatively small number
of new cases of annual perinatal infection. In 2006, the number
of perinatal HIV infections was
estimated at between 144 and 236 new cases (Branson et al.,
2006). By contrast, the number of
new adult cases annually in the United States is 50,000. For
more statistics, consult the National
Institute of Allergy and Infectious Diseases (NIAID, part of the
National Institutes of Health [NIH])
webpage on HIV/AIDS:
http://www.niaid.nih.gov/topics/hivaids/Pages/Default.aspx.
Most new
cases of childhood HIV infection occur in the inner cities,
where issues of poverty, illicit drug use,
and lack of adequate health care are serious problems. So it is
not surprising that these new cases
result primarily from inadequate health care: substandard
prenatal care, failure to test for HIV sta-
30. tus, and lack of appropriate public health measures to treat
underlying health issues and promote
drug prevention programs.
HIV infection can be detected in the newborn by 3 months of
age using various blood tests. Infants
who test positive follow two general patterns. Approximately
20% develop a serious disease within
the first year of life and die by age 4; the remaining 80% show
wide variation in the rate of disease
progression. Overall, these children tend to develop motor and
cognitive skills (e.g., crawling,
walking, talking) more slowly than their non-HIV-positive
counterparts. HIV-positive children are
also susceptible to opportunistic infections, such as PCP and
lymphocytic interstitial pneumonitis
(LIP), which do not occur in the same way or are rare in adults
(NIAID, 2008). Tragically, some
adolescents who became HIV-positive through perinatal
transmission have reached an age where
they can engage in sexual intercourse, which puts their partners
at risk for HIV infection (Tassi-
opoulos et al., 2013).
Prime of Life: The Latency Stage
After the initial flulike symptoms have subsided, HIV-positive
individuals may have no outward signs
of illness. This asymptomatic phase can last as long as 12 years
or more (see the NIAID webpage on
HIV/AIDS symptoms:
http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/Pages
/symptoms
.aspx). However, although asymptomatic, they can transmit the
virus through sexual intercourse or
sharing needles among drug users. It is this intermediate stage
that has been prolonged through
31. the introduction of ART. Even so, eventually the virus will start
to replicate and CD4 cells will begin
to decline, which will weaken the immune system, producing
AIDS.
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http://www.niaid.nih.gov/topics/hivaids/Pages/Default.aspx
http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/Pages
/symptoms.aspx
http://www.niaid.nih.gov/topics/HIVAIDS/Understanding/Pages
/symptoms.aspx
CHAPTER 4Section 4.3 HIV/AIDS Through the Life Span
Childbearing While HIV-Positive
Among HIV-positive women of childbearing age, the possibility
of perinatal or mother-to-child
transmission (MTCT) of the virus exists. Now that safeguards
have been established to protect the
blood supply (see AIDS and the Blood Supply later in this
chapter), MTCT is the principal means
by which children become infected. As the CDC has reported,
162 of 217 children diagnosed in
2010 (75%) acquired HIV through perinatal infection (CDC,
2013e). In terms of ethnicity, the same
prevalence patterns hold as for other forms of infection: The
majority are Blacks (63% in 2009),
followed by Hispanics/Latinos (22% in 2009), and lastly by
Whites (13% in 2009). The good news,
however, is that the incidence of perinatally acquired infection
has been declining across all three
ethnic groups. Among Blacks, it has fallen from 15.2 to 9.9 per
100,000 live births in the period
2007–2009; among Hispanics/Latinos in the same time period it
32. has fallen from 2.1 to 1.7 per
100,000 live births; and among Whites, it has fallen from 0.8 to
0.1 per 100,000 live births. Overall,
there has been more than a 90% decline in the number of
children perinatally infected since the
introduction of screening tests and ART in the mid-1990s. If
appropriate treatment and preventive
steps are taking prenatally, the chance of perinatal infection
drops to less than 1% (CDC, 2013a).
These impressive reductions have underscored the benefits of
universal HIV screening as a preven-
tion strategy. The CDC recommends that all pregnant women, as
a routine part of prenatal care,
be tested for HIV (Branson et al., 2006). In 1999, the Institute
of Medicine (IOM) recommended
the following measures for streamlining the HIV-testing process
to make it more common:
• Informing all pregnant women that an HIV test would be
performed and that they had
the option to decline it on an individual basis (opt-out
screening),
• Eliminating requirements for extensive pretest counseling, and
• Not requiring explicit written consent. (IOM, 1999)
Evidence shows that by making the test for HIV routine, less
stigma will be associated with the
procedure. As a result, more pregnant women will undergo
testing (Branson et al., 2006). A recent
survey of the literature reached similar conclusions: Universal
screening is both accurate and
more effective than targeted screening at identifying new cases
of HIV among pregnant women
(Chou et al., 2012).
33. A recent systematic review of the literature from clinical trials
and observational studies recon-
firmed the benefits of ART for both mother and child.
Specifically, ART was found to suppress viral
replication in the mother (inhibiting the transition from HIV to
AIDS), decrease infant mortality,
and reduce MTCT (Sturt, Dokubo, & Sint, 2010).
During pregnancy and postpartum, HIV can be transmitted from
mother to child in three ways: in
utero, during delivery, and from breast-feeding. In utero, the
chance of transmission can be signifi-
cantly reduced if the mother is taking an ART regime; during
birth, the baby should be delivered by
cesarean section if the mother has a viral load greater than
1,000 copies/mL (CDC, 2013a). After
birth, the mother should receive counseling not to breast-feed
her child or prechew the child’s
food. When these interventions are combined, the risk of MTCT
falls to 1% –2% (Sturt et al., 2010).
These results indicate that if a woman receives appropriate
prenatal care, being HIV-positive does
not keep her from going on with her life. Even so, the
increasing complexity that HIV-positive sta-
tus brings to pregnancy starkly illustrates the difficulties of
dealing with major personal life events
while managing a life-threatening, chronic illness.
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CHAPTER 4Section 4.3 HIV/AIDS Through the Life Span
But what if the woman’s partner is HIV-positive? It is still
34. possible for the couple to conceive a
child without passing the virus on to the infant. Sperm washing
or bleaching is a procedure that
effectively removes the infected semen from the sperm. The
sperm are then bathed in a synthetic
seminal fluid, allowing an HIV-positive man to have biological
children without fear of infecting
his partner or child with the virus. This process is yet another
example of how medical procedures
have helped transform HIV/AIDS into a chronic disease rather
than an acute health crisis.
HIV Leads to AIDS
Given the number of organs that can be affected as a result of
AIDS, this disease is clearly a major
contributor to both illness and disability. With the onset of
AIDS, according to NIAID (2009), the
following symptoms are common:
• Rapid weight loss
• Recurring fever or profuse night sweats
• Extreme and unexpected tiredness
• Prolonged swelling of the lymph glands in the armpits, groin,
or neck
• Diarrhea that lasts for more than a week
• Sores of the mouth, anus, or genitals
• Pneumonia
• Red, brown, pink, or purplish blotches on or under the skin or
inside the mouth, nose,
or eyelids
• Memory loss, depression, and other neurologic disorders
With the immune system significantly weakened, resulting
complications—neurological, pulmo-
nary, cardiac, gastrointestinal, and kidney—become the
35. proximate cause of death. Opportunistic
infections include cytomegalovirus and various types of
pneumonia.
Neurological Complications
One of the leading neurological complications (developed by
20% to 30% of patients) is AIDS
dementia complex. In this syndrome are found such symptoms
as decline in cognitive abilities,
lack of concentration, and memory loss. Also, because HIV
enters the central nervous system
early in the course of infection, patients are at risk for
developing neurological conditions such as
encephalitis (inflammation of the brain) or meningitis
(inflammation of the membrane surround-
ing the brain or spinal cord). Additional neurological problems
include headache, seizures, and
ataxia (impairment in muscle coordination; Falvo, 2009).
Pulmonary Complications
Pulmonary complications comprise the major opportunistic
infections associated with AIDS. As
a matter of fact, tuberculosis (TB) is the leading cause of death
among people with HIV infection
(CDC, 2013f). Although caused by a bacterium rather than a
virus, TB can exist in the body while
an individual is asymptomatic (latent TB infection). However,
individuals who are HIV-positive and
have latent TB infection are much more likely to progress to
active TB disease than those without
HIV. Consequently, the CDC recommends opt-out testing for
HIV in TB clinics. Likewise, to mini-
mize complications and infection of others, all people diagnosed
with HIV should be tested for
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36. CHAPTER 4Section 4.3 HIV/AIDS Through the Life Span
TB immediately, and those at risk of TB exposure should be
tested annually. The CDC has issued
extensive guidelines on the treatment of opportunistic infections
associated with HIV (Kaplan et
al., 2009). See
http://www.cdc.gov/hiv/resources/factsheets/hivtb.htm for an
overview of TB
and HIV coinfection. Go to
http://www.cdc.gov/tb/topic/TBHIVcoinfection/tbhiv_video.htm
for a
short video explanation.
Cardiac Complications
According to the American Heart Association (AHA), being
HIV-positive puts an individual at higher
risk for cardiovascular disease than other individuals. Although
it is hard to determine precisely
which factors contribute to this higher risk (e.g., long-term
exposure to the HIV virus or to ART),
people with HIV more frequently exhibit some of the following
risk factors for heart disease: high
triglycerides, not enough “good” cholesterol, chronic
inflammation of the arteries and veins, ath-
erosclerosis, a greater tendency to smoke cigarettes, and
diabetes (although the data are conflict-
ing on diabetes risk; AHA, 2012b). Although everyone should
be monitored for these risk factors
as part of normal patient care, HIV-positive individuals should
be monitored more closely because
of their heightened risk.
37. Cardiac complications associated with AIDS include pericarditis
(inflammation of the outer lining
of the heart), myocarditis (inflammation of the heart muscle),
and endocarditis (inflammation of
the inner lining of the heart). In addition to the disease itself,
the use of antiretroviral drugs mod-
estly increases an individual’s risk of having a heart attack
(Falvo, 2009).
Gastrointestinal Complications
AIDS patients can suffer from numerous gastrointestinal
complications. Specifically, they can suf-
fer from a painful yeast infection of the oral cavity
(candidiasis), which may be one of the first
visible indications (if a test for HIV has not been given) that a
person has AIDS. With advanced
HIV, an individual can develop inflammation of the esophagus,
which makes swallowing difficult.
Individuals can also develop hepatitis infection (which may lead
to cancer of the liver and death)
primarily through coinfection; about 80% of HIV individuals
who inject drugs also have the hep-
atitis C virus (CDC, 2013g). At the end of life, various
gastrointestinal infections can make eating
difficult, contributing to weight loss (Falvo, 2009) and overall
wasting (cachexia).
Kidney Complications
AIDS patients can suffer from kidney problems with varying
degrees of severity, from kidney stones
to acute renal failure. These conditions can derive from the HIV
directly affecting the kidney, an
opportunistic infection affecting the kidney, or the HIV
medications harming the kidney as a side
effect (Falvo, 2009). Specifically, the virus can damage the
tubules, parts of the kidneys that filter
38. body fluids and enable the discharge of waste. About 30% of
people with HIV have protein in the
urine, which indicates reabsorption problems with the kidneys
(AHA, 2012).
HIV Among the Elderly: Dying of AIDS or Old Age?
HIV infection has been growing among the older population. In
2000, patients older than age 50
accounted for approximately 15% of all AIDS cases in the
United States (Grabar, Weiss, & Costa-
gliola, 2006). In 2015, patients aged 50 years and older are
expected to account for more than
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http://www.cdc.gov/hiv/resources/factsheets/hivtb.htm
http://www.cdc.gov/tb/topic/TBHIVcoinfection/tbhiv_video.htm
CHAPTER 4Section 4.4 Treatment Approaches
50% of all cases in the United States (Kirk & Goetz, 2009).
This change in epidemiology derives
from two main factors: the increasing longevity of HIV-positive
individuals, and the increasing per-
centage of new cases of HIV disease among those who are
already more than 50 years old (about
10%). For those more than 50 years old who contract the
disease, the main risk factor is hetero-
sexual intercourse (Grabar et al., 2006). Demographically, the
same patterns apply as for younger
populations: The highest percentage of cases is found among
Blacks, followed by Latinos. Because
these groups often have less access to adequate health care, they
have shorter life expectancies
than Whites of similar age and HIV status (Colfax, 2012).
39. For myriad reasons, the prognosis for HIV patients aged 50
years and older is not as good as those
in younger age cohorts. Clinically, studies indicate that older
patients respond more poorly to ART
than do younger patients. Also, their CD4 cells do not recover
as much after initiating therapy as
they do for younger patients (Althoff et al., 2010). Also,
because these patients may suffer from
other chronic conditions associated with advancing age, these
may complicate the treatment for
HIV disease (e.g., dealing with drug interactions for multiple
diseases). For both social and clinical
reasons, AIDS can be initially misdiagnosed among older
patients. Many clinicians do not perceive
HIV/AIDS as a disease of the aged and thus do not recommend
that their older patients be tested
for it. In the clinic, many signs and symptoms of AIDS mimic
other medical conditions associated
with aging. Consequently, many older patients do not begin to
receive AIDS-specific treatment
until their disease has progressed (Blanco et al., 2010).
Evidence shows that HIV-positive individuals are at greater risk
of age-related illness, specifically
dementia, depression, insulin resistance, high lipids (e.g.,
cholesterol, triglycerides), and infec-
tions (HHS, 2010a). Also, being HIV-positive can induce
premature aging by putting individuals
at risk for contracting typical age-related illnesses at earlier
ages, such as cardiovascular, bone,
kidney, liver, and lung diseases, as well as many cancers (Fauci,
Hodes, & Whitescarver, 2010).
In contemporary biomedical research, these comorbidities
associated with aging are now the
subject of ongoing clinical studies. Many studies are looking for
40. treatments to reduce chronic
inflammation and chronic immune activation, which appear to
be associated with the process of
accelerated aging (Aberg, 2012). To view a panel discussion on
the field of HIV and aging, go to
http://www.thebodypro.com/content/71358/croi-2013-research-
on-aging-and-hiv-video.html
4.4 Treatment Approaches
Although they can prolong life, ART regimens are complex.
They require that patients take a daily “cocktail” of three
different antiretroviral drugs from two of the five different
classes of HIV drugs. Each class of drug interferes with viral
replication in a unique way.
This multidrug regimen not only maximizes the effort at
controlling the virus but also guards
against drug resistance. Because HIV can mutate, there is less
likelihood of drug resistance if a
multipronged approach is used. As in any major treatment
decision, the physician and the patient
should first discuss the risks and benefits of the procedure. In
the case of ART, such a discussion
is necessary not only to initiate treatment but also to ensure that
patients understand they will
have to take some combination of these drugs for the rest of
their lives. This scenario illustrates
how social management is necessary (on the part of the patient
as well as the physician) in deal-
ing with HIV/AIDS.
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http://www.thebodypro.com/content/71358/croi-2013-research-
on-aging-and-hiv-video.html
41. CHAPTER 4Section 4.4 Treatment Approaches
ART Drug Classes
The five classes of drugs are as follows:
• Nucleoside/nucleotide reverse transcriptase inhibitors
(NRTIs),
• Nonnucleoside reverse transcriptase inhibitors (NNRTIs),
• Protease inhibitors (PIs),
• Entry/fusion inhibitors, and
• Integrase inhibitors.
Each drug class has its own mechanism of action. NRTIs block
the ability of HIV to replicate by
altering the virus’s genetic material so that a crucial enzyme
(reverse transcriptase) cannot func-
tion properly. NNRTIs also block the functioning of the
enzyme; however, they target the enzyme
itself rather than the genetic material. PIs block the ability of
HIV to cut the long strands of genetic
material that it makes (protease) into smaller strands, a
necessary step in order for the virus to
replicate (make copies). Entry/fusion inhibitors prevent the
virus from invading the CD4 cells by
acting on the receptor sites on cells where the virus “docks.”
Finally, integrase inhibitors acts on
the enzyme integrase, which the virus needs to add its DNA to
that of CD4 cells (HHS, 2009b).
Initial therapy usually consists of two NRTIs and a third agent
selected from among NNRTIs, pro-
tease inhibitors, integrase inhibitors, or (rarely) an entry/fusion
inhibitor that blocks the chemo-
kine receptor 5 (Thompson et al., 2012). Within the AIDS
research community, recent consensus
42. holds that HIV drug resistance testing should be done at the
outset of care. The recommended
procedure is genotypic testing to ensure that the combination of
drugs is tailored to the specific
patients (HHS, 2013a). Over time, the ART regimen may have
to be modified because of drug resis-
tance brought on by evolutionary mutations in the virus
(Goldberg, Siliciano, & Jacobs, 2012). This
aspect of treatment illustrates, once again, how HIV/AIDS has
become a chronic condition that
much be managed through continual updates over the patient’s
life span.
Fortunately, single-pill dosing of some ART regimens has been
developed, which promises to help
with patient compliance. Two three-drug combinations have
been approved so far: Atripla, in
2006, and Complera, in 2011. A four-drug pill (Gilead Sciences,
Inc.’s Stribil, formerly known as
“Quad”) received approval in May 2013 for newly diagnosed
patients. One drawback of the new
medicines is their premium price (the cost of Stribil is estimated
to be roughly $29,000 per year),
and of course, HIV patients must stay on ART for life (U.S.
Department of Health and Human Ser-
vices, 2012a).
Timing Treatment
When to begin treatment has been a matter of debate among
scientists. The issue turns on the
tradeoff between the potential toxicities from long-term
exposure vis-à-vis the potential thera-
peutic benefits from earlier treatment. One comparative analysis
from multiple cohort studies
indicated that when a patient’s CD4 cell count falls to 350
cells/mm3, this “should be the minimum
43. threshold for initiation of antiretroviral therapy” (When to Start
Consortium et al., 2009, p. 1361).
However, recent findings suggest that all patients who receive
earlier treatment might benefit in
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CHAPTER 4Section 4.4 Treatment Approaches
the long run. As the most recent recommendations from the
International Antiviral Society–USA
panel has observed, “Evidence from clinical trials,
observational cohorts, and pathogenic studies
all point toward the health benefits of earlier ART. Potent and
tolerable treatment regimens now
make durable viral suppression possible for most persons
throughout the course of HIV infection”
(Thompson et al., 2012, p. 398). Here are the panel’s specific
recommendations:
1. Regardless of CD4 cell count, ART should be offered to all
patients;
2. Regardless of symptoms, ART should be offered during the
acute phase of primary HIV
infection;
3. For patients with opportunistic infections, ART should be
initiated (preferably) within 2
weeks of diagnosis;
4. Patients should be monitored every 3 months after the
initiation of therapy to deter-
mine whether a change in the combination of drug therapies is
44. warranted;
5. Once viral load has been suppressed for 1 year (with a stable
CD4 cell count), monitoring
can be extended to intervals of 6 months for patients who
adhere to the therapeutic
regime; and
6. Genotype testing for resistance should be performed on all
newly diagnosed cases and in
cases of confirmed virologic failure. (Thompson et al., 2012, p.
389, Box 1, p. 395, Box 3)
In addition to AIDS-specific drug therapy, successful treatment
ideally requires that patients
eat a well-balanced diet, take multivitamins, exercise, and avoid
smoking and excessive alcohol
use. Also, because HIV/AIDS is transmitted primarily through
sexual contact, it is imperative for
HIV-positive patients to talk openly about sexual issues with
both their health care provider and
their intimate partners. If someone knows of his or her partner’s
HIV-positive status and consents
to continued intimate relations, then it is possible to maintain
an active sex life in the context of a
monogamous relationship. However, even in these
circumstances, certain safety practices should
be strictly followed, especially the consistent and correct use of
a condom. But if an HIV patient
has multiple sexual partners, then that person should be tested
for sexually transmitted diseases
every 3 to 6 months. The point is not to engage in activities that
heighten the risk of contracting
other diseases (sexually transmitted or otherwise), because
these comorbidities will complicate
treatment, given the HIV-positive status.
45. Treatment as Prevention
Another key area of research is ART as prevention, or in
scientific parlance, preexposure prophy-
laxis. The FDA has approved a daily dose of the drug tenofovir
disoproxil fumarate plus emtricit-
abine (commonly known as TDF/FTC) for sexually active
individuals at risk for HIV infection (e.g.,
having multiple sexual partners). Clinical trials supported by
the CDC, NIH, and the University of
Washington have found that a daily regimen of these drugs
provides additional protection against
HIV infection (CDC, 2013k). However, these more
pharmacological approaches to prevention must
not be construed as being in lieu of more behaviorally oriented
strategies (e.g., having only one
sexual partner). This example illustrates, once again, how the
prevention of HIV must rely on the
biopsychosocial approach of combining biological and
sociological knowledge.
atL80953_04_c04.indd 120 12/3/13 3:23 PM
CHAPTER 4Section 4.5 Sociocultural and Policy Issues
4.5 Sociocultural and Policy Issues
Because of advances in available drug therapies, HIV/AIDS has
become a thoroughly man-ageable chronic disease, at least from
a therapeutic standpoint; however, the whole pic-ture reveals
that numerous obstacles persist, including psychosocial
concerns previously
addressed (e.g., stigma and discrimination) as well as the
universal availability of ART, which can
46. be highly expensive. Also, HIV/AIDS illustrates the nexus
between socioeconomic status (SES) and
disease. SES is a measure of a person’s social standing based on
a combination of education,
income, and occupation; those with more education, higher
income, and white-collar jobs are
higher in SES than those with less education, less income, and
blue-collar or manual labor jobs.
Those with lower SES tend to engage in riskier behaviors,
which increase their chances of becom-
ing HIV-positive; conversely, those who are HIV-positive often
face unemployment, which may
move them to a lower level of SES (American Psychological
Association, 2013). In other words, the
arrows of influence between SES and disease point both ways.
Stigma and Discrimination
Social stigma and discrimination—the constant shadows of the
HIV/AIDS epidemic—have been
repeatedly cited as reasons that screening, prevention, and
treatment efforts have been underuti-
lized by high-risk groups (e.g., men who have sex with men,
commercial sex workers) and those
who are already HIV-positive. As described by Goffman, stigma
can be defined as “an attribute
that is deeply discrediting” and that reduces the bearer “from a
whole and usual person to a
tainted, discounted one” (1963, as cited in Mahajan et al., 2008,
p. S70). Stigmatization is thus
intimately linked to notions of social deviance, which is defined
by each society differently. That
is, society tends to stigmatize those who are viewed as differing
from the “norm.” Based on this
interpretation, stigmatization may lead to harmful
discrimination (the word also means the act
of differentiating or distinguishing). Whereas stigmatization
47. refers to a perception of an individual
in negative terms because of difference, discrimination involves
a prejudicial outlook that often
leads to overt acts of unfair or unjust treatment (e.g., denial of
education, housing, or employ-
ment) based on a skewed view of a person. Consequently, to be
the object of harmful discrimina-
tion, a person must also be in a subordinate position within
society at large, relatively lacking in
power. This process has been characterized by Link and Phelan
as fourfold:
1. Individuals distinguish and label human differences;
2. Dominant cultural beliefs link labeled persons to undesirable
characteristics;
3. Labeled persons are placed in distinct categories to
accomplish some degree of separa-
tion of “us” from “them”; and
4. Labeled persons experience status loss and discrimination
that lead to unequal outcomes.
(as cited in Mahajan et al., 2008, p. S71)
According to Mahajan et al. (2008), this framework helps us to
define stigma and to assess future
policy interventions regarding HIV/AIDS. They observed that
such a framework is needed because
“there is . . . little consensus among policy-makers and
programme implementers about how best
to define, measure and diminish the phenomenon [of stigma]”
(Mahajan, 2008, p. S75). Also, they
noted that by focusing on sociological and structural factors
that contribute to prejudicial label-
ing, informed policymakers might reduce stigma in the future.
They recommended using reliable
48. atL80953_04_c04.indd 121 12/3/13 3:23 PM
CHAPTER 4Section 4.5 Sociocultural and Policy Issues
stigma measures (standard, uniform measurement criteria) when
evaluating programs to deal
with HIV/AIDS. At a procedural level, Mahajan et al.
recommended creating a social and legal
framework to promote HIV testing, implement “stigma
reduction interventions among healthcare
providers” (p. S76), and link provision of ART with community
stigma-reduction interventions. In
other words, they would treat the biological and psychosocial
(psychological and social) aspects
of the disease simultaneously.
Stigma and discrimination are especially cast into bold relief
when news and fictionalized accounts
of AIDS from the 1980s are examined. As Cook and Colby
(1992) have observed, early television
news stories visually contrasted gay men with hemophiliacs:
The gay men interviewed . . . were shown alone, either in public
places such as
parks and cafes or in doctors’ offices. In contrast, the
hemophiliacs appeared at
home surrounded by family members. The reports stressed the
fact that hemo-
philiacs could not adjust their behavior to avoid exposure. (p.
98)
In addition to saying that one group was responsible for
contracting AIDS but the other one
49. was not, the juxtaposition implicitly highlighted the
heterosexual lifestyle of the hemophiliacs
by portraying them within typical family settings. Similar
themes were presented in the 1985
made-for-television movie An Early Frost. In the movie, a gay
man (a White middle-class lawyer)
returns home to his family of origin to die of AIDS, where he is
eventually reconciled with all
his family members—including his father, who had been
repulsed by his son’s homosexuality. As
one critic has observed, the movie implicitly argues that “the
faux household of a gay couple is
revealed to be a fragile shelter that must give way to the
enduring arms of mother, father, sister,
and grandma” (Goldstein, 1992, p. 29) Although this film was a
pioneering, sympathetic portrayal
of an AIDS patient, it also subtly evoked the social stigma
surrounding people with AIDS when it
emerged in the 1980s.
From then until the second decade of the 21st century, both the
epidemiology of AIDS and Ameri-
can attitudes toward homosexuality have changed. (For a view
on AIDS and the changing attitudes
toward the family, see Levine, 1992.) Epidemiologically,
although men who have sex with men
still account for most new cases of AIDS (63% in 2010),
heterosexuals account for 25% of new
cases, and most cases of infection among women derive from
heterosexual contact or injection
drug use (CDC, 2013h). Also, the disease is more prevalent
among Blacks than any other ethnicity,
and Hispanics/Latinos are disproportionately affected.
Potentially, the fact that the disease is no
longer limited exclusively to one group (or sexual orientation)
has diluted some of the negative
50. perceptions associated with HIV in the past.
Web Field Trip
View a video of Tracey (an HIV-positive married heterosexual
woman) and other “Faces of HIV,” along
with their personal journal entries, at
http://www.wemakethechange.com/faces/
Critical Thinking Questions
1. How do these personal accounts support or contradict the
early views of HIV/AIDS?
2. How do they show ways in which the epidemic has changed
over the decades?
atL80953_04_c04.indd 122 12/3/13 3:23 PM
http://www.wemakethechange.com/faces/
CHAPTER 4Section 4.5 Sociocultural and Policy Issues
Celebrity Cases
Political activism among AIDS patients started early in the
epidemic (the AIDS Coalition to
Unleash Power, known as ACT UP, is a well-known example).
However, it was the emergence of
celebrities with AIDS that moved discussion of the disease into
the public spotlight. The revela-
tion in 1985 that actor Rock Hudson had AIDS served as a
catalyst. As an actor who embodied
heterosexual masculinity on-screen, the implication that he was
actually gay demonstrated that
both homosexuality and the risk of AIDS might be more
widespread than had been believed.
51. This bit of news galvanized public interest, and pol-
iticians took notice. As Harden has noted, it was
only a few weeks before Hudson died from the
disease, in the fall of 1985, that President Ronald
Reagan mentioned AIDS publicly for the first time.
Hudson’s death was one factor that led Congress to
appropriate more money for AIDS research under
the umbrella of NIAID, which was created in 1987
(Harden, 2012).
Prominent sports celebrities later publicly acknowl-
edged their HIV-positive status, including Olympic
athlete Greg Louganis, tennis star Arthur Ashe, and
basketball great Earvin “Magic” Johnson. Johnson’s
1991 revelation of his HIV-positive status was
another noteworthy cultural bellwether, because
he had contracted the virus through numerous het-
erosexual encounters. His story illustrated that the
disease was no longer confined to homosexuals and
injection drug users (Harden, 2012). Also, because
his diagnosis came after advances in ART, he was
able to illustrate the benefits of drug therapy and
be an example of living in long-term remission from
the disease.
AIDS and the Blood Supply
It is now known that HIV is transmitted through blood products.
However, this fact was still a
matter of speculation during the first years of the epidemic. In
1982, the uncertainty ended when
the CDC published a report that described an infant who
contracted AIDS after receiving a blood
transfusion (Harden, 2012). At the time, most blood donations
were voluntary, and plasma (an
ingredient in blood needed by hemophiliacs) was often pooled
from multiple donors. But as we
52. now know, only one donor need be infected to contaminate the
entire pooled source (Donegan,
2003). The emergence of AIDS required changing the process of
collecting blood.
Damian Dovarganes/Associated Press
Magic Johnson is a public example of a
person with HIV continuing to live a full life.
atL80953_04_c04.indd 123 12/3/13 3:23 PM
CHAPTER 4Section 4.5 Sociocultural and Policy Issues
The issue of how to protect the blood supply proved contentious
(Harden, 2012). On January 4,
1983, a meeting was held at the CDC in Atlanta to forge
consensus among stakeholders involved
with blood banking. For epidemiologists at the CDC, the need
for action was urgent—an infec-
tive agent already threatened the blood supply. But others raised
questions about the additional
costs and administrative burdens of running the blood screening
test and expressed concern that
excluding all gay donors would mean an inadequate blood donor
base. Although the original meet-
ing failed to reach consensus, the CDC issued a report in March
effectively prohibiting high-risk
groups (e.g., men who had sex with men in the preceding 5
years, intravenous drug abusers, and
commercial sex workers) from donating blood. This debate
illustrates how the societal response
to disease often raises thorny issues. Both sides in this dispute
had the best interest of society at
53. heart: ensuring an adequate supply of blood while making sure
that the blood available did not
risk the recipients’ health. See Table 4.3 for donor exclusion
criteria used by the CDC.
Table 4.3: Donor exclusion criteria for preventing HIV
transmission
CDC donor exclusion criteria regardless of HIV antibody test
results
Men who have had sex with another man in the preceding 5
years
Persons who report nonmedical intravenous, intramuscular, or
subcutaneous injection of drugs in the
preceding 5 years
Persons with hemophilia or related clotting disorders who have
received human-derived clotting factor
concentrates
Men and women who have engaged in sex in exchange for
money or drugs in the preceding 5 years
Persons who have had sex in the preceding 12 months with any
person described in items above or
with a person known or suspected to have HIV infection
Persons who have been exposed in the preceding 12 months to
known or suspected HIV-infected
blood through percutaneous inoculation or through contact with
an open wound, nonintact skin, or
mucous membrane
Inmates of correctional systems (this exclusion is to address
54. issues such as difficulties with informed
consent and increased prevalence of HIV in this population)
Source: CDC (1994). “Guidelines for preventing transmission of
human immunodeficiency virus through transplantation of
human tissue
and organs.” Mortality and Morbidity Weekly Report, 43(RR-8),
1-17. Retrieved from
http://www.cdc.gov/mmwr/preview/mmwrhtml
/00031670.htm.
By 1984, the belief that AIDS was caused by a retrovirus was
gaining widespread acceptance
within the scientific community (Harden, 2012). In that year,
heat treatment of blood products
(a process known to neutralize HIV) was required in the United
States. In 1985, the FDA approved
a test for HIV, which led to universal screening of blood
products in the United States; many other
countries began testing their blood products in this year as well
(Harden, 2012).
In addition to universal testing, HIV/AIDS has fundamentally
transformed how health profession-
als—especially those who might be exposed to a patient’s
blood—interact with patients. From
dentists to morticians to first responders, the wearing of gloves,
masks, and eye protection are
now standard (Harden, 2012). With the national blood supply
being regularly tested and high-risk
donors banned from giving blood, the risk of transmitting HIV
through a blood transfusion is now
extremely low.
atL80953_04_c04.indd 124 12/3/13 3:23 PM
55. http://www.cdc.gov/mmwr/preview/mmwrhtml/00031670.htm
http://www.cdc.gov/mmwr/preview/mmwrhtml/00031670.htm
CHAPTER 4Section 4.5 Sociocultural and Policy Issues
Disease Prevention at the Community Level
Just as the HIV-positive individual has a responsibility (at the
micro level) not to engage in risky
behavior, the community (at the meso level) likewise has a
responsibility to help prevent the
spread of HIV infection. In this public health context, the
national government has played a guid-
ing role. The CDC recommends that health departments and
community planning groups (CPGs)
collaborate to formulate HIV prevention strategies. Specifically,
the CDC recommends that CPGs
should support broad community participation in HIV
prevention strategies, identify priority HIV
prevention needs (a set of priority target populations and
interventions for each) in each juris-
diction, and ensure that HIV prevention resources target priority
populations and interventions
(CDC, 2003).
To achieve these objectives, the HIV prevention plan should
draw on relevant epidemiological infor-
mation on the incidence and prevalence of HIV within the
community, as well as assess the par-
ticular community service needs of the at-risk populations
within the community. In general, the
priority for prevention activities should be the current HIV-
positive population, followed by those
uninfected populations that are at highest risk (e.g., sexual
partners of HIV-positive individuals).
As recommended by the CDC, the CPG is required to develop at
56. least one such plan every 5 years.
The existence of such a plan can provide a benchmark so that
the success or failure of future HIV
prevention strategies can be more objectively assessed through
a process of program monitoring.
Case Study: The AIDS Memorial Quilt
Perhaps the most tangible cultural expression of HIV/
AIDS is the AIDS Memorial Quilt. Its origins date to
an annual march honoring gay San Francisco Super-
visor Harvey Milk and Mayor George Moscone, both
assassinated by a rival politician in 1978. In 1985, one
of the organizers, Cleve Jones, asked each marcher
to carry a placard with the names of friends and
loved ones who had died of AIDS. At the end of the
march, the placards were taped on the wall of the
San Francisco federal building, creating what looked
like a patchwork quilt of names. This public artwork
was the inspiration behind the creation of the AIDS
Memorial Quilt. In June 1987, Jones and others for-
mally established the NAMES Project Foundation to
manage the creation of the quilt.
Although produced in San Francisco, the quilt was a
truly national endeavor, as people from across the country sent
panels in memory of those who had
died. The inaugural display of the AIDS Memorial Quilt
occurred on the National Mall in Washington,
DC, on October 11, 1987. It subsequently toured cites in the
United States and Canada. The entire
AIDS Memorial Quilt was last displayed on the National Mall in
1996. This project has raised over $4
million for AIDS organizations, contains more than 48,000
names, and takes up 1.3 million square feet,
making it the largest community art project in the world (The
NAMES Project Foundation, 2011). For
57. more in-depth background and images, go to the official website
of this memorial project: http://www
.aidsquilt.org/. For more information about interactive, digital
exhibits of the AIDS Memorial Quilt and
its history, visit http://quilt2012.org/news/.
Manuel Balce Ceneta /Associated Press
The AIDS memorial quilt is a national community
art project created in remembrance of those
who have died of AIDS.
atL80953_04_c04.indd 125 12/3/13 3:23 PM
http://www.aidsquilt.org/
http://www.aidsquilt.org/
http://quilt2012.org/news/
CHAPTER 4Section 4.6 Managing HIV/AIDS in an Ambulatory
Care Setting
4.6 Managing HIV/AIDS in an Ambulatory Care Setting
As we have seen, the key to successfully managing HIV/AIDS
is early diagnosis and compli-ance with the ART regimen.
Therefore, the management of HIV in ambulatory care (i.e.,
outpatient) settings is crucial. In a survey of the literature on
this subject, Van Manen,
Laschinger, Stevenson, and Fothergill-Bourbonnais (2005)
noted considerable variation in how
HIV-infected people are treated in ambulatory care settings in
North America. They suggested that
there might also be variation in the patients’ level of care and,
thus, level of well-being.
58. Collaborative Care Approach
Despite this variation, Van Manen et al. noted that the
overarching philosophy at these centers
is a collaborative care model of treatment. They characterized
this approach as “a condition of
inclusionary care in which all care providers and receivers of
care are involved at the highest level
possible to achieve desired patient and family outcomes” (2005,
p. 51). This model was developed
at the San Francisco General Hospital during the early years of
the epidemic and has since been
widely adopted. Because it takes advantage of the social nature
of treatment decisions, the model
illustrates the necessity of the biopsychosocial approach when
treating patients with HIV/AIDS.
(For more on the biopsychosocial model of health care, see the
discussion in Chapter 1.)
Also, this holistic approach to disease management is evident in
the staffing arrangements in mul-
tidisciplinary ambulatory care settings. As Van Manen et al.
observed, “most clinics employ nurses,
physicians, social workers,” as well as (sometimes)
“psychologists, alcohol/drug abuse counselors,
dentists, chaplains, dietitians, oncologists, clinical pharmacists,
administrative personnel, speech
therapists, and alternative care providers” (2005, p. 51). The
management of HIV/AIDS is ideally a
collaborative effort.
Reaching Out to Subpopulations
Despite the efforts of multiple specialists, an empirical study
based on interviews of HIV patients
who received care in ambulatory settings indicated problems
with the care of certain subgroups:
Blacks, Latinos, women, injection drug users, heterosexuals, the
59. uninsured, and those with Med-
icaid coverage. Also, alarmingly, only about half of those
interviewed were complying with recom-
mended therapy (Shapiro et al., 1999).
Ultimately, Van Manen et al. (2005) summarized the challenges
of providing care in an ambulatory
setting as follows:
The challenge lies in the complexity and variability in disease
progression, the
multiple patient entry points into the care system, the multiple
roles and func-
tions of health care providers, and the discriminatory nature of
the disease block-
ing access to appropriate health care. (p. 55)
These words suggest that the major challenge of dealing with
HIV/AIDS in the 21st century is no
longer knowledge (what should be done) but action (ensuring
therapeutic compliance of the tar-
get population).
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CHAPTER 4Section 4.7 Conclusion: Toward an “Ecology of
Disease”
4.7 Conclusion: Toward an “Ecology of Disease”
The need for a combined approach to managing HIV/AIDS
reflects the complex ecology that characterizes how humans and
HIV interact. In general, the “ecology of disease” could be
characterized as an interaction among multiple factors:
60. • The microbe,
• The physical environment,
• The social environment, and
• The affected population
Because HIV/AIDS can be spread only person-to-person via
bodily fluids, the physical environment
is less important than for other infectious diseases. In contrast,
cholera is spread through drinking
water contaminated with the cholera bacillus, and malaria is
spread through mosquito bites. How-
ever, the microbe–population interaction is still important when
determining therapy. Because
the virus can mutate, an HIV-positive patient must be
continually retested and have the cocktail
ART regimen changed if evidence shows that a particular drug
combination is no longer working.
This again illustrates the need for continuing disease
management at both the individual and the
community level.
With HIV/AIDS, the social environment is crucial, as illustrated
at the micro, meso, and macro
levels. At the micro level, the individual has to deal not only
with the personal stress and anxiety
of having a chronic (incurable) disease but also with possible
stigmatization by family and friends.
This stigma may cause some people not to get tested for HIV,
which means that they might infect
others. At the meso level of work, school, and other institutions,
stigma can manifest in more
overt acts of discrimination (e.g., being terminated from a job,
denied admittance to school, or
denied access to housing). Although documented evidence
showed discrimination against HIV/
AIDS patients during the 1980s, these social realities have
61. given way to changes in cultural atti-
tudes as well as specific policy changes at the meso and macro
levels. These cultural changes have
led to greater acceptance of gay, lesbian, bisexual, and
transgender individuals, as seen in the
growing acceptance in recent years of gay marriage.
Policy developments have made opt-out testing the norm for
HIV, which has been shown to min-
imize the stigma of being tested and to increase the number of
people who receive testing. Also,
the passage of the ADA in 1990 and HIPAA in 1996 made it
unlawful to discriminate against indi-
viduals based on their HIV status. Specifically, the ADA grants
federal civil rights protection to
anyone who “has a physical or mental impairment that
substantially limits one or more major
life activities, including major bodily functions such as the
functions of the immune system.” (U.S.
Department of Justice, 2012, para. 2). If an individual with HIV
believes that he or she has been
discriminated against, then a complaint can be filed with the
Department of Justice for investiga-
tion. HIPAA ensures that employees are not required to reveal
their HIV status to their employers.
As a matter of fact, many employers now provide EAPs where
employees can discuss their HIV
status in a confidential environment.
These legal and policy changes illustrate that societal responses
can influence the spread of HIV
in the future. That is, the arrows of influence do not just go
from disease to society but also in
the other direction. As the potential for stigma and
discrimination lessens, more people might
get tested, and more cases of HIV might be diagnosed. Also, if
62. and when the ACA becomes fully
atL80953_04_c04.indd 127 12/3/13 3:23 PM
Chapter Summary CHAPTER 4
implemented, many HIV patients will have greater access to
ART, which has now been shown
to prolong life even if it cannot eradicate the disease. From
individual health care providers and
public health education campaigns, HIV-positive individuals
can receive information on how to
prevent the further spread of the virus. These developments
show that in order to successfully
manage and reduce the spread of HIV/AIDS, the ecology of
disease requires transformations in the
social environment just as much as it requires advances in
scientific knowledge.
Chapter Summary
During the last 30 years, HIV/AIDS has been transformed from
a terminal acute disease into a
chronic manageable condition. Consequently, HIV-positive
individuals now manage their condi-
tions over the course of years and decades rather than weeks or
months. This disease has acti-
vated a wide array of psychosocial issues that have to be dealt
with at the individual, community,
and societal levels. It has also become more politically charged
than any health crisis in recent
history.
When AIDS first appeared, the natural progression of the
63. disease (or even its etiology—that it is
caused by a virus) was unknown. Now, it is known that AIDS is
caused by a retrovirus, HIV, and that
it progresses in three stages: an acute primary infection (shortly
after initial exposure); a latency
period of several years; and a final stage in which the virus
destroys the patient’s immune system,
allowing other opportunistic infections to cause death. We now
realize that the first reported
cases of AIDS in the early 1980s were of individuals who had
already progressed to the third, ter-
minal stage.
Although researchers still hope that a vaccine will be
developed, the primary therapeutic success
has been the creation of an array of drugs that prevent the virus
from multiplying and thereby
destroying CD4 cells. Given the challenges of developing a
vaccine, prevention efforts have focused
on changing human behavior to curtail the disease’s spread.
Because HIV is spread through the
transmission of bodily fluids between individuals (e.g., blood,
semen, breast milk), the types of
behaviors that put an individual at risk are clear: blood
transfusions, sharing injection needles
among drug users, prenatal or perinatal MTCT (either in utero
or through breast-feeding after
birth), and various forms of sexual activity (anal sex conferring
the highest risk).
Each transmission method has spawned its prevention strategies.
In 1985, the HIV/AIDS-I anti-
body test became a requirement for testing each unit of donated
blood in the United States.
Consequently, today the risk that anyone will contract HIV from
receiving a blood transfusion is
64. low (CDC, 2006a). Similarly, the introduction of ART has
dramatically reduced MTCT of the virus
in the developed world. Even so, approximately 50,000 newly
diagnosed cases of HIV infection
occur in the United States annually, and the rate is increasing
among certain groups (e.g., men
who have sex with men, aged 13-24; CDC, 2012c). These
statistics suggest that targeted outreach
efforts must continue for those who engage in risky sexual
behavior and intravenous drug use.
These examples illustrate that dealing with HIV/AIDS (at the
macro level) requires a combination
of scientific research and public health planning to influence
human behavior, but these efforts
have had mixed success.
Increasingly, HIV/AIDS will be dealt with from the perspective
of chronic disease and disability,
because the patient population is aging. By 2015, it is estimated
that more than 50% of the people
who suffer from HIV/AIDS in the United States will be more
than 50 years old. In addition to being
atL80953_04_c04.indd 128 12/3/13 3:23 PM
Key Terms CHAPTER 4
acute retroviral syndrome (ARS) Also known
as primary HIV infection, a series of flulike
symptoms that occurs 2 to 4 weeks after initial
HIV infection.
ambulatory care An outpatient setting, such
as a hospital or clinic, where a patient receives
65. medical services in a single day and then
leaves.
American with Disabilities Act of 1990
(ADA) Legislation that sets out how employers
must make reasonable accommodations for
disabled workers, including those with HIV/
AIDS.
antiretroviral therapy (ART) A treatment
regimen that interferes with viral replication.
Since the mid-1990s, this has been the main
treatment for an asymptomatic HIV-positive
individual seeking to postpone the emergence
of AIDS. Also known as highly active antiretro-
viral therapy (see HAART).
collaborative care A philosophy of treatment
in which health care providers (e.g., physicians,
social workers, psychiatrists) share roles and
functions to create optimal outcomes for
patients and families.
community planning groups (CPGs) Repre-
sentatives from local communities that work
with health departments to reduce cases of
HIV/AIDS at the community level.
comorbidity The presence of disease in addi-
tion to the primary infection (e.g., with AIDS,
often tuberculosis or hepatitis C).
discrimination The process of differentiating
or distinguishing; also, a prejudicial outlook,
action, or treatment (e.g., denial of education,
housing, or employment) based on a stigmatiz-
66. ing view of a person.
HIV-positive and taking a daily regime of at least three
antiretroviral drugs, these individuals will
also begin to suffer from the other chronic conditions of aging,
including hypertension, heart dis-
ease, cancer, and stroke. These conditions often require daily
medications as well, which means
that the chronic disease management of older HIV/AIDS
patients will involve assessing increasingly
complex cases and multidrug interactions. Also, the premature
aging that occurs in HIV-positive
individuals could conceivably put greater financial strains on
the U.S. health care system, which
was designed to treat acute episodes rather than provide chronic
care (Thrall, 2005; see Chapter
10 on this paradox of health policy).
At the community level, continued public health planning
should ensure that at-risk populations
can be targeted to prevent the spread of the disease. Among
those already diagnosed, ambulatory
care centers need to continue working on multidisciplinary
approaches to prevent discrimination
against patients seeking treatment and to ensure drug
compliance among those already infected.
If diagnosed and treated, HIV/AIDS does not have to produce
disability during its long latency
period. However, it has clearly become a chronic condition that
must be dealt with at the individ-
ual level (through daily medication), at the intermediate level
(through antidiscrimination prac-
tices in the workplace and elsewhere), and at the national level
(throughout ongoing policy devel-
opment and research funding by various federal agencies).
67. Key Terms
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Key Terms CHAPTER 4
drug resistance The tendency of a drug to
become less effective over time as a particular
patient develops immunity to its effects; the
reason that HIV patients need to have their
drug regimens monitored and updated as
needed.
Employee Assistance Program (EAP) A confi-
dential service provided by some employers to
help employees make decisions about sensi-
tive issues that could affect work performance
(such as HIV status). The service is free and
is usually extended to an employee’s family
members.
epidemic A sudden increase in the frequency
(incidence) of a disease above its normal level
in a specified region, or among a specified
group of individuals; often associated with
psychological feelings of panic in the affected
population.
etiology The underlying cause of a disease or
abnormal condition.
health disparity The difference in overall
health status among groups of people based
68. on various factors such as race, socioeconomic
status, and geographical location.
Health Insurance Portability and Accountabil-
ity Act of 1996 (HIPAA) Legislation that pro-
tects individuals and families covered by group
health plans from being excluded from cover-
age for preexisting medical conditions when
employees change jobs or health plans. The
act also protects patients’ privacy in disclosure
of health information to third parties.
hemophilia A hereditary blood disorder in
which blood fails to clot normally.
highly active antiretroviral therapy (HAART)
See antiretroviral therapy.
mother-to-child transmission (MTCT) The
principal way for infants and children to
become HIV-positive; can be either prenatal or
perinatal (through breast-feeding, etc.).
opportunistic infection An infectious condition
that can become serious or life-threatening in
an individual with an impaired immune system.
opt-out screening A form of HIV screening
recommended by the CDC: the patient is
informed that testing for HIV will be performed
but may still elect to decline being tested for
this condition. Assent is presumed unless the
patient explicitly states otherwise.
outbreak A sudden increase in the frequency
(incidence) of a disease above its normal level
69. in a specified region, or among a specified
group of individuals. Similar to an epidemic,
but not as likely to produce a sense of psycho-
logical panic.
perinatal transmission The transmission of
HIV virus from mother to child during preg-
nancy, labor, delivery, or breast-feeding.
preexisting condition A medical condition
that, before implementation of the ACA, might
cause a private insurance company to deny
individual health coverage or charge much
higher rates for it.
preexposure prophylaxis Administering a
daily dose of a drug to at-risk individuals to
decrease the likelihood that they will become
HIV positive.
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Key Terms CHAPTER 4
psychosocial Involving both psychological and
social aspects of a subject; how social condi-
tions affect mental health.
retrovirus A group of viruses that carry their
genetic blueprint with them. They are called
retro because they operate in the reverse of
the normal cell processes. This unique charac-
teristic makes it possible for them to become a
permanent part of the cells they infect.
70. sexual orientation A long-term pattern of
behavior, attraction, emotions, and identity
toward a particular sex; includes heterosexual,
homosexual, and bisexual orientations. Some-
times described as sexual preference.
sexually transmitted disease (STD) Diseases
transmitted among sexual partners via inti-
mate contact.
socioeconomic status (SES) Measure based
on education, income, and occupation of an
individual’s economic position in society. SES
and disease have frequently been shown to be
correlated.
sperm washing or bleaching A procedure that
separates the infected semen from the sperm.
The sperm are then bathed in a synthetic semi-
nal fluid, allowing an HIV-positive man to have
biological children with reduced risk of infect-
ing his partner or child with the virus.
statistically significant A term used to char-
acterize the results of clinical trials and epide-
miological studies in which the difference in
outcomes between interventions are unlikely
to have occurred by random chance.
stigma A physical or social characteristic that
is labeled undesirable by a society.
syndrome A collection of signs and symptoms
that is broader in scope than a single disease;
a cluster of related conditions.
71. transgender A person whose sexual identity
as male or female does not match the biolog-
ical sex at birth. In some cases, an individual
undergoes surgical or hormonal therapy to
change his or her biological sexual characteris-
tics to those of the opposite sex.
viral load A measure of the density of virus
particles in the blood. In HIV, expressed as
serum copies/mL.
viral set point The mean viral load for an
HIV-positive patient during the latency phase
of the infection.
virologic failure A type of treatment failure
in which the virus reemerges because of drug
resistance, drug toxicity, or a patient’s non-
adherence to the treatment regime. Virologic
failure is associated with a viral load of more
than 200 cells/mL.
virus An organism that invades living cells,
which it requires in order to survive and repro-
duce, causing infectious disease (e.g., AIDS).
atL80953_04_c04.indd 131 12/4/13 8:57 AM
Critical Thinking and Discussion Questions CHAPTER 4
Critical Thinking and Discussion Questions
1. Discuss the implications of the transformation of HIV/AIDS
72. from a life-threatening infec-
tious to a long-term chronic condition. Do you think that this
makes it easier or harder to
deal with being HIV positive at a personal level? Do you think
it would make it easier or
harder to justify increased funding for AIDS research when it is
viewed as “just another”
chronic disease?
2. Consider the problems of disease management that an HIV-
positive individual faces.
How are these problems similar to those faced by others with
chronic conditions (e.g.,
diabetics)? How are the problems that an HIV-positive
individual must confront different
or unique?
3. Do you believe that there is still stigma associated with being
HIV positive? If you, as a
health care worker, witnessed a person being discriminated
against based on HIV status,
what would you do? Specifically, what resources could you
draw on to determine the
most appropriate course of action?
4. AIDS has been the subject of multiple plays, movies, and
television dramas. Why do
you think it has become such a catalyst for artistic expression?
Do you think that this is
related to the disease’s association with sexuality and death?
5. Suppose that you work as a member of a multidisciplinary
team that treats AIDS
patients. If your primary patient population consisted of
Medicaid patients and the unin-
sured, what types of issues—both medical and sociological—do
73. you believe you would
have to deal with on a regular basis? By contrast, if your team
worked primarily with
patients who had health insurance through an employer, do you
believe that you would
confront a different set of issues? What do your answers say
about the relationship
between socioeconomic status and AIDS as a sociological
phenomenon?
atL80953_04_c04.indd 132 12/3/13 3:23 PM
SOC313
Introduction to the Miller Family
Sarah (40 yrs) and Joe Miller (43 yrs) are at the center of this
family. [See the geneology maps (family
trees) for both Sarah and Joe below.] They are a middle aged
couple, married 21 years with three
children. Their children are Lucy (20 yrs), Josh (17 yrs), and
Abe (12 yrs). Lucy has had struggles with
substance abuse, along with having been diagnosed with bipolar
disorder. Josh has been sneaking away
with friends and smoking pot. Abe is a good student but has
started to act out recently.
Sarah’s parents are Donna and Manny Maldonado. Manny is
74. third generation Hispanic American from
Mexico. Donna has long suffered from her “moods” which is
mostly frustrating to Manny. He says it’s
“brujeria” (related to witches and magic). He worries that
someone puts spells on her. They both are
fluent in Spanish, Donna having learned as a result of being
with Manny and around his family. Sarah is
their oldest daughter followed by her brother, Mike (36) and
then sister Becky (33). Becky, divorced,
has one child, Elías (10 yrs old) who was recently diagnosed
with Leukemia. Mike is alone, having
recently suffered the loss of his companion of many years to
AIDS. He is secretly also concerned that he
might be HIV+.
Joe’s parents are Ella and John Miller. Ella is at the center of
our story as she has been trying to heal
herself from breast cancer through the use of a variety of
natural means. She was raised on a farm and
is not very trusting of “modern medicine.” Her husband, (Joe’s
father) John is of American Indian origin.
He uses a variety of traditional methods for health and well
being and as a means of banishing bad
spirits from their home. Ella’s mother passed away over ten
years ago but her father is still alive. He is