Library

How does stigma affect HIV prevention and treatment?

Prepared by Pamela DeCarlo and Maria Ekstrand, PhD Community Engagement (CE) Core | October 2016

What is HIV/AIDS stigma?

HIV-related stigma is a significant problem globally.  HIV stigma inflicts hardship and suffering on people living with HIV and interferes with research, prevention, treatment, care and support efforts. HIV-related stigma refers to negative beliefs, feelings and attitudes towards people living with HIV, their families and people who work with them. HIV stigma often reinforces existing social inequalities based on gender, race, ethnicity, class, sexuality and culture. Stigma against many vulnerable populations who are disproportionately affected by HIV (such as the stigma of homosexuality, drug use, poverty, migration, transgender status, mental illness, sex work and racial, ethnic and tribal minority status) predates the epidemic and intersects with HIV stigma, which compounds the stigma and discrimination experienced by people living with HIV (PLWH) who belong to such groups.¹ HIV-related discrimination, also known as enacted HIV stigma, refers to the unfair and unjust treatment of someone based on their real or perceived HIV status. Discrimination also affects family members and friends, caregivers, healthcare and lab staff who care for PLWH. The drivers of HIV-related discrimination usually include misconceptions regarding casual transmission of HIV and pre-existing prejudices against certain populations, behaviors, sex, drug use, illness and death. Discrimination can be institutionalized through laws, policies and practices that unjustly affect PLWH and marginalized groups.¹

How is HIV stigma harmful?

Stigma and discrimination add barriers which weaken the ability of people and communities to protect themselves from HIV and to stay healthy if they are living with HIV. To persons living with HIV. Fear of stigma, discrimination and potential violence, may keep people from disclosing their status to family, friends and sexual partners. This can increase isolation and undermine their ability to access and adhere to treatment, and undermine prevention efforts such as using condoms and not sharing drug equipment. Enacted stigma can result in losing housing and jobs, being ostracized by family, and being treated badly in healthcare facilities, among other effects. To vulnerable populations. The way people experience stigma varies across countries and communities. Stigma discourages people from seeking information and programs, for fear it will make others think they have HIV, are promiscuous or unfaithful, or are members of populations associated with HIV, like people who inject drugs, sex workers and gay men. It can make people less likely to get tested for HIV, use condoms, ask their partners about their status, use clean needles and injection equipment, or access biomedical prevention options such as male circumcision and pre-exposure prophylaxis (PrEP).

How do people cope with stigma?

Several factors help individuals cope with HIV-related stigma, and respond to feelings of worthlessness, depression, and anger associated with their diagnosis. Many people learn to manage or cope with stigma quite well and have very positive relationships not impacted greatly by stigma, especially if they have supportive family and friends. Social support. For many PLWH, social support can help buffer the impact of any stigma. A study of African American PLWH found many had experienced stigma and discrimination, but the impact was softened by having non-PLWH in their social networks express interest and take the initiative to offer help. Connection with other PLWH gave them an opportunity to share their feelings and to fight for their rights.² A study of young African American men who have sex with men (MSM) found that stigma of racism and homophobia was associated with delayed HIV testing, but that men with peer support tested earlier.³ Adapting and coping. Although it can be difficult for persons in already stigmatized communities to identify as HIV-positive, many PLWH do accept their HIV status and successfully form an identity of being pro-active and choosing to live. Adequate treatment for depression and anxiety, along with acceptance of one’s diagnosis, provide a protective buffer against stigma and promote acceptance of lifelong HIV treatment.⁴

How is HIV stigma addressed?

Stigma exists, and should be targeted at multiple levels: individual, interpersonal (family, friends, social networks), organizational, community and public policy.5 Involving PLWH in the design, creation, implementation and evaluation of stigma reduction programs is critical to success. Individual level Increasing individual knowledge about HIV transmission, prevention and care, as well as access to services and legal rights is important. One study in South Africa found that while some PLWH experienced stigma through insults and arguments with family members during conflict, they knew that disclosing someone’s status without their consent was a crime. In these instances, threatening to go to the police, or sometimes actually calling the police, allowed PLWH to fight back and maintain their self-esteem.⁶ Interpersonal level The We Are Family campaign from Greater Than AIDS and the Georgia Department of Public Health, reinforces the importance of social support for PLWH. The video campaign features a grandmother and her grown son, a college student and his parents, a pastor and his congregation, a recovering addict and his mother, a transgender woman and her sister, and childhood best friends, all supporting one another following an HIV diagnosis.⁷ Organizational level Healthcare providers are often named by PLWH as important sources of stigma.⁸ Programs for training healthcare workers⁹ should address culturally-specific stigma drivers, including personal fears of infection, prejudice towards vulnerable groups, and misconceptions or lack of knowledge about HIV transmission, prevention, treatment and universal precautions.¹⁰ Programs also should address how the effect of stigma, discrimination, breaches of confidentiality and negative attitudes can negatively impact patients’ lives, health, and ability to follow treatment regimens. Biomedical and behavioral approaches to HIV prevention, such as PrEP, routine HIV testing, starting treatment soon after diagnosis (test and treat), and treatment for PLWH to viral suppression, have been successful in the US and several countries in reducing new HIV infections and improving the life and health of PLWH. However, HIV stigma and discrimination can greatly impact the success of these interventions. Stigma surrounding PrEP use, including assumptions about promiscuity, can negatively affect PrEP access and uptake.¹¹ Prejudice among healthcare workers may result in drug users, young adults, women¹² and other marginalized populations not being offered either PrEP or HIV testing. Community level The Let’s Stop HIV Together campaign, launched by the Centers for Disease Control and Prevention (CDC), raises awareness about HIV and its impact on the lives of all Americans, and fights stigma by showing that persons with HIV are real people—mothers, fathers, friends, brothers, sisters, sons, daughters, partners, wives, husbands, and co-workers. The campaign offers facts about HIV, links to testing sites across the US, guidance for taking action against stigma, and online stories about PLWH, and the people who care for them.¹³ Policy level In Ghana, the Commission on Human Rights and Administrative Justice, the Ghana AIDS Commission and the Health Policy Project developed a web-based mechanism for PLWH to report discrimination in employment, health care, education and other areas. Reports can be anonymous, and all reports result in mediation, investigation and legal resolution by human rights and legal organizations.¹⁴

What needs to be done?

Both the US White House and UNAIDS reports recommend focusing on key populations that have high and disproportionate rates of HIV, and are at higher risk for transmitting and acquiring HIV.^1,15 Reducing stigma for other conditions common among persons at risk for or living with HIV—such as substance use, mental health problems, sex work and homelessness—and addressing homophobia are important efforts to improve health outcomes. However, promotion of disclosure of HIV status must be accompanied by protections for PLWH. This calls for a continued commitment to civil rights enforcement.

Says who?

1. UNAIDS. Reduction of HIV-related stigma and discrimination. Guidance Note. 2014. www.unaids.org/en/resources/documents/2014/ReductionofHIV-relatedstigma… 2. Mosack KE, Stevens PE, Brouwer AM, et al. Shared illness and social support within two HIV-affected African American communities. Qualitative Health Research. 2015 Oct 28. 3. Scott HM, Pollack L, Rebchook GM, et al. Peer social support is associated with recent HIV testing among young black men who have sex with men. AIDS and Behavior. 2014;1:913-920. 4. Katz IT, Ryu AE, Onuegbu AG, et al. Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis. Journal of the International AIDS Society. 2013, 16(Suppl 2):18640. 5. Stangl AL, Lloyd JK, Brady LM, et al. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013: how far have we come? Journal of the International AIDS Society. 2013;16(Suppl 2):18734.) 6. Abrahams N, Jewkes R. Managing and resisting stigma: a qualitative study among people living with HIV in South Africa. Journal of the International AIDS Society. 2012;15:17330. 7. We Are Family. www.greaterthan.org/we-are-family-love-saves-lives/ 8. UNAIDS. Key programmes to reduce stigma and discrimination and increase access to justice in national HIV responses. Guidance Note. 2012. https://www.unaids.org/en/resources/documents/2012/Key_Human_Rights_Programmes  9. Kidd R and Clay S. Understanding and challenging HIV stigma: Toolkit for action. International Center for Research on Women. 2003. www.icrw.org/publications/understanding-and-challenging-hiv-stigma-tool… 10. Ekstrand ML, Ramakrishna J, Bharat S, et al. Prevalence and drivers of HIV stigma among health providers in urban India: implications for interventions. Journal of International AIDS Society. 2013;16:18717. 11. Calabrese SK, Underhill K. How Stigma Surrounding the Use of HIV Preexposure prophylaxis undermines prevention and pleasure: A call to destigmatize “Truvada whores.” American Journal of Public Health. 2015;105:1960–1964. 12. Auerbach JD, Kinsky S, Brown G, et al. Knowledge, attitudes, and likelihood of pre-exposure prophylaxis (PrEP) use among US women at risk of acquiring HIV. AIDS Patient Care and STDs. 2015. 29:102-110. 13. CDC. Let’s Stop HIV Together. www.cdc.gov/actagainstaids/campaigns/lsht/ 14. UNAIDS. On the Fast-Track to end AIDS by 2030: Focus on location and population. 2015. www.unaids.org/en/resources/documents/2015/FocusLocationPopulation 15. The White House. The National HIV/AIDS Strategy: Updated to 2020. https://www.hiv.gov/federal-response/national-hiv-aids-strategy/nhas-update

Prepared by Pamela DeCarlo and Maria Ekstrand PhD, CAPS *CAPS October 2016 . Special thanks to the following reviewers of this Fact Sheet: Sarah Calabrese, Barbara Green-Ajufo, Cynthia Grossman, William Holzemer, Sebastian Kevany, Daryl Mangosing, Cynthia Tucker. Reproduction of this text is encouraged; however, copies may not be sold, and the University of California San Francisco should be cited as the source. Fact Sheets are also available in Spanish. ©2016, University of CA. Comments and questions about this Fact Sheet may be e-mailed to [email protected].

Can HIV Prevention Programs Be Adapted?

Why adapt?

We know that many HIV prevention interventions have made a difference, and that prevention efforts have helped to lower rates of HIV infection in many different populations.¹ But as the HIV epidemic changes, so too do the number and groups of people at risk for HIV. Adapting interventions allows us to use principles we know are effective to address the needs of those newly at risk, who may not have been studied yet. Developing new interventions is expensive and time consuming, and it makes good sense to adapt programs that have been demonstrated to be effective.² Using existing tools and theories of successful programs can save time and money. In an age when money for prevention is limited, adapting interventions can be cost-effective.

Aren’t all populations different?

Yes and no. While each community or population is unique, there are many similarities between populations and their social, political and emotional environments. While injecting drug users in Chicago, IL may have very different needs than young gay men in Eugene, OR, both may benefit from similar aspects of programs. For example, using peer educators to help spread the message and change community norms can be effective for both groups.^3,4 HIV prevention is more than simply teaching safer sex and safe drug use nuts and bolts. Prevention programs need to take into account the life context in which a person applies safer sex, and the relationship to the HIV epidemic of the person. Prevention programs need to be tailored to these different situations, not reinvented entirely.

What helps with adaptation?

Program planners can choose from a variety of elements of prevention programs that can address their own local population, setting or intervention needs. Staff training and technical assistance to understand and effectively implement programs is key for successful adaptation. Understanding the community is integral to adapting programs.⁵ Service organizations often know their populations best, whether through outreach or needs assessment. Before adapting an intervention, it is essential to understand the characteristics of the original program and its audience, and how they are different or similar to the new environment. Theory gives a background for behavior change, and may also be useful in assessing whether an intervention is appropriate for a different target group. For example, the Social Cognitive theory of behavior calls for learning through interactions with other people and using physical and social environments to produce change.⁶ Role playing, community building, interactive videos and job training can all be components of a program using this theory. Peer education has been an important element of prevention programs and serves as a powerful motivator especially for disenfranchised people. Such programs recruit peer educators who are at high risk, and teach them how to educate and help save the lives of their friends and colleagues.⁷ This recognizes that people in their own communities have tremendous power of persuasion and can be effective agents of change. Another successful prevention element involves addressing notions of family, community and ethnic pride.⁸ For example, offering parenting and communicating classes often attracts more participation from parents than offering classes specifically about HIV. Appealing to protecting and supporting the community or family-children, spouses, relatives-can be more encouraging than simply protecting oneself.

What are some examples?

The STOP AIDS project in San Francisco, CA, has served as a model for HIV prevention across the country.⁹ The model, based on community mobilization and outreach and small group meetings, has been adapted and used for gay men across the country.⁹ The STOP AIDS model has been used in Los Angeles, CA, West Palm Beach, FL, Phoenix, AZ and Chicago, IL, among other cities. In San Francisco, clients have been recruited on the streets and at bars, while in Chicago, the program has gone into schools. They have found that HIV prevention programs work better when high levels of local commitment are established in a city. Healthy Oakland Teens (HOT), a peer-based sex education program at a junior high school in Oakland, CA, trained ninth graders to lead classes on sexuality and HIV/AIDS to seventh graders. After one year, students in the program were less likely to initiate activities such as deep kissing, genital touching, and sexual intercourse.¹⁰ HOT was then adapted to address Balinese youth who were perceived at risk for HIV due to increasing HIV seroprevalence and an extensive tourist and sex industry in Bali. In Bali, researchers found that among members of traditional Balinese youth groups, only 14% of those who were sexually active had used condoms. Although most still lived at home, only 33% reported feeling comfortable discussing sexuality with their parents, while 75% felt comfortable discussing it with their peers. The HOT model of peer education was therefore seen to be appropriate, and the setting was changed from public schools to traditional Balinese youth groups which reach all Balinese youth regardless of socioeconomic status or educational level.¹¹ One successful prevention program for gay men in small cities recruited popular opinion leaders from bars, and trained them to deliver and model prevention messages to their peers.¹² This program was then adapted to address minority women in inner city housing developments. However, the program didn’t work there. The reason? Women didn’t know their neighbors, and because of high crime rates in the housing developments, were reluctant to open their doors to someone they didn’t know. This program was then reworked, starting by helping women in the housing developments establish a sense of community through potluck dinners and music festivals. As a result, not only did the women increase condom use and communication, but the community began to tackle other issues besides HIV such as drugs and violence in the housing development.¹³

What needs to be done?

Service organizations need to commit time and resources to training staff in effective use of prevention programs, including using theory, conducting needs assessments and reaching out to researchers and other organizations to find out what interventions have been shown to be effective. Community planning groups (CPGs) need to facilitate better communication and stable relationships between researchers, community based organizations and Health Departments. CPG Program Coordinators can help link CPGs with local researchers to help community-based prevention planners determine the best adaptations to make. Researchers need to move from small scale efficacy studies to wide scale field trials. Many interventions are effective in what can be a very controlled research environment (clients often receive payment, staff is well paid and often have advanced degrees). These interventions then need to be tested in the “real world” to see how they may need to be adapted or modified to ensure effectiveness under different conditions and with different populations. Funders need to commit funds to adaptation and pilot testing new programs at the community level. A comprehensive HIV prevention strategy uses many elements to protect as many people at risk for HIV as possible. Adapting existing interventions can be a money-saving and effective prevention strategy.

Says who?

1. Office of Technology Assessment. The Effectiveness of AIDS Prevention Efforts. 1995.
2. Holtgrave DR, Qualls NL, Curran JW, et al. An overview of the effectiveness and efficiency of HIV prevention programs . Public Health Reports. 1995;110:134-146.
3. Weibel W, Jimenez A, Johnson W, et al. Positive effect on HIV seroconversion of street outreach intervention with IDUs in Chicago. Presented at the 9th International Conference on AIDS. Berlin, Germany, 1993. Abstract WSC152.
4. Hays RB, Rebchook, GM, Kegeles SM. The Mpowerment project: a community-level HIV prevention intervention for young gay and bisexual men . American Journal of Public Health. 1996;86:1-8.
   • Contact: Susan Kegeles 415/597-9159.
5. Herek GM, Greene B, eds. AIDS, identity, and community : the HIV epidemic and lesbians and gay men . Thousand Oaks, CA: Sage Publications; 1995.
6. Bandura A. Social cognitive theory and exercise of control over HIV infection. In DiClemente RJ, ed. Preventing AIDS: Theories and Methods of Behavioral interventions . New York, NY: Plenum Press; 1994.
7. Grinstead OA, Zack B, Faigeles B. Effectiveness of peer HIV education for prisoners. Presented at the Biopsychosocial Conference on AIDS; Brighton, England. 1994.
   • Contact: Barry Zack, Marin AIDS Project 415/457-2487.
8. Díaz RM. HIV risk in Latino gay/bisexual men: a review of behavioral research. Report prepared for the National Latino/a Lesbian and Gay Organization. 1995.
   • Contact: Jose Ramón Fernández-Peña, Mission Neighborhood Health Center, 415/552-1013 X386.
9. Wohlfeiler D. Community Organizing and Community Building Among Gay and Bisexual Men. In Minkler M, ed. Community Organizing and Community Building for Health . Rutgers University Press. (in press).
   • Contact: Dan Wohlfeiler 415/575-1545.
10. Ekstrand ML, Siegel D, Nido V, et al. Peer-led AIDS prevention delays initiation of sexual behaviors among US junior high school students. Presented at 11th International Conference on AIDS, Vancouver, BC. 1996.
    • Contact: Maria Ekstrand 415/597-9160.
11. Merati T, Wardhana M, Ekstrand M, et al. HIV risk taking among youth participating in peer-led AIDS education programs in traditional Balinese youth groups. Presented at the 11th International Conference on AIDS; Vancouver BC. 1996. Th.C.4411.
12. Kelly JA, St. Lawrence JS, Stevenson LY, et al. Community AIDS/HIV risk reduction: the effects of endorsements by popular people in three cities . American Journal of Public Health. 1992;82.1483-1489.
    • Contact: Jeff Kelly 414/287-4680.
13. Sikkema KJ, Kelly J, Heckman T, et al. Effects of community-level behavior change intervention for women in low-income housing developments. Presented at the 11th International Conference on AIDS; Vancouver BC. 1996. Tu.C.453.

Contact: Kathy Sikkema 414/287-6100.

Prepared by Pamela DeCarlo and Jeff Kelly

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National AIDS Clearinghouse at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. ©1996, University of California

Se pueden adaptar los programas de prevención del VIH?

¿para qué adaptarlos? Sabemos que muchas intervenciones de prevención del VIH han logrado hacer la diferencia y que los esfuerzos de prevención han ayudado a reducir las tasas de infección con VIH en diferentes poblaciones.¹ Así como la epidemia del VIH cambia, igual ocurre con las cantidades y los grupos poblacionales afectados por el este virus. Adaptar intervenciones nos permite usar los principios que han comprobado ser eficaces y luego ser aplicadarlos a aquellos grupos que recién entran a formar parte del riesgo y que por lo tanto no han sido analizados. Crear intervenciones consume tiempo y dinero, por esta razón adaptar programas que han demostrado su eficacia es lo más sensato.² Usando las herramientas y teorías de otros programas exitosos puede ahorrarnos tiempo y dinero. En una época en la que los fondos de prevención escasean, adaptar intervenciones puede ser lo más apropiado para el bolsillo. ¿acaso son iguales los diferentes grupos poblacionales? Sí y no. A pesar de que cada comunidad o población es única, existen muchas semejanzas entre ellas, incluyendo el entorno social, político y emocional. Si bien es cierto que los usuarios de drogas intravenosas de Chicago, IL y los jóvenes gay de Eugene, OR tienen diferentes necesidades, ambos pueden beneficiarse de ciertos aspectos que ofrecen los programas de intervención. Por ejemplo, ambas poblaciones pueden usar personas del mismo grupo para transmitir mensajes y cambiar normas de grupo.^3,4 La prevención del VIH va más allá de la enseñanza del sexo seguro y del uso responsable de las drogas. Los programas de prevención necesitan tomar en cuenta el contexto de la vida de la persona que practica el sexo seguro y la relación de esta persona con respecto a la epidemia. Los programas de prevención pueden ser adaptados de acuerdo a las circunstancias que se presentan, no necesariamente reinventarlo totalmente. ¿cómo se logra esta adaptación? Para adaptar un programa, es esencial conocer bien a la comunidad a intervenir.⁵ Las organizaciones que ofrecen servicios a nivel comunal son quienes mejor conocen a su población, a través del reclutamiento o del estudio de sus necesidades. Antes de adaptar un programa de intervención es necesario entender muy bien las características del programa original, a su audiencia habrá también que identificar las diferencias y semejanzas con relación al ambiente al que será adaptado. La teoría nos brinda las bases para ejercer el cambio conductual, esta a su vez puede ser muy útil para darse cuenta si la intervención es apropiada para el grupo que será intervenido. Por ejemplo, la teoría Social Cognitiva nos conduce al aprendizaje por medio de la interacción con otras personas, utilizando el entorno social y físico para producir el cambio.⁶ Las dramatizaciones, la creación de la conciencia a nivel comunitario, los juegos interactivos, la enseñanza de un oficio, todos estos elementos pueden formar parte de un programa basado en esta teoría. La educación impartida por personas del mismo grupo al que se va a tratar puede ser un elemento exitoso y sirve de gran motivación, especialmente entre las personas en desventaja. Estos programas reclutan a aquellas personas que están a riesgo y se les entrena para que puedan educar y salvar las vidas de aquellos que corren el mismo riesgo.⁷ Esto pone en evidencia que hay miembros dentro de la comunidad que pueden actuar como agentes que tienen la capacidad de lograr el cambio. Otro elemento exitoso consiste en utilizar principios de familia, el orgullo por la raza y despertar el sentido de comunidad.⁸ Por ejemplo, se obtiene mayor participación de los padres de familia al ofrecer clases de comunicación entre padres e hijos que si se ofrecieran clases específicas sobre el VIH. Hacer un llamado a la comunidad para que proteja a la familia, a los hijos, esposos y esposas y a que se apoyen entre sí, puede ser más estimulante que hacer un llamado para protegerse a sí mismo. ¿algunos ejemplos? El proyecto “STOP AIDS” de San Francisco, CA ha servido de modelo en la prevención del VIH en toda la nación.⁹ El modelo, basado en la movilización de la comunidad, el reclutamiento y las pequeñas reuniones de grupo, ha sido adaptado y usado por hombres gay a lo largo del país. El modelo de “STOP AIDS” se ha usado en los Angeles, CA, West Palm Beach, FL, Phoenix, AZ y en Chicago, IL, entre otras. En San Francisco, los clientes han sido reclutados en la calle y en los bares, mientras que en Chicago el programa se ha hecho en las escuelas. Se ha descubierto que los programas de prevención funcionan mejor si ya existe un sentido de responsabilidad comunitario en la ciudad que se piensa intervenir. El “Healthy Oakland Teens” (HOT), un programa de educación sexual impartido por los estudiantes de una escuela en la ciudad de Oakland, CA, entrenó a jóvenes del noveno grado para impartir clases de sexualidad y de VIH/SIDA a los estudiantes del séptimo grado. Un año más tarde, los participantes del programa estuvieron menos propensos a iniciar actividades tales como los besos apasionados, tocarse los genitales o iniciar relaciones sexuales.¹⁰ HOT fue adaptado para jóvenes Balineses ya que ha habido un incremento en la seroprevalencia debido al incremento del turismo y a la industria del sexo en Balí, Indonesia. En Balí, los investigadores descubrieron que entre los grupos de jóvenes tradicionales, sólo el 14% de los activos sexualmente habían usado condones. A pesar de que la mayoría aún vivía con sus padres, solo el 33% reportó sentir confianza al hablar sobre la sexualidad con sus padres, mientras que el 75% sentía más confianza hablando de sexo con sus amigos. El modelo inicialmente usado por HOT pareció ser el más apropiado para lograr la adaptación, solo que esta vez las bases no iban a ser en las escuelas, sino que se adiestró a grupos tradicionales, que llevaran el mensaje a todo jóven Balinés sin importar el nivel educacional o socio-económico.¹¹ Otro de los programas que resultó exitoso, reclutó a líderes del gusto popular que asistía a los bares, a estos se les adiestró para diseminar mensajes de prevención a este grupo.¹² Este programa se adaptó a un grupo de mujeres de minoría racial residentes en viviendas gubernamentales. Sin embargo, el programa no funcionó en este ambiente. ¿El motivo? Las mujeres no se conocían entre sí, y por a las altas tasas de crimen registradas en este tipo de viviendas, no existía la confianza de para abrir las puertas a desconocidos. Este programa volvió a intentarse, esta vez comenzando ayudando a las mujeres a crear conciencia comunitaria, organizando festivales, música y cenas a la que cada una traía un platillo. El resultado fue el incremento del uso del condón y una mayor comunicación. Entre otras cosas se logró tratar temas que afectaban a la comunidad en estos complejos de vivienda tales como las drogas y la violencia.¹² ¿qué se puede hacer? Las organizaciones que ofrecen servicios deben invertir tiempo y dinero en la capacitación del personal sobre cómo aprovechar los programas de prevención al máximo, esto incluye: el uso de la teoría, el estudio de las necesidades de la población a la que se piensa intervenir tanto como cultivar la relación entre ivestigadores y organizaciones para estar enterados sobre el tipo de programas que han demostrado su eficacia. Los grupos de planificación comunitaria (CPGs) pudieran crear y mantener una relación estable entre los investigadores, las organizaciones a nivel comunitario y el Departamento de Salud. Los coordinadores de programas de los CPGs, además, deberían poner en contacto a los CPGs con los investigadores locales, ambos a su vez pueden ayudar a los planificadores de prevención a nivel comunitario a determinar cuáles son las adaptaciones más apropiadas. Los investigadores necesitan pasar de los estudios con eficacia en menor escala a los de mayor escala. Muchas intervenciones son eficaces en un área de mucho control (los clientes son remunerados, el personal bien pagado y con un nivel alto de educación). Estas intervenciones deben ser puestas a prueba en el “mundo real”, solo así se sabrá cuáles son las modificaciones que habrán de hacerse para poder asegurar la efectividad bajo circunstancias diferentes. Los administradores de estos fondos deberán comprometerse a designar dinero para la adaptación de programas y para llevar a cabo programas piloto a nivel comunitario. Un programa de prevención completo, utiliza muchos elementos para proteger del VIH a la mayor cantidad de gente posible. Adaptar los programas de intervención existentes puede ahorrar dinero además de ser una estrategia eficaz en la prevención.

¿quién lo dice?

1. Office of Technology Assessment. The Effectiveness of AIDS Prevention Efforts. 1995.
2. Holtgrave DR, Qualls NL, Curran JW, et al. An overview of the effectiveness and efficiency of HIV prevention programs . Public Health Reports. 1995;110:134-146.
3. Weibel W, Jimenez A, Johnson W, et al. Positive effect on HIV seroconversion of street outreach intervention with IDUs in Chicago. Presented at the 9th International Conference on AIDS. Berlin, Germany, 1993. Abstract WSC152.
4. Hays RB, Rebchook, GM, Kegeles SM. The Mpowerment project: a community-level HIV prevention intervention for young gay and bisexual men . American Journal of Public Health. 1996;86:1-8.

• Contact: Susan Kegeles 415/597-9159.

1. Herek GM, Greene B, eds. AIDS, identity, and community : the HIV epidemic and lesbians and gay men . Thousand Oaks, CA: Sage Publications; 1995.
2. Bandura A. Social cognitive theory and exercise of control over HIV infection. In DiClemente RJ, ed. Preventing AIDS: Theories and Methods of Behavioral interventions . New York, NY: Plenum Press; 1994.
3. Grinstead OA, Zack B, Faigeles B. Effectiveness of peer HIV education for prisoners. Presented at the Biopsychosocial Conference on AIDS; Brighton, England. 1994.

• Contact: Barry Zack, Marin AIDS Project 415/457-2487.

1. Díaz RM. HIV risk in Latino gay/bisexual men: a review of behavioral research. Report prepared for the National Latino/a Lesbian and Gay Organization. 1995.

• Contact: Jose Ramón Fernández-Peña, Mission Neighborhood Health Center, 415/552-1013 X386.

1. Wohlfeiler D. Community Organizing and Community Building Among Gay and Bisexual Men. In Minkler M, ed. Community Organizing and Community Building for Health . Rutgers University Press. (in press).

• Contact: Dan Wohlfeiler 415/575-1545.

10.  Ekstrand ML, Siegel D, Nido V, et al. Peer-led AIDS prevention delays initiation of sexual behaviors among US junior high school students. Presented at 11th International Conference on AIDS, Vancouver, BC. 1996.

• Contact: Maria Ekstrand 415/597-9160.

11.  Merati T, Wardhana M, Ekstrand M, et al. HIV risk taking among youth participating in peer-led AIDS education programs in traditional Balinese youth groups. Presented at the 11th International Conference on AIDS; Vancouver BC. 1996. Th.C.4411. 12.  Kelly JA, St. Lawrence JS, Stevenson LY, et al. Community AIDS/HIV risk reduction: the effects of endorsements by popular people in three cities . American Journal of Public Health. 1992;82.1483-1489.

• Contact: Jeff Kelly 414/287-4680.

13.  Sikkema KJ, Kelly J, Heckman T, et al. Effects of community-level behavior change intervention for women in low-income housing developments. Presented at the 11th International Conference on AIDS; Vancouver BC. 1996. Tu.C.453. Contact: Kathy Sikkema 414/287-6100.

Preparado por Pamela DeCarlo y Jeff Kelly, Traducción Romy Benard-Rodríquez Mayo 1997. Hoja Informativa 23S.

CAPS/PRC Technical Assistance

How can we assist your organization?

CAPS/PRC is funded to provide technical assistance (TA) to community based organizations and local and state health departments to assist in the access, use and implementation of HIV science to strengthen programmatic and research processes, develop stronger grant proposals and develop evidence based policies. Contact us now. 

Consultations are also offered by the CAPS Developmental, Methods, Community Engagement, and Intervention and Implementation Cores. Visit each core to learn more about the specific services and resources that are currently available. 

Scientific Assistance

• Consult with a Researcher
• Review of Program Materials
• Targeted Review for Grant Proposals and Surveys
• Assistance in facilitating research/community partnerships
• Science to Inform Policy

Access and use of HIV Science

• Assessments and measurement tools
• Fact Sheets, Reports, Research Summaries and Instruments
• Science Access (Journal Articles searches, etc)
• Recommend Resources in Spanish
• Interpreting and applying HIV science to community programs

Community Collaboration

• Community Advisory Board TA
• Partnership Development
• Community Engagement
• Evaluation Resources

Dissemination and Engagement

• Dissemination and Diffusion Strategies
• Social Media for Public Health
• Utilizing Web Metric and Analytics

Past Technical Assistance Provided:

• Strategize web marketing for an Open-Access GIS system self-teaching curriculum
• Connect Community-Based Organizations with Survey Instruments
• Assist in the development and implementation of a Community Advisory Board (CAB)

Contact the Community Engagement (CE) Core with questions or requests at:

Web contact form / Phone: 415-476-6326 / Email: [email protected]

Can cost-effectiveness analysis help in HIV prevention?

Why invest in HIV prevention?

HIV prevention is still our best hope for fighting the HIV/AIDS epidemic. The estimated lifetime cost of care and treatment for just one HIV+ person is about $195,000.¹ Given 40,000 new infections a year, it will cost more than $6 billion in future years to care for everyone who gets infected this year alone.² By keeping people from becoming infected, HIV prevention not only saves lives and slows down the epidemic, it also reduces the number of persons who require expensive medical regimens to combat their HIV disease. The cost of the AIDS epidemic is incurred not only in dollars, but also in the suffering and death of friends, family and loved ones. The loss to society is untold. We lose productivity and creativity, as well as health and social service dollars. AIDS has a high cost to society because it predominantly affects young adults in their prime for work and childbearing. In 1998, HIV was the fifth leading cause of death in the US for persons aged 25-44, the leading cause of death for African American men aged 25-44 and the third leading cause of death for African American women in the same age group.³

What is cost-effectiveness analysis?

The term cost-effectiveness analysis refers to the economic analysis of an intervention. In HIV prevention, one measure of cost-effectiveness is the cost per HIV infection averted. This is affected by many factors: intervention cost, number of people reached, their risk behaviors and HIV incidence, and the effectiveness of the intervention in changing behavior. The purpose of cost-effectiveness analysis is to quantify how these factors combine to determine the overall value of a program. Cost-effectiveness analysis can determine if an intervention is cost-saving(cost per HIV infection averted is less than the lifetime cost of providing HIV/AIDS treatment and care) or cost-effective (cost per HIV infection averted compares favorably to other health care services such as smoking cessation or diabetes detection). Community-based organizations (CBOs), community planning groups (CPGs) and health departments often face the difficult task of choosing from a spectrum of HIV prevention strategies in order to best address the HIV prevention needs of the riskiest populations in their community. Knowing the cost-effectiveness of programs can help them decide how to save the most lives with the limited resources available.⁴ Cost-effectiveness analyses also break down the costs and resources needed to implement interventions—personnel, training, supplies, transportation, rent, overhead, volunteer services, etc. This can help CBOs decide if they can implement an intervention.

What are the limitations?

Cost-effectiveness is an important consideration but is only one of many factors that should be considered when making program decisions. Cost-effectiveness models do not take everything into account—sometimes they omit important but hard to quantify factors like family stability, freedom from HIV-related stigma and social justice. In addition to helping clients reduce their HIV risk, many interventions also help clients get into stable housing, out of abusive relationships or into drug treatment programs. These outcomes are not easily quantifiable in cost-effectiveness models. HIV prevention cost-effectiveness estimates cannot be generalized easily because the effectiveness of programs is determined by rates of infection and risk behaviors that may vary greatly across populations. Unlike a surgical procedure, which is likely to be as effective in Cleveland as it is in Dallas, HIV prevention programs can be more or less effective depending on the status of the epidemic in a community at risk.⁵ More and more, HIV prevention programs are being asked to “prove their worth” by showing they are cost-saving or cost-effective. Just because a program doesn’t save society money, doesn’t mean it’s not good or needed. A program that does not save money might still be cost-effective; or, it might not be cost-saving or cost-effective yet still be something that society wants and needs.

What programs are cost-effective?

A variety of intervention strategies for injection drug users were shown to be cost-effective: needle exchange (typically $4,000-40,000 per HIV infection averted, or HIA), HIV testing and counseling ($5,000-10,000 per HIA) and drug treatment ($40,000 per HIA which may not include important benefits like crime reduction).⁶ Project LIGHT, a randomized, controlled multisite HIV prevention trial, tested a seven-session small group intervention based on cognitive-behavioral therapy. Project LIGHT found the multi-session intervention to be more effective at reducing sexual risk than a comparison 1-hour videotape session. However, the seven-session intervention was also more expensive to implement. Cost-effectiveness analysis showed that the multi-session intervention was not only more effective than the videotape session in reducing risk, but also was more cost-effective.⁷ Safer Choices, a school-based HIV, STD and pregnancy prevention program, achieved a 15% increase in condom use and an 11% increase in contraceptive use among sexually active students. By preventing cases of HIV, chlamydia, gonorrhea, pelvic inflammatory disease and pregnancies, Safer Choices saved $2.65 in medical and social costs for every dollar spent on the program.⁸ The Mpowerment Project is a community-level HIV prevention intervention run by and for young gay and bisexual men. Mpowerment took place in a mid-sized city with low HIV prevalence and used community building and peer influence to alter the norms of the gay community. The program proved to be cost-effective even with resource- intensive components such as personnel, renting a community space and running social events. Mpowerment was estimated to avert 5-6 HIV infections over 5 years, with cost per HIA of $14,600-18,300.⁹ In the developing world, where the need for aggressive HIV prevention efforts is profound, interventions have been found to be very cost-effective. This is because the epidemic is very severe, and because program costs (such as personnel) are low in these countries. Estimates of cost-effectiveness include: STD control and condom promotion in commercial sex workers ($8-10 per HIA), female condom promotion in high-risk women (cost-saving), voluntary counseling and testing (about $70 per HIA in HIV-discordant couples, $300 overall), community STD control ($350 per HIA), and mother-to-child transmission reduction with nevirapine ($300-500 per HIA).¹⁰

What does cost-effective analysis show?

• All other things being equal, interventions targeted to high-seroprevalence areas tend to be more cost-effective than interventions that are not targeted.
• Low cost doesn’t mean cost-effective. If a client needs an intensive intervention, spending the money may be the most cost-effective choice in the long run.
• Reaching more clients for the same money isn’t always the best thing to do. Giving everyone a brochure produces little behavior change, whereas working intensively to help high-risk clients use condoms correctly, communicate safer sex desires to their partners and learn to recognize and avoid high-risk situations can result in pronounced behavior change.¹¹³

What still needs to be done?

Cost-effectiveness analyses can help determine how to save the most lives with limited funding. Neglecting cost-effectiveness information may waste scarce prevention dollars, and thereby miss the opportunity to save lives.¹² To this end, simpler cost-effectiveness models and improved technical assistance are needed to help public health decision-makers make better use of cost-effectiveness information.¹³

Says who?

1. Holtgrave DR, Pinkerton SD. Updates of cost of illness and quality of life estimates for use in economic evaluations of HIV prevention programs. Journal of Acquired Immune Deficiency Syndromes. 1997;16:54-62. 2. Holtgrave DR, Pinkerton SD. The economics of HIV primary prevention. In JL Peterson & RJ DiClemente (eds). Handbook of HIV Prevention. New York: Plenum Press, 2000; 285-296. 3. Centers for Disease Control and Prevention. Mortality slide series.https://www.cdc.gov/hiv/library/slidesets/index.html. 4. Kahn JG. The cost-effectiveness of HIV prevention targeting: how much more bang for the buck? American Journal of Public Health. 1996;86:1709-1712. 5. Pinkerton SD, Johnson-Masotti AP, Holtgrave DR, et al. Using cost-effective league tables to compare interventions to prevent sexual transmission of HIV. AIDS. 2001;15:917-928. 6. Kahn JG. Economic evaluation of primary HIV prevention in intravenous drug users. In Holtgrave DR, ed. Handbook of Economic Evaluation of HIV Prevention Programs. New York:Plenum Press, 1998. 7. Pinkerton SD, Holtgrave DR, Johnson-Masotti AP, et al. Cost-effectiveness of the NIMH Multisite HIV Prevention intervention. AIDS and Behavior. 2002;6:83-96. 8. Wang LY, Davis M, Robin L, et al. Economic evaluation of Safer Choices. Archives of Pediatric and Adolescent Medicine. 2000;154:1017-1024. 9. Kahn JG, Kegeles SM, Hays R, et al. Cost-effectiveness of the Mpowerment Project, a community-level intervention for young gay men. Journal of Acquired Immune Deficiency Syndromes. 2001;27:482-491. 10. Marseille EA, Hofmann PB, Kahn JG. HIV prevention should be funded before HAART in Sub-Saharan Africa. Lancet. In press 11. Centers for Disease Control and Prevention. Compendium of HIV Prevention Interventions with Evidence of Effectiveness. November 1999. 12. Institute of Medicine. No time to lose – getting more from HIV prevention. Washington, DC: National Academy Press; 2000. 13. Pinkerton SD, Holtgrave DR. A method for evaluating the economic efficiency of HIV behavioral risk reduction interventions. AIDS & Behavior. 1998;2:189-201.

Further reading:

DR Holtgrave (ed). Handbook of Economic Evaluation of HIV Prevention Programs. New York: Plenum Publishers, 1998. Gold MR, Siegel JE, Russell LB, Weinstein MC (eds). Cost- effectiveness in Health and Medicine. New York: Oxford University Press, 1996.

Prepared by James G. Kahn*, Steven D. Pinkerton**, David R. Holtgrave*** *Institute for Health Policy Studies, UCSF; **Center for AIDS Intervention Research, Medical College of Wisconsin; ***Rollins School of Public Health, Emory University January 2002. Fact Sheet #12ER Special thanks to the reviewers of this Fact Sheet: Kim Compoc, Karin Coyle, Paul Farnham, Susan Fernyak, Celia Friedrich, Anne Haddix, Ana Johnson-Masotti, Susan Klein, Frank Laufer, Rani Marx, David Perlman, Katherine Phillips, Ron Stall, Mike Sweat, Gary Zarkin.

Reproduction of this text is encouraged; however, copies may not be sold, and the Center for AIDS Prevention Studies at the University of California San Franciso should be cited as the source of this information. For additional copies of this and other HIV Prevention Fact Sheets, please call the National Prevention Information Network at 800/458-5231. Comments and questions about this Fact Sheet may be e-mailed to [email protected]. © February 2002, University of California