HIV in an Era of Biomedical Advances: Prevention
- Diana RowanDiana RowanDiana Rowan, PhD, MSW, LCSW, is an assistant professor of social work at The University of North Carolina at Charlotte. She is the principal investigator on a $1.1 million HIV prevention grant through the Minority AIDS Research Initiative (MARI) of the U.S. Centers for Disease Control and Prevention. She is developing and testing a new, participant-driven, culturally tailored online HIV prevention intervention for young Black gay/bisexual men and transwomen in North and South Carolina. She has done HIV-related research in sub-Saharan Africa and leads a social work study abroad course on NGOs in Malawi.
Since the start of the human immunodeficiency virus (HIV) pandemic, numerous biomedical advances have caused the social-work response to shift from management of a crisis to prevention of an incurable, but treatable chronic disease. About 1.3 million people in the United States and more than 33 million people worldwide are estimated to be living with HIV. Rates of incidence in impoverished, marginalized communities are highest, with the rates continuing to increase among young African American gay and bisexual men. Other communities at high risk are people who are incarcerated, engage in sex work or other kinds of exchange sex, and participate in risky injection-drug use. Minority groups are often impacted because of reduced access to quality medical care and HIV testing. Social workers in HIV prevention work are challenged to educate clients and communities on the sexual risk continuum, provide more interventions that are culturally tailored for disadvantaged at-risk groups, and implement evidence-based HIV prevention and testing programs worldwide. The National HIV/AIDS Strategy now provides structure to funding opportunities for HIV prevention programs, and there is disparate access to effective treatments worldwide for those living with HIV.
A Current Snapshot of HIV
Human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) is a global pandemic. Worldwide, it is estimated that 33.3 million people are living with HIV. In the United States, it is estimated that 1.3 million people are living with HIV and 20% of those are unaware they have it. Without access and adherence to proper care, often including the use of antiretroviral medications, HIV disease can progress to AIDS. To conquer the worldwide pandemic, public-health organizations, such as the World Health Organization (WHO) and the U.S. Centers for Disease Control and Prevention (CDC), are working to prevent HIV transmission and to get people tested so they are aware of their HIV status and can seek care if they are HIV positive.
HIV Prevention Levels and Factors
The three levels of prevention work were first conceptualized for application to prevention of diseases (Leavell & Clark, 1953), but they are often applied to prevention of other social and health issues not related to HIV. HIV prevention programs focus on one or more of these levels of prevention and it is essential for social workers to understand where on the prevention spectrum they should focus their efforts. Specifying the level of prevention is important for strategic development of policies, plans, and programs. Primary prevention is focused on preventing disease or harm and it engages in actions to prevent its initial occurrence. In HIV work, primary prevention programs focus on preventing HIV exposure to a group that engages in high-risk behaviors, such as unprotected sex or sharing of needles. Secondary prevention focuses on stopping or slowing down a disease or other harmful condition. In the case of HIV, secondary prevention workers focus on educating individuals who have already been diagnosed with HIV and are at risk for transmitting the virus to someone else. Secondary prevention workers will also work to help prevent exposure to other health risks that may complicate the ability to live with HIV. It is possible that social workers could be employed in programs that have both primary and secondary prevention goals or just one of these levels. Tertiary prevention is about reducing the risk of a relapse of a disease or damaging condition. It can be viewed as connecting people who are living with HIV to treatment. After connecting a person to treatment, effort is given to helping them stay in care and be adherent to the treatment or medication recommendations of their health-care providers (Driskell, 2013).
Regardless of the level of prevention targeted by a social worker, quality assessments of the individual client or client system are essential for quality client outcomes. When conducting individual-, group-, or community-level HIV risk assessments and designing prevention interventions, it is important for social workers to work from an ecological perspective and consider five types of factors: biological, psychological, demographic, sociocultural, and behavioral. Biological factors can impact the likelihood of HIV transmission. For example, if a person has another sexually transmitted disease, they can be more susceptible to HIV infection if they are exposed. Psychological aspects of a person, including how they think and feel, can impact their level of HIV risk. If a person feels that contracting HIV is inevitable and cannot be avoided, it increases their risk. Other psychological conditions that can complicate HIV prevention are feeling isolated, depressed, and anxious and having coping mechanisms that involve compulsive behaviors, including drug abuse. Demographic variables are also considered because a person’s age, race, area of residence, and sexual behaviors can put them at higher risk for HIV. For example, African Americans have disproportionately higher rates of HIV diagnoses, and these are shown to be associated with higher rates of poverty and unequal access to health care and prevention programs. Sociocultural factors also impact HIV risk. These can be numerous and may include cultural beliefs about health care, beliefs about condom use, gender-related power differences, sexual orientation, and impacts of stigma surrounding sexual behaviors and drug use. Behavioral factors are also very important when considering HIV risk reduction and prevention. Certain unprotected sexual behaviors and drug-use behaviors increase the chances of HIV infection (Driskell, 2013).
Modes of Transmission
To understand how social workers and other human service workers work toward HIV prevention, it is essential to understand what body fluids and behaviors transmit the virus. HIV lives and reproduces in the following human body fluids of someone who is HIV positive: blood, semen, preseminal fluid, breast milk, vaginal fluids, and anal mucous. Other substances, which do not carry significant amounts of HIV unless they have blood mixed with them, are feces, nasal fluid, saliva, sweat, tears, urine, and vomit. Health-care workers may have exposure to the following body fluids with high concentrations of HIV: amniotic fluid, cerebrospinal fluid, and synovial (joint) fluid (AIDS.gov, 2012a). To reduce stigma and irrational fear, social workers can help educate individuals and communities with regard to how HIV is not transmitted. These routes include shaking hands, using a toilet, using a drinking fountain, drinking from the same glass, sneezing, coughing, through mosquitos, or through pets. There is no risk of transmission through closed-mouthed kissing. There is a remote risk of transmission through deep, open-mouthed kissing if there are sores or bleeding gums and blood is exchanged. There are no documented cases of HIV being transmitted through playing sports, but there is a very low risk if there is direct body contact with a wound that is bleeding and blood is exchanged. HIV is not airborne or food borne (CDC, 2010).
Current HIV Incidence
HIV is transmitted through body fluids through very specific behaviors. Addressing unsafe instances of these behaviors is often the point of intervention for HIV prevention programs where social workers are active. Also relevant to HIV prevention workers are the specific population groups most impacted at the time. Over time, the pattern of HIV incidence by age group, racial group, and transmission category has evolved, thus causing a shift in prevention programming. In the early 21st century in the United States, HIV incidence—that is, the number of new cases in a period of time, such as a year—has remained stable. However, certain age ranges, racial groups, and behavior categories are disproportionately affected by new HIV diagnoses. Data from 2010 show that HIV incidence was highest among individuals aged 25 to 34 (31%), followed by ages 13 to 4 (26%), thus substantiating the need for prevention efforts targeted toward youth and young adults. The rate of new HIV diagnoses among males is 4.2 times that of females (CDC, 2013a).
In 2010 in the United States, African Americans (and other Blacks, such as Caribbean Blacks) continued to bear the most disproportionate burden of new HIV cases. Their incidence rate was 7.9 times as high as the rate in White Americans. The rate for Hispanic/Latinos was 3 times the rate for Whites. Men who have sex with men (MSM) continue to remain the most heavily affected population group. MSM is a term developed by the CDC to identify people at high risk for HIV by behavior, rather than by how they identify. Comparing 2008 with 2010, HIV incidence among MSM increased 12%, with a 22% increase in MSM aged 13 to 24. Although MSM represent about 7% of the male population in the United States, in 2010 MSM accounted for 78% of HIV incidence among males. Overall, when comparing 2008 with 2010, there were decreases in HIV incidence in women, including African American women. However, burden is still high among African Americans and MSM. There were sharp increases in youth, especially young African American MSM. These data show the need for focus on prevention of HIV transmission through male-to-male sexual contact (CDC, 2013a).
Estimated HIV Incidence in 2010 for the Most Affected Subpopulations
Percentage of new HIV diagnoses
Number of cases
Black heterosexual women
Black heterosexual men
White heterosexual women
Hispanic heterosexual women
Black male injection-drug users
Black female injection-drug users
From a Crisis Climate to a Chronic Condition
AIDS, the medical condition that can develop from HIV, was first seen in 1981. In the three decades since those initial cases of AIDS, prevention strategies and care models have dramatically changed. This evolution is certainly the result of significant biomedical advancements, but also of its evolution as a social phenomenon. Unlike the crisis climate around AIDS in its first decade, there is now little panic in the United States about the virus. In fact, many people who identify themselves as low risk are not focused on HIV prevention at all. In a way, the pharmacological advancements have led to a societal apathy about HIV prevention.
The advent of antiretroviral medications is often considered the most significant positive development in the story of HIV and AIDS worldwide. It is said that when the first antiretroviral medication to treat HIV, AZT (zidovudine), first came on the market in 1987, people who at the time were dying with AIDS were able to get up and walk. This phenomenon of those on their deathbeds starting to live again is called the Lazarus effect, after the Biblical story of a man being raised from the dead. Since that time, there have been biomedical advancements and other positive developments that have improved the quality of life of those living with HIV and enhanced efforts to prevent transmission of the virus. In fact, the landscape of HIV prevention and care has evolved so much since the 1990s that Dr. Peter Piot, then executive director of UNAIDS (a joint program of the United Nations on HIV/AIDS), called for the global health community’s response to shift “from crisis management to sustained strategic response” (Piot, 2006). AIDS is now considered a treatable, but incurable chronic disease.
Recent Biomedical Advances in HIV Prevention
Social workers were active on the front lines of the AIDS epidemic from its start in 1981. When others met with AIDS patients in full garb of mask, gloves, and other protective gear, hospital social workers overcame fears, held the hands of the dying patients, and made sure they were treated with human dignity (Rowan & Rice, 2013). Since those days, much has been learned about HIV prevention and care and many advances have changed the landscape of the provision of HIV-related social services. A number of the HIV prevention–related advances are biomedical, and others are related to shifts in policies and practices. All of these are relevant to social workers, meaning that to be effective, workers must stay up to date on all advancements.
The most significant biomedical advancements have been pharmacologic and have enabled many people living with HIV to keep their viral load (amount of HIV in their blood) suppressed, thus reducing the chances that they can transmit the virus. Antiretroviral therapy medications are now prescribed as a “drug cocktail,” which is a combination of three or more medications that maximally suppress replication of the HIV and stop the progression of HIV disease. With recent advances, the multiple medications can be combined in one pill. This combination regimen is called highly active antiretroviral therapy (HAART). Successful HAART will reduce the amount of virus in a patient’s blood and result in an increase in a patient’s CD4, or T-cell count, strengthening their immune response (WHO, 2013a).
For the first six years of the AIDS epidemic there were no medical treatments available, other than palliative care. The first antiretroviral medication for HIV was approved by the U.S. Food and Drug Administration (FDA) in 1987, with numerous other medications classified as antiretroviral therapies to follow. For a long time, the protocol for prescribing antiretroviral therapies was to start HAART when a patient’s CD4 count (number of T cells in the blood, which is part of the immune response) dropped below 200 cells per milliliter. Side effects were numerous and in some cases so severe that patients opted to stop the HAART medications. In recent years, new antiretroviral medications with fewer side effects were developed and approved by the FDA. Many of these medications also have combination formulations that allow for “one-pill-a-day” regimens, as opposed to the complicated, multidose, multipill regimens of the past. Over the years, guidelines about the optimal time to start HAART evolved to recommend starting taking medications sooner, such as when the patient’s CD4 count was 350 or lower or 500 or lower. In March 2012, U.S. treatment guidelines were updated to recommend initiating HAART for all people living with HIV, regardless of CD4 count or psychosocial variables (CDC, 2012a). The WHO recommends in its June 2013 guidelines (WHO, 2013b) for HAART to start immediately, regardless of CD4 count, for several groups including patients with HIV who are pregnant or lactating, have tuberculosis or liver disease, are children under the age of 5, or are in a sexual relationship with a person who is HIV negative. The recent changes in these national and worldwide policies have huge ramifications for health-care and social service workers who work toward HIV prevention. The new updates to the prescribing protocols indicate that HAART guidelines are significant to social-work practitioners who work with people living with HIV because they can provide support and education about the importance of medication adherence and compliance with other instructions given by medical providers. Further, HAART guidelines are also relevant to HIV prevention workers because HIV treatment work is now a major component of HIV prevention work.
Treatment as Prevention
Pre-Exposure Prophylaxis (PrEP).
Taking antiretroviral medication is now seen as a major component in the array of HIV prevention interventions. In July 2012, the FDA approved a combination antiretroviral medication, tenofovir, for an HIV prevention method called PrEP. In this approach, people who do not have HIV take one pill (tenofovir) a day to reduce their risk of getting HIV. PrEP is designed for men and women who participate in high-risk behaviors, such as having unprotected sex with people who have or may have HIV and injection-drug use (CDC, 2013c). However, it is important to combine this pharmacologic prevention approach with behavioral interventions that target the high-risk behaviors.
Post-Exposure Prophylaxis (PEP).
Although similar to PrEP, PEP involves taking antiretroviral medication as soon as possible after exposure to HIV to reduce the chance of becoming HIV positive. Health-care workers sometimes have accidental occupational exposures, such as needle sticks or accidental exposure through the eyes, mouth, or open skin to body fluids from patients with HIV. PEP is also advised for nonoccupational exposures, such as from sexual assault or during episodes of unprotected sex or needle sharing. To be effective at reducing risk of HIV transmission, PEP must be given within 72 hours of the exposure and continue for 28 days. HIV prevention workers should educate clients that PEP is not a substitute for other proven HIV prevention methods, such as consistent, correct use of condoms and use of sterile injection needles (AIDS.gov, 2013). Both PrEP and PEP are important tools for social workers who work with clients who participate in exchange sex or nonprescribed injection-drug use, are victims of domestic violence, dating violence, or sexual assault, and work in health-care settings. Because these interventions are so new, many clients may not be aware of their options for protecting themselves against HIV, whether it be following an accidental or unanticipated exposure or through purposeful high-risk behaviors that may be survival strategies or undertaken as a result of other psychosocial pressures. Social workers can encourage clients who use PEP and PrEP because of sexual exposures to be tested for other sexually transmitted diseases.
Results from clinical trials are the source of many biomedical advancements in HIV prevention and care. HTPN 052 is the name of a recent clinical trial run by the HIV Prevention Trials Network that examined the extent to which ART, when taken by people living with HIV, can reduce their “infectivity” and thereby reduce the chance that they will transmit HIV to uninfected heterosexual partners. Researchers studied 1,763 serodiscordant couples (that is, a couple where one partner has HIV and the other does not) and concluded that people with HIV taking antiretroviral medication substantially protected their HIV-negative partners from getting the virus, with a 96% reduction in risk. Science magazine hailed HTPN 052 as the “breakthrough of the year” in 2011. Although the study involved both men and women who are HIV positive, HTPN 052 researchers asserted that their findings provided compelling evidence that women who are HIV negative and are unable to negotiate for consistent condom use from their male partners now have an option for reducing their HIV risk (HIV Prevention Trials Network, 2011). Of the 1,763 couples, however, 97% were heterosexual, and therefore these results may not reflect realities in reduction rates among MSM. Social-work advocates can encourage researchers to use members of high-risk populations and disproportionately impacted populations in future clinical trials. Then, conclusions can be drawn about impacts on populations beyond heterosexual clients and specific to races, age ranges, and regions.
Early testing for HIV is seen as a key for curbing the HIV epidemic and is the cornerstone of secondary prevention. The majority of HIV tests do not test for the presence of HIV, but instead test for the presence of antibodies to the virus. These antibodies are proteins manufactured by the body in response to the infection, and they are much more easily detected. Following a positive HIV test, a more sensitive confirmatory test is usually performed. Next, two important tests are given to a person diagnosed with HIV: a CD4 (T-cell) count and a plasma HIV RNA assay, which quantifies the patient’s HIV viral load. These two tests will likely be given routinely for the rest of the person’s life.
There are two main types of HIV antibody tests. The first is the enzyme immunoassay test, which uses blood, urine, or saliva. This test is very accurate and less expensive, but can take up to 2 weeks for results. The second type is the rapid HIV antibody test, with different versions using blood, urine, and saliva. These can be expensive, but results can be delivered in 10 to 20 minutes. Following a positive result, a western blot HIV test is usually ordered, which can take up to 2 weeks for a confirmatory result. The availability of tests that deliver quick results enables HIV prevention workers to explain the result of the test, offer supportive counseling, and connect the client with needed services (Rowan & Holley, 2013).
Another type of HIV test is the PCR test, short for polymerase chain reaction test. The PCR does not test for HIV antibodies but instead for the genetic material of the virus itself. This test is routinely given to babies born to mothers who have HIV. It is also used to routinely test the blood supply in donation centers in developed countries. The PCR test can also be used to quantify the viral load in people with HIV.
There are two types of in-home HIV tests. The first kind, such as the Home Access HIV Test System, has been available for many years. A customer buys an over-the-counter blood or saliva sample collection kit from a drugstore and the specimen is sent to a laboratory for testing. Later, the results of the test are delivered by a phone counselor, who encourages people with positive results to seek medical care regarding their HIV diagnosis. The other type of in-home HIV test has been the subject of much controversy. As of July 2012, the FDA approved the over-the-counter sale of the OraQuick HIV rapid test (U.S. FDA, 2012). This is the same test that would be given through a medical or public-health clinic. Advocates for making the test available over the counter suggest that the benefit of the privacy this affords provides an avenue for HIV testing for people who are afraid to be seen taking a test. Further, the privacy of taking the test in one’s own home and observing a result in 20 minutes opens up options for those who are afraid of the stigma of a positive result. Opponents worry that people who receive positive results will not seek medical care, including a confirmatory test, or receive needed supportive counseling. They also caution that in-home testing does not allow for HIV prevention workers to interface with people who receive negative tests to provide accurate education regarding HIV risk reduction and testing for other sexually transmitted diseases. Nonetheless, the recent approval by the FDA has impacted the mission of social service agencies with HIV prevention programs, which used to be the only source of HIV testing outside of medical or public-health settings. Now clients can visit a drugstore to purchase an OraQuick HIV test, or even order one online, and immediately know their status in the privacy of their home.
Different countries of the world and various states across the United States have varied rules with regard to anonymous and confidential HIV testing. Confidential testing means that the results of a client’s HIV test will be attached to his or her name, shared with the medical provider and insurance company, and counted in surveillance data. However, the results are protected by privacy rules in the Health Insurance Portability and Accountability Act of 1996 (AIDS.gov, 2010). Anonymous testing allows for no method of tracing a result to a specific person. The client’s name is never collected and instead the results are linked to a person through a unique identifier. In-home testing allows for anonymous testing in states that require confidential testing.
Other Biomedical Advancements in HIV Prevention
Some recent biomedical advances in HIV prevention use approaches other than prophylactic use of antiretroviral medications and expansion of options for testing. These developments are in areas of male circumcision, development of vaginal and anal microbicides, research on an HIV vaccine, and prevention of mother-to-child transmission. The wide array of prevention approaches available allows for a combination approach (Newman, 2010).
As of August 2013, the CDC has not yet issued recommendations about male circumcision but continues to study the practice as an HIV prevention approach (CDC, 2013b). The WHO, however, reports that there exists compelling evidence that male circumcision reduces the risk of heterosexual (penis/vagina) HIV transmission by approximately 60%. The WHO and UNAIDS recommend that male circumcision by trained health professionals be used as an HIV prevention strategy in countries and regions with high HIV prevalence, low circumcision rates, and primarily heterosexual transmissions. They specify that in conjunction, male circumcision programs should include HIV testing and counseling services, instruction on correct and consistent use of male and female condoms, promotion of safer sex practices, and testing and treatment for other sexually transmitted diseases (WHO, 2013c). There are no guidelines about male circumcision as a method of risk reduction for HIV transmission through anal sex.
Microbicides are gels, foams, or suppositories that are used to kill bacteria and viruses. Researchers are studying the effectiveness of vaginal and rectal (anal) microbicides containing tenofovir or other antiretroviral formulations in reducing the transmission of HIV in serodiscordant couples. Although studies are not yet conclusive, microbicides appear to be a new, safe, cost-effective method for reduction of HIV risk. In a recent study, vaginal microbicide was found to be 39% effective in reducing a woman’s risk of HIV infection (AIDS.gov, 2012b). Microbicides appear to be an exciting strategy for HIV prevention. Some argue that they are an even more valuable tool in HIV prevention than condoms because they are easier to use than condoms, and they allow for safer sex without the need for a woman to negotiate for condom use. Microbicides make it possible for a woman to protect herself and her partner from HIV without the knowledge or consent of her male sex partners. This is an important factor in commercial sex work and for women in abusive relationships or those in which they have little power.
Indeed, these factors also apply to sexual relationships between men that involve anal sex. Despite unprotected anal sex being 10 to 20 times more likely to result in HIV transmission than unprotected vaginal sex (Vittinghoff et al., 1999), research on anal microbicides has lagged behind that of vaginal microbicides (Straube, 2011), perhaps because of heterosexist policies in research funding or in lack of acknowledgment that some heterosexual people engage in anal sex. Because of the risk of tearing of anal mucosa and exposing blood during anal sex, receptive anal sex is the sexual behavior carrying the highest risk for HIV transmission.
In 1984, after announcing that the virus responsible for causing AIDS had been identified, Margaret Heckler, who was the U.S. Secretary of Health and Human Services at the time, declared that a vaccine would be developed for the virus within 2 years. Yet 30 years later, although there are several promising lines of research toward development of an HIV vaccine for testing in humans, there remains no vaccine available.
As in the cases of measles, polio, and smallpox, viral infectious diseases are most often controlled, or even eradicated, through research, development, and deployment of an effective vaccine. Dr. Rajiv Shah of USAID stated, “if we are ever going to eradicate HIV/AIDS, it is going to be through the deployment of an AIDS vaccine” (Vick, 2013). Internationally, dialog is growing with respect to the goal of an AIDS-free generation. HIV vaccine research teams are working in multiple countries, using multiple strategies. In June 2013, U.S. Secretary of State John Kerry was quoted as saying, “Achieving an AIDS-free generation is a shared responsibility and it is going to be a shared accomplishment” (U.S. Department of State, 2013b). There is growing consensus from scientists, public-health officials, and social activists that our worldwide society is at the beginning of the end of AIDS.
Transmission of HIV from a mother to her baby during pregnancy, delivery, or breastfeeding is known as perinatal, or mother-to-child, transmission. When women are aware they have HIV while they are pregnant, they can take antiretroviral medications, which reduce the chance of transmission to the baby to 1%. Because of routine HIV testing of pregnant women in the United States, the rate of mother-to-child transmissions since the 1990s has decreased by 90%. In 2010, of the children who were diagnosed with HIV that year, 162 were thought to have been infected perinatally. This dramatic reduction in mother-to-child transmissions is heralded as a great public-health achievement (CDC, 2013e). Worldwide, however, prevention of mother-to-child transmission remains a serious need. It has been called the most effective route to achieving the goal of an AIDS-free generation. Across the world, it is estimated that 48% of HIV-positive pregnant women do not have necessary access to prophylactic antiretroviral medication (UNICEF, 2013).
Recent Associated Advances in HIV Prevention
The preceding sections have outlined many biomedical advancements of recent years and discussed their impact on HIV prevention efforts. Here, other advancements in HIV prevention policies and practices that are not biomedical in nature will be presented.
National HIV/AIDS Strategy
Nearly 30 years after the beginning of the HIV pandemic, the United States released its first National HIV/AIDS Strategy (NHAS) in July 2010. Developed by the Obama administration, the NHAS is a comprehensive, coordinated plan to fight HIV and AIDS in the United States. The vision of the NHAS is as follows:
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, sexual orientation, gender identity or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination (Office of National AIDS Policy, 2011).
The National HIV/AIDS Strategy has three primary goals:
Reducing the number of people who become infected with HIV;
Increasing access to care and optimizing health outcomes for people living with HIV; and
Reducing HIV-related health disparities. To accomplish these goals, we must achieve a more coordinated national response to the HIV epidemic.
HIV Care Continuum Initiative
Although advancements have occurred, the reality is that an estimated one fifth of individuals with HIV in the United States are unaware of their positive status. In July 2013, the Obama administration issued an executive order creating the HIV Care Continuum Initiative. This effort is intended to mobilize and coordinate the federal response to recent advances in HIV testing, services, and treatment, and improve access to all three (Office of National AIDS Policy, 2013). The initiative will work toward further integration of HIV prevention and care efforts; promote expansion of successful HIV testing and service delivery models; encourage innovative approaches to addressing barriers to access of testing and treatment; and ensure that federal resources are appropriately focused on implementing evidence-based interventions that improve outcomes along the HIV care continuum (Office of the Press Secretary, 2013).
The HIV/AIDS Treatment Cascade
The term “HIV treatment cascade” is the centerpiece of recent conversations about problems and opportunities associated with delivery of HIV prevention and care services at federal, state, and county levels. This concept acknowledges the sequence of services necessary to move individuals with HIV through testing to complete and consistent viral suppression through successful HAART. The treatment cascade model addresses the NHAS call for a “more coordinated response” to the HIV epidemic by showing how individuals and communities are responding across the entire continuum of care. This model is comprehensive by addressing responses from diagnosis of HIV to active linkage to care, initiation of antiretroviral therapy, retention in care, and eventual sustained viral suppression (meaning there is no detectable HIV in the blood). The cascade model visually shows the number of individuals living in a region and where they “fall off” the continuum from HIV testing to viral suppression. Figure 1 shows that in the United States, only 28% of those diagnosed with HIV continue across the continuum of care to viral suppression. Put another way, only one of four people living with HIV in the United States successfully accesses the care they need (Valdiserri, 2012). At the International AIDS Conference in August 2012, CDC officials estimated that the percentage is probably closer to 25% completing the continuum and added that there are important disparities across race/ethnicity, age, gender, and risk factors. Data show that African Americans and youth are least likely to be receiving ongoing care and effective treatment (CDC, 2012b). Data can also be analyzed across the cascade at state and local levels, as well as across risk groups, to assess where resources are needed and to target them accordingly. Having data presented in a visual manner, such as the HIV/AIDS treatment cascade, can cause greater impact on funding sources and community stakeholders. The visual data can help social workers garner support for leveraging resources for at-risk individuals, families, organizations, and communities.
Elimination of the Travel Ban
In October 2009, President Barack Obama lifted the 22-year-old ban on travel to the United States by people who are living with HIV in other countries. The United States was 1 of only 12 countries in the world with such a ban. The repeal of the ban was considered long overdue because it served to reinforce a stigma against people living with HIV. Shortly after the repeal, a major international AIDS conference was scheduled to be held in Washington, DC, in 2011, a venue that during the ban was not considered for hosting the leading HIV researchers and practitioners of the world (AIDS Healthcare Foundation, 2009).
Needle-Exchange Program Funding
Needle-exchange programs (also called syringe-exchange programs) have been found to be effective as a harm reduction approach. Rather than sharing dirty needles, injection-drug users can exchange them for sterile needles. In 2005, the CDC reported that needle-exchange programs contributed to an 80% reduction in HIV risk behaviors and a 30% reduction in HIV transmissions (AIDS Action, 2009), making them a cost-effective and successful strategy. Exchange programs usually offer HIV testing, counseling services, and referrals for substance-abuse treatment in conjunction with “no questions asked” needle exchanges. Critics long believed that provision of injection-drug paraphernalia would encourage and even endorse illegal drug use, resulting in a ban in 1989 on the use of federal dollars for these programs. In December 2009, President Obama signed into law an end to the longstanding ban on the use of federal money for needle-exchange programs. However, in December 2011, based on arguments against providing injection supplies to illegal drug users, Congress voted to reinstate the ban on using tax dollars to support needle-exchange programs (Office of National Drug Control Policy, 2012). Therefore, needle-exchange programs, which remain the cornerstone of HIV prevention efforts for injection-drug users, must continue to seek funding through sources other than the federal government.
Tenth Anniversary of PEPFAR
President Obama has been praised for his outspoken support for the efforts to end HIV in the United States, such as developing the first National HIV/AIDS Strategy, lifting the travel ban on HIV-positive visitors, fighting against the ban on funding for needle exchanges, and creating the new HIV Care Continuum Initiative. However, before him, President George W. Bush was active in and praised for his efforts to end HIV/AIDS worldwide. The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) is the largest commitment by any nation in history to fight a single disease. In June 2013, the PEPFAR program celebrated its 10th anniversary, announcing as its motto the ambitious but potentially attainable goal of “Working toward an HIV-free Generation.” Through PEPFAR, the U.S. government has committed over $46 billion to fight the global pandemic in underresourced countries of the world (U.S. President’s Emergency Plan for AIDS Relief, 2013). PEPFAR estimates that in the past 10 years it has funded efforts to connect 5.1 million people in underdeveloped areas with antiretroviral therapy and enabled 1 million babies to be born without HIV to positive mothers who have the virus. A new Key Populations Challenge Fund has been created to invest $20 million worldwide to specifically reach MSM, injection-drug users, and commercial sex workers with HIV prevention and care services (U.S. Department of State, 2013a).
Although the U.S. commitment to partner with other nations toward an HIV-free generation worldwide is admirable and aligns well with social-work values, it is not without its critics. One criticism was that although HIV incidence decreased through the introduction of antiretroviral therapy, rates of incidence did not drop as much as expected. Many speculated that PEPFAR initially invested in programs that were not culturally appropriate for the region of the world where they were deployed, often pushing an Americentric model. Further, faith-based organizations that received a large portion of PEPFAR funding initially used an abstinence-only approach to HIV prevention, which imposed social values on other cultures and was not practical for heterosexual couples desiring to have children. Eventually, restrictions were eased and prevention approaches that included condom distribution and education were added. Another criticism was that the massive financial investments of U.S. funds in medications and programming could have been spent on addressing domestic HIV problems (Rowan, 2013).
HIV Risk Reduction and Safer Sex Continuum
In the early 21st century, HIV prevention work with individuals is characterized by an approach that includes risk screening and a harm reduction approach. Because it is naive to believe that the old “ABC” (abstinence, be faithful, use condoms) message is appropriate or complete, new approaches aim to assess the level of sexual risk behaviors and help the client move toward safer sex behaviors on the sexual risk continuum. The safer sex HIV risk continuum is as follows, for these unprotected (no condom) behaviors (AIDS.gov, 2012c; Rowan & Holley, 2013):
Very high risk
Receptive anal sex (bottoming)
Insertive anal sex (topping)
Receptive vaginal sex
Insertive vaginal sex
Very low risk
Performing oral sex on a penis
Receiving oral sex on a penis
Performing oral sex on a vagina
Extremely low risk
Receiving oral sex on a vagina
Oral–anal contact (rimming)
Digital stimulation (fingering)
Use of sex toys if they are not shared
Casual or dry kissing
Body-to-body rubbing, with no sexual fluids
It is essential that clients be educated that this continuum does not apply to other sexually transmitted infections, such as herpes and human papillomavirus, and conditions such as pubic lice. For example, oral sex can easily spread herpes but is unlikely to spread HIV. Also, inclusion of correct and consistent use of a condom significantly reduces the risk of each sexual behavior.
For high-risk individuals, a prevention case management model may be appropriate. Prevention case management combines risk-avoidance counseling with traditional case management. Components can include assessment for health-related risks other than HIV, such as hepatitis B and C; assessment for mental-health or substance-use treatment services; safety planning for people in abusive relationships; counseling regarding previous and current trauma; crisis intervention services; and referral and linkage to and monitoring of related medical and supportive services (Brooks, 2010; Edwards & Rowan, 2013).
Evidence-Based Behavioral Risk-Reduction Interventions
Evidence-based interventions are those that have proven to be effective through scientific evaluation of outcomes. The intervention models are expected to be effective if they are replicated with “integrity”— that is, as closely to the protocol described in the original study or studies as possible. An intervention’s measure of fidelity is the degree to which its implementation adheres to the model that was originally tested. In social work, competent evidence-based practice combines well-researched models with clinical experience, social-work ethics, client preferences, and cultural factors in delivery of services. Therefore, effective implementation of behavioral HIV prevention interventions based on published studies requires social workers, clients, and researchers to work together to maintain fidelity to the extent possible, while adapting models to address specific characteristics of target population groups. Through the process of tailoring interventions to cultural, age-based, race-specific, regional, behavioral risk factor–specific, or other unique variables, interventions can be adapted to be more successful in preventing HIV transmission with targeted, high-risk groups of people (Social Work Policy Institute, 2010).
Since the beginning of the 21st century, behavioral researchers have produced a large array of successful, evidence-based interventions for targeted HIV prevention. The CDC has made a commitment through the creation of the High-Impact HIV/AIDS Prevention Program in 2011 to make materials for evidence-based intervention models easily available to local HIV prevention programs. The program replaced the Diffusion of Behavioral Interventions Program, which was started in 1989 and is well known to HIV prevention program planners and researchers. Currently, the CDC’s online Compendium of Effective HIV Prevention Interventions lists 74 risk-reduction evidence-based interventions. Through rigorous scientific evaluation, they are classified as having either best evidence or good evidence, with results demonstrating efficacy for individual-, group-, and community-level behavioral interventions. Further, they are classified by the high-risk populations with whom they were tested (CDC, 2011).
Effectiveinterventions.org is an easily accessible website that describes the components of each successful evidence-based HIV prevention intervention. Social workers interested in securing grant funding through governmental programs or foundations can use these models to construct programs based on scientific evidence that show success when they are implemented with fidelity and with the population group for which they were designed. A few of the 74 currently available are described below. Note how each is customized for a specific risk factor, age, race, or sexual minority group and intervenes at the individual, group, or community level.
Sister to Sister: Sister to Sister is an individual- and group-level HIV prevention intervention designed for implementation at inner-city women’s health clinics. African American women are instructed one on one by an African American nurse about how to effectively use condoms and negotiate for their use. Then, the women are gathered in groups of three to five to watch instructional videos, engage in role play, practice with an anatomical model, engage in group discussions, and brainstorm about HIV prevention.
¡Cuídate!: This program is named in Spanish to mean “take care of yourself.” It is a group-level intervention that is culturally tailored for Latino youth. ¡Cuídate! consists of educational modules that are delivered to groups of adolescent Latino girls and boys in locations such as community centers. The program teaches HIV/AIDS knowledge, condom negotiation, refusal of sex, and correct condom use through interactive games, role plays, discussions, videos, music, and minilectures.
D-Up!: Defend Yourself: D-Up! is a community-level intervention developed for and by young Black MSM that finds and enlists popular opinion leaders in existing social networks. The young men are trained to change risky sexual norms of their friends and acquaintances. They are prepared with strengths-based messages that counter sexual and racial biases against Black MSM in society and encourage condom use for self-preservation.
Contemporary Opportunities for Social Workers in HIV Prevention
Despite all of the recent biomedical and associated advancements in HIV prevention practices and policies, there remain nagging challenges and new obstacles.
These challenges present opportunities for social workers to effect change at micro, macro, and governmental policy levels (Rountree, Zibalese-Crawford, & Evans, 2013). Decisions regarding practice, programs, and policies should be guided by the core social-work values: service, social justice, the dignity and worth of the person, importance of human relationships, integrity, and competence (National Association of Social Workers [NASW], 2008). For example, it is a social worker’s responsibility to update his or her knowledge on the range of resources available for HIV prevention education. One population’s group should not be deemed more worthy of prevention resources than another (NASW, 2012). The following list identifies intervention points that are contemporary and in line with social-work values. It is not exhaustive, and there is great overlap among these action steps. The first challenge calls for social-work involvement in the improvement of existing intervention approaches; the second challenge identifies gaps in HIV prevention services; and the third challenge is about developing social workers’ level of competence in providing HIV-related services.
Culturally tailor existing HIV prevention interventions to address health disparities in affected populations. Effective, targeted HIV prevention programs should be culturally appropriate, taking into consideration the language, culture, ethnicity, sexual orientation, gender identity and expression, religion, age, and region of the target population (NASW, 2012). Further, they should be linguistically appropriate and client centered. In the United States, HIV continues to disproportionately impact racial minority, poor, and MSM populations, especially in the Southeast. Although there are many individual-, group-, and community-level interventions available that have already been tested and proven to be successful on different populations, there remains a need for new interventions that “meet the client where they are.” There is a need for modifying existing interventions to better serve populations at risk for HIV. An example is that, to date, there is no evidence-based model for reaching the transgender population with a culturally tailored HIV prevention approach. Social workers who understand their unique needs can work with members of this population group to design an HIV prevention approach. Involving those who are members of the target population in development of an intervention is referred to as participant-driven design, and it aligns well with the social-work view of the primacy of empowerment and the strengths perspective. Culturally tailoring interventions for communities is good practice, but employing programs that are tailored by communities is even better.
Another example of a group with unmet needs is the house/ball community. The house/ball community, or ball culture, is an underground subculture of young Black and Latino gay and bisexual men and transgender individuals in urban centers of the United States who affiliate in social structures called “houses” and gather at elaborate social events called “balls.” Balls are based on spirited competitions between houses focused on specific dance performance, to include vogue, and presentation, including drag. This subculture is known to the public-health community because of high rates of HIV incidence, other aspects of economic marginalization, and discrimination based on race/ethnicity and sexual minority status. Because this group tends to exhibit behaviors far from the mainstream, they are marginalized even within the larger group of young Black MSM (Rowan, Long, & Johnson, 2013). A recent study showed that members of this group feel stigmatized by health-care workers, as if they are treated as a public-health risk, rather than as a group of people worth protecting from HIV (Rowan, De Sousa, Randall, & Johnson, 2014). Interventions designed for the house/ball community should be culturally and linguistically appropriate. Groups such as the house/ball community require advocacy and support, and the community deserves to have interface with social workers characterized by a strengths-based perspective that acknowledges and leverages the unique strengths of this subculture.
For social workers to practice with cultural competence, they must function effectively in environments that are culturally diverse and different from their own. Cultural competence in HIV prevention work calls for professional understanding and respect of cultural differences, because clients’ cultures affect their beliefs, perceptions, attitudes, and behaviors related to sexual activities, gender-based power differentials, sexual orientation, and other issues that impact sexual risk reduction.
Exercise advocacy for overrepresented populations regarding support for policies and programs that address HIV-related inequities. The NASW, in its 2012–2014 Policy Statements (NASW, 2012), names numerous issues and areas where social workers can take an active stand in addressing unmet needs within HIV prevention efforts. The following is a partial list of prevention, social-work education, service delivery, and political action and advocacy considerations in the most recent NASW Policy Statements on HIV.
Target children and adolescents with HIV prevention messages and sexuality education in public and private school systems;
Act against underfunding of HIV prevention programming and moralistic politics that restrain ways funds can be utilized (such as against needle exchanges and for abstinence-only programs);
Eliminate inequities in and obstacles to access medications, clinical trials, and HIV care specialists;
Inclusion of quality care and HIV testing in correctional institutions;
Adequacy of affordable antiretroviral medications and associated pharmaceuticals worldwide;
Domestic and international initiatives that address structural factors to include poverty, community disinvestment, and interpersonal violence to reduce HIV;
HIV prevention and care research that addresses the unique biomedical needs of women, children, and adolescents and the psychosocial and spiritual needs of all people impacted by HIV.
Beyond those discussed above in the NASW Policy Statements, the following are other areas where social workers can advance HIV prevention by working toward action:
Expansion of interventions that address HIV prevention in conjunction with substance-abuse and mental-health disorders;
Development of specialized approaches for HIV prevention and sexual risk reduction with transgender individuals;
Infusion of HIV prevention education in more programs addressing teen dating violence, intimate partner violence, and sexual assault recovery;
Sensitivity to the unique needs for a harm reduction approach when working with people engaged in commercial sex work or other kinds of exchange sex and a nonjudgmental approach to the choices behind survival sex;
Continued innovation in enlisting the aid of African American and other faith communities in HIV prevention and sexual health promotion programs;
Creative community-wide education that breaks down stigma against HIV and combats homophobia and transphobia;
Supportive interventions for people with same-sex sexuality that address internalized homophobia that can contribute to low self-esteem and lack of interest in preserving one’s health.
Expand professional competence in best practices related to HIV prevention. The NASW reminds social workers that they must insure the sufficiency and quality of a frontline workforce (NASW, 2005) that stays informed of contemporary developments and is trained in cutting-edge skills. With the number of biomedical and other advancements described in this entry, it is clear that social workers who specialize in or interface with HIV prevention interventions need special training. There are two social work–specific organizations that work to educate social workers about contemporary HIV-related work. One is the NASW HIV/AIDS Spectrum: Mental Health Training and Education of Social Workers Project. The NASW’s Spectrum Project offers education, training, and technical assistance to health and behavioral health-care providers on the impact of HIV on mental health and wellness of individuals, families, and communities impacted by HIV. It provides practice skills on mental health, substance use, trauma, end-of-life care, ethics, health impacts of HIV, and medication adherence to enhance and promote culturally competent practice (NASW, 2013).
Another is the Professional Association of Social Workers in HIV and AIDS (PASWHA). Although social workers have been involved in HIV prevention and care for more than 30 years, it was not until about 2010 that they formally united in a professional organization. PASWHA’s goal is to support social workers who work with those impacted by HIV. Such support efforts include focused advocacy and care for those who confront stigma, poverty, discrimination, and a disproportionate burden of HIV. PASWHA is active at the National Conference on Social Work and HIV/AIDS, which has been held every year since 1988.
The Spectrum Project, PASWHA, and the National Conference on Social Work with HIV/AIDS all provide focused opportunities for social workers to advance their level of competence around HIV prevention and care. As veteran HIV/AIDS social workers leave, those coming in may not have the same familiarity with the HIV field. This reality calls for training social workers and other social service workers in best practices with HIV prevention and care (Poindexter & Linsk, 2010). Perhaps the most essential part of HIV prevention work, and one that not all social workers feel comfortable or equipped to handle, is education that involves human sexuality. Social workers should actively pursue clear, frank discussion with their clients about topics including the sexual risk continuum and harm reduction strategies, condom negotiation skills, and stigma. Further, they should know how to conduct a thorough sexual history assessment, especially for clients who are engaging in high-risk behaviors or are part of high-risk groups. Assessing for past or current sexual abuse and participation in exchange sex is also important (Rowan & Holley, 2013).
The contemporary health-related policy landscape is dominated by conjecture about the implementation of the Patient Protection and Affordable Care Act. What is clear is that the Affordable Care Act will provide access to health care to many low-income people who are at risk for HIV. Interface with the health-care system will increase rates of HIV testing in populations disproportionately impacted by HIV. The bulk of federal funding for HIV prevention in the United States, however, comes through the CDC. Social workers should stay informed about funding streams for prevention programs in their communities.
HIV/AIDS is a worldwide pandemic and social work is a global profession. These two facts and the profession’s commitment to human rights explain why social workers in the United States should be concerned about the global implications of HIV prevention. To reach the goal of an AIDS-free generation, all countries must participate. The United Nations has established eight Millennium Development Goals in its worldwide push for antipoverty. The sixth goal is focused on targeting HIV/AIDS and other diseases. Specifically, the goal calls for reversing the spread of HIV, where the rate of HIV incidence drops in most regions of the world; more people are living with HIV because of fewer AIDS-related deaths; HIV transmission remains low in young people because of education and condom use; more children orphaned by HIV are in school; and more countries have universal access to antiretroviral medications (United Nations, 2013).
Although the 30 years since the advent of the HIV pandemic have brought a number of significant biomedical advances, there remains a serious need for social workers who are trained in the knowledge and skills necessary for HIV prevention and care. Primary HIV prevention activities focus on providing culturally tailored education to communities that are most at risk for HIV, especially racial minorities, gay and bisexual men, and those with poor access to health care. Secondary prevention calls for HIV testing programs that are culturally tailored for specific at-risk populations. Further, those that are constructed with input from members of the disadvantaged community are most effective. And, perhaps most importantly, social workers must be equipped and willing to discuss sexual behaviors with clients to educate them on sexual risk reduction strategies. In the second decade of the 21st century we are said to be “at the beginning of the end of AIDS.” As biomedical advances bring us closer to an HIV vaccine and even better antiretroviral medications, social workers must advocate for equitable distribution of these resources to marginalized groups. The prospect of an AIDS-free generation should be available to all.
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