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¿Quienes son los hombres trans?

Transgenero (‘trans’) es un término sombrilla para aquellas personas las cuales la identidad de género y expresión no conforman las normas y expectaciones tradicionales asociadas al género asignado al nacer. Hombres transgenero, también conocidos como hombres trans, son personas a las que se les asigno ‘femenino’ a la hora de nacer y tienen una identidad de género y/o una expresión de genero masculina. Personas transgenero pueden auto identificarse y expresar su género en una variedad de formas y en muchas ocasiones prefieren ciertos términos y no otros. Algunos que transicionan de mujer a hombre no se identifican para nada como transgenero sino solamente como hombres, a un hombre trans se les debe de referir con pronombres masculinos. De cualquier manera, si uno no está seguro, lo mejor es de que con respeto se les debe preguntar en qué términos y que proverbios estar personas prefieren ser referidas. Información precisa sobre la diversidad de los cuerpos de los hombres trans no está al alcance ampliamente. Los hombres trans tienen diferentes tipos de cuerpos, dependiendo en el uso que hacen de testosteronas y cirugías usadas para la confirmación de su género (las cuales puede incluir la reconstrucción del pecho, histerectomía, metodioplastia, falloplastia,¹ etc.; visitar la página de internet en ingles: www.ftmguide.org para más información. Los hombres trans utilizan una amplia gama de términos y lenguajes para identificar su sexo y/o genero, describir sus partes corporales, y divulgar su estatus trans a otros. Por ejemplo, algunos hombres trans no se sienten cómodos con términos como “vagina” o “sexo vaginal” y suelen preferir llamarle “hoyo frontal” y “sexo frontal” o “sexo del hoyo frontal”, aunque esto no sea verdadero para todos los hombres trans. Esta diversidad crea necesidades únicas y barreras al negociar y adherirse a prácticas sexuales más seguras las cuales no son mencionadas en actuales programas de prevención del VIH.

¿Qué es lo que sabemos sobre el VIH y los hombres trans?

La comunidad transgenero es diversa y no se han llevado a cabo suficientes estudios con gente trans en general. En particular, tenemos información muy limitada sobre los hombres trans. Hasta la fecha, estudios relacionados con el VIH entra las personas trans han sido enfocadas casi exclusivamente en mujeres trans (personas las cuales se les asigno “masculino” al nacer y tiene una identidad de género femenina y/o una expresión de género femenina). De cualquier manera, existe evidencia que hay un subgrupo significante de hombres trans que llevan a cabo en sexo sin protección con otros hombres no-trans (trans MSM), incluyendo algunos hombres trans que están envueltos en el trabajo sexual. Varias ciudades han llevado a cabo estudios de necesidades que se enfocan en, o son inclusivas a los hombres trans y los riesgos de contrael el VIH, como Philadelphia, Washington D.C, San Francisco, y la provincia de Ontario. Los escasos estudios publicados que muestran casos entre los hombres trans reportadan un prevalencia del 0 – 3%.^2-4 Estas cifras son auto-reportadas, de cualquier forma, y están basadas en muestras pequeñas y no representativas, así que no tenemos información final sobre cifras actuales. Dado a que se asume número bajos de infección del VIH entre hombres trans este es relavito a otros grupos de alto riesgo, no han habido muchos estudios sobres actividades de riesgo entre los hombres trans. Nosotros si sabemos que los mensajes de prevención del VIH no están llegando a la mayoría de los hombres trans.⁵ También sabemos que trans MSM buscan servicios en organizaciones donde proveen servicios a hombres gay, donde hay poca o no hay educación para los hombres trans y sus parejas non-trans.⁴ Proveedores generalmente no están entrenados para identificar o dar servicios a los hombres trans gay o bisexuales en formas culturalmente sensitivas, ni entienden sus riesgos o necesidades de prevención especificas.

¿Qué es lo que no sabemos sobre el VIH y los hombres trans?

Nosotros no tenemos suficiente información sobre el VIH y los hombres trans. Métodos de colección de información en lugares donde se llevan a cabo estudios no identifican exactamente, no mantienen un control de los hombres trans ni capturan sus experiencias, lo cual contribuye a la falta de clarificación de las cifras de infección del HIV entre los hombres trans. Cifras del VIH y actividades sexuales de riesgo entre los hombres trans tampoco son muy entendidas puesto que continuamente se asume que las relaciones sexuales de los hombres trans son primariamente con mujeres non-trans. De cualquier manera, como cualquier otro hombre, los hombres trans pueden ser de cualquier orientación sexual y pueden tener sexo con diferentes tipos de parejas, incluyendo (pero no limitándose a) hombres non-trans, mujeres transgenero, y hombres transgenero.^6,7

¿Qué pone a riesgo a los hombres trans?

En un estudio, la mayoría de trans MSM reportaron consistentemente no usar condones durante el sexo anal receptivo y/o sexo frontal (vaginal) con otras parejas masculinas non-trans, y bajos el número de exámenes del VIH y baja percepción de riesgo.⁴ En áreas urbanas en donde la prevalencia de números del VIH entre non-trans MSM son estimadas de ser 17-40% y los números de Infecciones Transmitidas Sexualmente (ITS) están incrementando, trans MSM quienes practican sexo anal receptivo sin protección y/o copula (penetración) con non-tran MSM pueden ser especialmente vulnerable al VIH/ITS.^8,9 Los hombres trans pueden enfrontar complicados juegos de poderes y dinámicas de género en sus relaciones sexuales con otros hombres non-trans. Para un trans MSM, el tener sexo con una pareja hombre gay es una validación muy fuerte para identidad gay/queer, especialmente en los años iniciales de su transición, y puede esto ser más importante que el de insistir a usar un condón. Algunos hombres trans que usan testosteronas han reportado un incremento es su deseo sexual y un incremento en el interés sexual con hombres no trans después de comenzar el uso de hormonas, el cual puede contribuir al deseo de tomar riesgos seuxales.^4,10 Los hombres trans pueden enfrontar complicados juegos de poderes y dinámicas de género en sus relaciones sexuales con otros hombres non-trans.⁴ Para un trans MSM, el tener sexo con una pareja hombre gay es una validación muy fuerte para identidad gay/queer, especialmente en los años iniciales de su transición, y puede esto ser más importante que el de insistir a usar un condón. Algunos hombres trans que usan testosteronas han reportado un incremento es su deseo sexual y un incremento en el interés sexual con hombres no trans después de comenzar el uso de hormonas, el cual puede contribuir al deseo de tomar riesgos seuxales. ^4,10 Los hombres trans en testosterona y/o quienes hayan tenido una histerectomía pueden tener sequedad frontal (vaginal), lo cual incrementa sus riesgos de trauma frontal (vaginal) durante la penetración, y así incrementando sus riesgos de infección de las ITS, incluyendo el VIH¹⁰ Baja autoestima puede contribuir a practicar sexo de riesgo entre los hombres trans. Los números de depresión, uso de substancias, y atentos de suicidios son altos en esta población, pero existen múltiples barreras al tratar de obtener apoyo y tratamiento que sea culturalmente competente. ^3,11 El uso de drogas y alcohol es un gran factor de riesgo en cualquier comunidad, sin importar su identidad de género. Los hombres trans puede usar alcohol o drogas para realzar sus experiencias sexuales o para ayudar a aliviar o reducir ansiedades sobres sus cuerpos durante el sexo.⁴ Algunos hombres trans pueden sentir presión de usar drogas para poder pertenecer a algunas comunidades o subculturas de hombres gay. Aunque tenemos muy poca información sobre el compartir agujas para hormonas o uso de drogas entres los hombres trans, este también puede ser un factor de riesgo para algunos de ellos.

¿Qué puede ayudar?

Noviasgo en el Internet. Varios hombres trans conocen a sus parejas sexuales no-trans en el internet. Conocer parejas por medio de anuncios personales puede permitir los hombres trans describir sus cuerpos y genero inicialmente (si ellos deciden hacerlo) y así discutir sexo más seguro con posible parejas antes de encontrarse en persona.⁴Materiales educacionales para parejas no-trans. Parejas hombres no-trans de los hombres trans frecuentemente no tienen experiencia con los hombres trans ni acceso a educación sexual con ellos, lo cual los lleva a tener una idea equivocada sobre sexo más seguro. Para hombres gay no-trans, sexo más seguro frecuentemente solo significa usar condón para el sexo anal y pueden no estar consientes del riesgo asociado con el sexo frontal (vaginal). Vea la próxima sección que contiene informacion en materiales disponibles. Gran visibilidad en la comunidad gay. Hombres gay y bisexuales necesitan ser educados sobre la presencia de los hombres trans en sus comunidades. Visibilidad incrementada y conocimiento sobre los hombres trans puede ayudar a crear un medioambiente de bienvenida, ayuda a incrementar inclusividad, y ayuda los hombres trans a sentirse con más poder es sus relaciones con otros hombres no-trans.⁷

¿Qué es lo que se está haciendo?

tm4m (tm4m.org) es un projecto basado en San Francisco para los hombres trans que juega con otros hombres (o que quiere jugar con ellos). Este provee información, educación, y apoyo a los hombres trans que tienen sexo con otros hombres por medio de talleres educacionales mensuales y grupos de discusión, materiales informativos y continuamente trabajan en adoptar aceptación y crear comunidad. tm4m es un esfuerzo colaborativo co-patrocinado por Eros, Trannywood Pictures y TRANS:THRIVE (un programa del Centro de Salud para Asiaticos y personas de las islas del pacifico). El Grupo de Trabajo de Hombres Trans Gay/Bi/Queer ha conducido un estudio de necesidades con trans MSM, creado recursos de salud sexual,¹² y la página electrónica www.queertransmen.org También proveen entrenamiento y consulta sobre la inclusión de trabajadores de prevención a través de la provincia. All Gender Health Online (www.allgenderhealth.org) es un estudio que explora la salud sexual de hombres no-transgenero que tienen sexo con personas transgenero. Los resultados serán usados para crear una intervención en el internet para prevenir la extensión del VIH y promover la salud sexual de personas transgeneros y sus parejas. El proyecto STOP AIDS de San Francisco, California se esfuerza en incluir los hombres trans en su programación y educación comunitaria. Estos incluyen transgenero hombres en la declaración de la misión de su agencia y han cambiado los métodos de colectar información que mejor reflejen cuerpos en transición e identidades de géneros en comunidades de hombres gay.

¿Qué queda por hacer?

Necesitamos implementar métodos de colección de información mas inclusiva para mejor captar subgrupos de personas transgenero. Proveedores de salud no deben asumir que todos los hombres que ellos ven han sido asignados ‘hombre’ al nacer. ¹³ Uno no puede decir que alguien es trans al solo mirarlo. El mejor método para colección de información es una pregunta de dos partes: 1) pregunta sobre identidad de género actual y 2) pregunta que sexo fue asignado al nacer. Si uno no está seguro, debería de preguntar los hombres trans por su nombre y pronombres preferidos y usar estos términos. Si los números del VIH entre los hombres trans están de hecho bajos, tenemos nosotros la oportunidad de envolvernos en un trabajo verdadero de prevención para mantener esos números bajos. Adquirir un mayor entendimiento de los comportamientos de riesgo de los hombres trans y las diferente formas en las cuales ellos mismos se protegen, ayudara a proveer educacion apropiada y efectiva de prevención del VIH para los hombres trans y sus parejas sexuales.

¿Quién lo dice?

1. Es importante notar que pocos hombres trans tienen penes completamente funcionales, debido primariamente a las bajas tasas del éxito de la cirujía, altos números de complicaciones y el alto costo de la cirujía. 2. Herbst J, Jacobs E, Finlayson T, et al. Estimating HIV prevalence and risk behaviors of transgender persons in the United States: A systematic review. AIDS and Behavior. 2007. 3. Clements-Nolle K, Marx R, Guzman R, et al. HIV prevalence, risk behaviors, health care use, and mental health status of transgender persons: Implications for public health intervention. American Journal of Public Health. 2001;91:915-921. 4. Sevelius J. ‘‘There’s no pamphlet for the kind of sex I have’’: HIV-related risk factors and protective behaviors among transgender men who have sex with non-transgender men. Journal of the Association of Nurses in AIDS Care. 2009;20:398-410. 5. Hein D, Kirk M. Education and soul-searching: The Enterprise HIV prevention group. In: Bockting W, & Kirk, S., editor. Transgender and HIV: Risks, prevention, and care.Binghamton, NY: The Haworth Press; 2001. p. 101-117. 6. Schleifer D. Make me feel mighty real: Gay female-to-male transgenderists negotiating sex, gender, and sexuality. Sexualities 2006;9(1):57-75. 7. Bockting W, Benner A, Coleman E. Sexual identity development among gay and bisexual female-to-male transsexuals: Emergence of a transgender sexuality. Archives of Sexual Behavior. 2009;38(5). 8. Colfax G, Coates T, Husnik M, Huang Y, Buchbinder S, Koblin B, et al. Longitudinal patterns of methamphetamine, popper (amyl nitrite), and cocaine use and high-risk sexual behavior among a cohort of San Francisco men who have sex with men. Journal of Urban Health. 2005;82:i62-i70. 9. CA Department of Health Services. California HIV counseling and testing annual report: January - December 2003. Sacramento, CA: Office of AIDS; 2006. 10. Gorton N, Buth J, Spade D. Medical therapy and health maintenance for transgender men: A guide for health care providers: Lyon-Martin Women’s Health Services; 2005. 11. Newfield E, Hart S, Dibble S, Kohler L. Female-to-male transgender quality of life. Quality of Life Research 2006;15(9):1447-57. 12. Gay/Bi/Queer Transmen’s Working Group of the Ontario Gay Men’s HIV Prevention Strategy. Primed: The Back Pocket Guide for Transmen & The Men Who Dig Them. Toronto, Ontario; 2007. 13. Center of Excellence for Transgender HIV Prevention. Recommendations for inclusive data collection of trans people in HIV prevention, care, and services. University of California, San Francisco. 2009. www.transhealth.ucsf.edu

Una publicación del Centro de Estudios para la Prevención del SIDA (CAPS) y el Instituto de Investigaciones sobre SIDA (ARI), Universidad de California en San Francisco (UCSF). Se autoriza la reproducción (citando a UCSF) más no la venta de copias este documento. También disponibles en inglés - https://prevention.ucsf.edu/resources/factsheets-english-and-spanish. Para recibir las Hojas de Datos por correo electrónico escriba a [email protected] con el mensaje “subscribe CAPSFS nombre apellido” ©UCSF 2010    

What Are HIV Prevention Needs of Adults Over 50?

Are older adults at risk?

Yes. Over 10% of all new AIDS cases in the US occur in people over the age of 50.¹ In the last few years, new AIDS cases rose faster in middle age and older people than in people under 40.² While many of these AIDS cases are the result of HIV infection at a younger age, many are due to becoming infected after age 50. It is difficult to determine rates of HIV infection among older adults, as very few persons over the age of 50 at risk for HIV routinely get tested.³ Most older adults are first diagnosed with HIV at a late stage of infection-when they seek treatment for an HIV-related illness. Cases among older people may be under reported, as HIV symptoms and infections may coincide with other diseases associated with aging, and thus be overlooked. AIDS-related dementia is often misdiagnosed as Alzheimer’s, and early HIV symptoms such as fatigue and weight loss may be dismissed as a normal part of aging.⁴ Older persons with AIDS get sick and die sooner than younger persons. This is due to late diagnosis of the disease as well as co-infection with other diseases that may speed the progression of AIDS. Also, new drugs for HIV treatment may interact with medications the older person is taking to treat pre-existing chronic conditions.

What puts them at risk?

A common stereotype in the US is that older people don’t have sex or use drugs. Very few HIV prevention efforts are aimed at people over 50, and most educational ad campaigns never show older adults, making them an invisible at-risk population.⁶ As a result, older people are generally less knowledgeable about HIV/AIDS than younger people and less aware of how to protect themselves against infection. This is especially true for older injecting drug users, who comprise over 16% of AIDS cases over 50. Men who have sex with men form the largest group of AIDS cases among adults over 50. Older gay men tend to be invisible and ignored both in the gay community and in prevention. Among the HIV risk factors for older gay men are internalized homophobia, denial of risk, alcohol and other substance use, and anonymous sexual encounters.⁷ Women comprise a greater percentage of all AIDS cases as age increases. While 6.1% of all AIDS cases among those aged 50-59 are women, the percentage of cases occurring among women rises to 13.2% for age 60-69 and 28.7% for those 65 and older.⁸ Normal aging changes such as a decrease in vaginal lubrication and thinning vaginal walls can put older women at higher risk for HIV infection during intercourse.⁹

what are barriers to prevention?

Few Americans over age 50 who are at risk for HIV infection either use condoms or get tested for HIV. In a national survey, at-risk people over 50 were one sixth as likely to use condoms and one fifth as likely to have been tested for HIV than at-risk people in their 20s.³ Factors that influence condom use in older persons are not known. Doctors and nurses often do not consider HIV to be a risk for their older patients. A study of doctors in Texas found that most doctors rarely or never asked patients older than 50 years questions about HIV/AIDS or discussed risk factor reduction. Doctors were much more likely to rarely or never ask patients over 50 about HIV risk factors (40%) than they were to never or rarely ask patients under 30 (6.8%).¹⁰ Many older people live in assisted living communities, where there is still great stigma attached to HIV/AIDS, often associated with homosexuality and/or substance abuse. Management may be resistant to providing HIV/AIDS educational materials or presentations in their facilities.

How are older adults different?

Cultural and generational issues need to be considered in crafting HIV prevention efforts. Older persons may not be comfortable disclosing their sexual behaviors or drug use to others. This can make it difficult to find older adults who attend support groups.¹¹ Also, older adults may not view condom use as important or necessary, especially post-menopausal women who need not worry about pregnancy protection. Older adults may have fewer surviving friends and a smaller social network to provide support and care. Also, they are more likely to be caregivers themselves, as about one third of AIDS patients are dependent on an older parent for financial, physical or emotional support.¹²

What’s being done?

Unfortunately, few prevention programs exist that target adults over 50. Most programs for older adults offer support for HIV+ persons, or target clinicians and caregivers of older adults. Promising prevention programs incorporate generational concerns, target high-risk groups such as older gay men and older women (especially recent widows), and involve older adults in their design and as peer educators. Senior HIV Intervention Project (SHIP) in Florida’s Dade, Broward and Palm Beach Counties, trains older peer educators to present educational and safer sex seminars at retirement communities. Trained AIDS educators meet with health care professionals and aging services workers to help them understand the risk posed to seniors by HIV.¹³ In six regional senior centers in Chicago, IL, a program used peer-led “study circles” to increase HIV awareness and knowledge. Participants viewed a video, “The Forgotten Tenth,” and did their own research as to how HIV affects their lives physically, politically and economically. They then shared their knowledge at the next meetings. After the program many participants became AIDS educators.¹⁴ An HIV education program for older adults was conducted at meal sites in Florida. Based on the Health Belief Model, the program included facts and statistics on older persons and HIV, condom use instruction, HIV testing information, and case studies of older persons with AIDS. After the session, participants reported a significant increase in knowledge about AIDS and perceived susceptibility to HIV.¹⁵

What needs to be done?

There has been a striking lack of interest in people over 50 in HIV prevention efforts. Prevention programs are needed specifically for older adults. Mainstream ad campaigns need to incorporate images and issues concerning persons over 50 and encourage at-risk older adults to be routinely tested for HIV. More research on sexual and drug using behavior of older adults is needed, as well as research on disease progression and treatments, including recruiting HIV+ older persons for clinical trials. Clinicians and service providers for older adults, including care takers and nursing home staff, need to be educated on HIV risk behaviors and symptoms of HIV infection among older adults. Clinicians need to conduct thorough sex and drug use risk assessments with their patients over 50, and challenge any assumptions that older people do not engage in these activities or will not discuss them. Older adults need support and education to ensure that their lives over 50 are as rewarding and safe as before 50. A comprehensive HIV prevention strategy uses many elements to protect as many people at risk for HIV as possible. Adults over 50 are an especially important group to target with prevention messages, both for their own risk behaviors, and for their role as leaders and teachers of younger generations.

Says who?

1. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Report . 1996;8:15. 2. HIV, AIDS, and older adults . Fact sheet prepared by the National Institute on Aging, National Institutes of Health. 3. Stall R, Catania J. AIDS risk behaviors among late middle-aged and elderly Americans. The National AIDS Behavioral Surveys . Archives of Internal Medicine. 1994;154:57-63. 4. Whipple B, Scura KW. The overlooked epidemic: HIV in older adults . American Journal of Nursing. 1996;96:22-28. 5. Skiest DJ, Rubinstien E, Carley N, et al. The importance of comorbidity in HIV-infected patients over 55: a retrospective case-control study . American Journal of Medicine. 1996;101:605-611. 6. Feldman MD. Sex, AIDS, and the elderly . Archives of Internal Medicine. 1994;154:19-20. 7. Grossman AH. At risk, infected, and invisible: older gay men and HIV/AIDS . Journal of the Association of Nurses in AIDS Care. 1995;6:13-19. 8. Ship JA, Wolff A, Selik RM. Epidemiology of acquired immune deficiency syndrome in persons aged 50 years or older . Journal of Acquired Immune Deficiency Syndromes. 1991;4:84-88. 9. Catania JA, Turner H, Kegeles SM, et al. Older Americans and AIDS: transmission risks and primary prevention research needs . Gerontologist. 1989;29:373-381. 10. Skiest DJ, Keiser P. Human immunodeficiency virus infection in patients older than 50 years. A survey of primary care physicians’ beliefs, practices, and knowledge . Archives of Family Medicine. 1997;6:289-294. 11. Nokes K, ed. HIV/AIDS and the older adult . Washington DC: Taylor & Francis;1996. 12. Ory MG, Zablotsky D. Notes for the future: research, prevention, care, public policy. In MW Riley, MG Ory, D Zablotsky, eds. AIDS In an Aging Society. New York, NY: Springer Publishing; 1989. 13. Senior HIV Intervention Project (SHIP). Contact: Lisa Agate (954) 467-4774. 14. Dill D, Huston W. AIDS education for older adults. Healthpro UIC. 1996;Fall:18-19. Contact: Rita Strombeck, HealthCare Education Associates (760) 323-4032. 15. Rose MA. Effect of an AIDS education program for older adults . Journal of Community Health Nursing. 1996;13:141-148. Contact: Molly Rose (215) 503-7567. Resources: NY HIV Over 50 Task Force Brookdale Center on Aging Hunter College 425 E 25th Street New York, NY 10010 (212) 481-7594.

• Contact: Kathy Nokes [email protected]

American Association of Retired Persons (AARP) Social Outreach and Support (SOS) 601 E Street, NW Washington, DC 20049 (202) 434-2260 http://www.aarp.org National Association on HIV Over Fifty (NAHOF) Midwest AIDS Training & Education Center University of Illinois 808 S. Wood Street m/c 779 Chicago, IL 60612 (312) 996-1426 [email protected] National Institute on Aging https://www.nia.nih.gov/

Prepared by Pamela DeCarlo* and Nathan Linsk, PhD** *CAPS, **National Association on HIV Over 50, Midwest AIDS Training & Education Center September 1997. Fact Sheet #29E

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]. © September 1997, University of California

What are American Indian/ Alaskan Natives’ (AI/AN) HIV prevention needs?

Are AI/AN at risk for HIV?

Yes. American Indians and Alaskan Natives (AI/AN) represent a unique population within the US, not only because of their oppression suffered in the development of this country but also because of their ongoing struggle to gain recognition in the HIV/AIDS epidemic. AI/ANs are not so unique, however, that they are protected from the same behaviors that put all people at risk for HIV infection. The long history of oppression of AI/AN in the US has had a devastating effect on the health and well-being of Native Peoples. This history, including colonization, outlawing Native languages and spiritual practices, and centuries of forced relocation, has created justified mistrust of US government programs and health institutions.¹ This legacy continues to shape the experience of AI/AN as they are disproportionately impacted by poverty, ill health, family violence and drug and alcohol abuse. All of these factors are associated with HIV risk.² Through the end of 2000, AI/ANs comprised 2,337 AIDS cases and 871 HIV cases³. AI/AN constitute approximately 1% of the total US population, and just under 1% of reported AIDS and HIV cases³. Although these numbers appear small relative to other populations, the impact is considerable. Underreporting and the lack of detailed HIV surveillance of AI/AN may result in significant undercounting of HIV infections. Further, AI/AN are often misclassified in terms of race/ethnicity on data collection forms, due to assumptions about names, skin color, residence and even intentionally misleading self reporting.⁴ A study of STD data in Oklahoma found that 35% of chlamydia and over 60% of gonorrhea cases among AI/AN had been incorrectly attributed as Hispanic or white.⁵

What puts AI/ANs at risk?

HIV research among AI/AN has a short history starting in the early 1990s, with few studies on risk behavior. According to the CDC, for AI/AN men, the leading exposure category for HIV is men who have sex with men (MSM) at 51%, MSM and injection drug use (IDU) 13% and heterosexual IDU 12%. Among women, the primary exposure risk is heterosexual contacts at 41%, followed by IDU at 32%. However, this data does not include data from California, which has the largest Native population of all 50 states.⁶ AI/AN populations are disproportionately impacted by social, behavioral and economic factors that are associated with HIV risk. AI/AN suffer high rates of poverty and unemployment, with 32% living below poverty level, compared to 13% of the general US population. Native Americans also experience high rates of drug and alcohol use, STDs and violence. Alcohol use in the AI/AN population has resulted in the highest alcohol-related mortality rates for all US populations.⁹ One study of AN drug users found that alcohol use was the factor that put them at greatest risk for HIV. Many individuals reported blacking out while drinking, and later learned that they had unprotected sex with complete strangers or persons they would not otherwise accept as partners.¹⁰ This same study showed that drug using Alaskan Native women are at high risk for gonorrhea infection and HIV infection. AN women were more likely to inject drugs than any other ethnic group among women, and they were more likely to have white male injectors as sex partners. Sex pairs composed of AN women and white men were the least likely of any ethnic pair combinations to use condoms.¹¹ In states with AI/AN populations over 20,000, gonnorhea and syphilis rates are twice as high as among other ethnic groups.⁷ Persons with STDs are more likely both to transmit HIV and become infected with HIV if exposed. A study of American Indian youth in over 200 reservation-based schools across the US showed that youth engaged in several risk behaviors: the use of alcohol, tobacco and other drugs, risky sexual behavior and suicidal behaviors. Drug use was most commonly associated with other risky behaviors.¹²

What are barriers to prevention?

HIV is often rendered invisible within AI/AN communities that are facing many other severe and more visible health and social problems such as alcoholism, diabetes and unemployment. As a result, there is often great denial about HIV as a problem in AI/AN communities. Like in many other tight-knit communities, confidentiality can be difficult to maintain in AI/AN communities, especially in rural areas. This can be a barrier to important prevention activities such as testing for HIV, discussing sexual practices with health care providers, obtaining drug treatment, or buying condoms in local stores. Prevention services for AI/AN MSM are severely underfunded, and those that exist may not reach MSM at risk. AI/AN MSM have a wide range of identities, from “gay” to “two-spirit” and may not access services addressed to urban gay men.¹³ AI/AN MSM may feel isolated and not seek out needed services because of stigma and denial about homosexuality in some AI/AN communities. The AI/AN population is highly diverse, with over 550 federally-recognized tribes. AI/AN consider themselves to belong to Indian nations that are sovereign, with complex relationships between tribal, state and federal governments. Many state and local governments erroneously assume that the IHS is solely responsible for the health- related needs of AI/AN. Less than 1% of IHS budget goes to urban populations, yet more than half of all AI/AN in the US live in urban areas. As a result, AI/AN tribes and organizations are often denied funding opportunities available to other citizens.

What’s being done?

To address the rising rates of STDs and HIV among adolescents in a rural Arizona Indian tribe, tribal health educators, school officials and public health officials collaborated to establish several programs including school health clinics, Native American HIV+ speakers, peer-produced educational dramas, community educational meetings and radio and newspaper ads. Cases of STDs and HIV peaked in 1990 and slowly declined over the next six years, for a 69% overall reduction in STDs.¹⁴ The Indigenous People’s Task Force (IPTF) in Minneapolis, MN, promotes health and education for Native persons. Their Ogitchidag Gikinooamaagad (warrior/teachers) peer education/theater program provides youth with a comprehensive HIV/AIDS prevention curriculum, theater instruction and traditional teachings. IPTF’s programs have been acknowledged by the US Surgeon General.¹⁵ The Indian Health Care Resource Center (IHCRC) of Tulsa, OK provides a biweekly social group for two-spirit Native American men to help build a sense of community, self-esteem and reduce risk behaviors. IHCRC also hosts a relationship skills-building workshop which focuses on helping the participants determine what they want out of relationships, managing triggers to risk behavior and increasing negotiating skills. Each year, IHCRC offers a 4-day retreat with social, cultural and educational activities including traditional meals, a Powwow and stomp dancing.¹⁶

What still needs to be done?

AI/AN communities, although diverse in many ways, share a sense of pride, self- determination, spirituality, and resiliency which have helped them fight HIV infection in their communities. These efforts need to be encouraged to ensure sustained HIV prevention. This can only occur with cooperation and collaboration between the many agencies who work with AI/AN, including tribal health care systems, federal, state and local health departments and non-profit agencies. For example, complex funding streams need to be simplified to allow AI/AN communities greater access to prevention resources. HIV/AIDS must be made visible in AI/AN communities to prevent the spread of HIV. Visibility can be increased by collecting reliable HIV/AIDS data, including AI/AN in the design and delivery of HIV prevention programs, addressing AI/AN stigma about homosexuality and drug use, and linking to STD, violence, unintended pregnancy, and alcohol and drug abuse prevention programs.

Says who?

1. National Institutes of Health. Women of color health data book: adolescents to seniors. 1999. NIH publication #99-4247.www4.od.nih.gov/orwh/WOCEnglish.pdf (accessed January 2002). 2. Vernon I. Killing Us Quietly: Native Americans and HIV/AIDS. University of Nebraska Press, 2001. 3. Centers for Disease Control and Prevention. U.S. HIV and AIDS cases reported through December 2001, Year-end edition. HIV/AIDS Surveillance Report. 2001;13 (2). (accessed April 2006). 4. Rowell RM, Bouey PD. Update on HIV/AIDS among American Indians and Alaska Natives. The IHS Primary Care Provider. 1997;22:49-53. (accessed April 2006). 5. Thoroughman DA, Frederickson D, Cameron HD, et al. Racial Misclassification of American Indians in Oklahoma state surveillance data for sexually transmitted diseases. American Journal of Epidemiology. 2002;155(12): 1137-41. 6. Smith AS, Ahmed B, Sink L. US Census Bureau. An Analysis of State and County Population Changes by Characteristics: 1990-1999. Working Paper Series No. 45. (accessed April 2006). 7. Centers for Disease Control and Prevention. HIV/AIDS among American Indians and Alaskan Natives – United States, 1981-1997. Morbidity and Mortality Weekly Report. 1998;47:154-160. (accessed April 2006). 8. Morrison-Beedy D, Carey MP, Lewis BP, et al. HIV risk behavior and psychological correlates among Native American women: an exploratory investigation. Journal of Women’s Health and Gender-Based Medicine. 2001:10;487-494. 9. Indian Health Service. Trends in Indian Health–1997. U.S. Department of Health and Human Services, Public Health Service, Indian Health Service, Office of Planning, Education, and Legislation, Division of Program Statistics. 1998. 10. Baldwin JA, Maxwell CJ, Fenaughty AM, et al. Alcohol as a risk factor for HIV transmission among American Indian and Alaska Native drug users. American Indian and Alaska Native Mental Health Research. 2000;9:1-16. 11. Fisher DG, Fenaughty AM, Paschane DM, et al. Alaska Native drug users and sexually transmitted disease: results of a five-year study. American Indian Alaska Native Mental Health Research. 2000;9:47-57. 12. Potthoff SJ, Bearinger LH, Skay CL, et al. Dimensions of risk behaviors among American Indian youth. Archives of Pediatric and Adolescent Medicine. 1998;152:157-163. 13. National Native American AIDS Prevention Center. HIV Prevention for gay/bisexual/two-spirit Native American men. 1996. https://www.nnaapc.net/ (accessed April 2006). 14. Yost D, Hamstra S, Roosevelt L. HIV/AIDS and STD prevention in a rural Arizona Indian tribe. Presented at the International Conference on AIDS, Geneva, Switzerland. 1998. Abst #43162. 15. Indigenous People’s Task Force, 1433 East Franklin Ave. Suite 18A, Minneapolis, MN 55404. Contact Sharon Day 612/870-1723.www.indigenouspeoplestf.org (accessed January 2002). 16. Indian Healthcare Resource Center of Tulsa, 550 South Peoria, Tulsa, OK 74120. https://www.ihcrc.org/ (accessed January 2002).

Prepared by Ron Rowell MPH*, Paul Bouey PhD MPH** *San Francisco Foundation, **Pangaea Global AIDS Foundation January 2002. Fact Sheet #43E Special thanks to the following reviewers of this Fact Sheet: Joan Benoit, Lucy Bradley-Springer, Yvonne Davis, Sharon Day, Thomas Lee Eades, Sheila Fitzgibbons, Diane Morrison-Beady, Billy Rogers, Chris Sandoval, Delight E. Satter, Irene Vernon, Diane Williams, Charlton Wilson.

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]. © January 2002, University of California

What are Asian and Pacific Islanders’ HIV prevention needs?

revised 5/07

are APIs at risk?

Asians and Pacific Islanders (APIs) are one of the fastest growing ethnic populations in the United States.1 It is projected that by 2050, APIs together will comprise 8% of the total US population, or 34 million persons.^1,2 Asians and Pacific Islanders are extremely diverse and represent 49 different ethnic groups and over 100 languages. APIs include Chinese, Filipinos, Koreans, Hawaiians, Indians, Japanese, Samoans and Vietnamese, among other groups. Most APIs live in concentrated metropolitan areas such as Honolulu, HI; San Francisco, CA; New York City, NY and Los Angeles, CA.² Between 2001 and 2004, APIs represented less than 1% of all US HIV/AIDS cases, yet APIs had the highest estimated annual percentage increase in HIV/AIDS diagnosis rates of all race/ethnicities (8.1% for males and 14.3% for females).³ When populations such as APIs show low prevalence (overall numbers) but high increases in incidence (new diagnoses), prevention efforts are crucial to keep future HIV/AIDS cases low. Underreporting and a lack of detailed HIV surveillance mask the true nature of the epidemic among APIs. One study found that API AIDS diagnoses may be underreported by as much as 33%.⁴ This may in part be due to the misclassification of race and ethnicity in medical records, the source of information for case reports.^2,5 For example, persons with Filipino surnames may be mistakenly recorded as Latino. In addition, the lack of detailed demographic information on specific ethnicity and place of birth makes it difficult to track differences in the AIDS epidemic for API subpopulations and develop ethnically-targeted public health measures.²

who are APIs at risk?

HIV transmission in API men occurs mostly between men who have sex with men (MSM), followed by men who have high-risk heterosexual contact or are injection drug users (IDUs). In 2005, MSM transmission accounted for 71% of all API AIDS diagnoses to date.⁶ Among API women, HIV transmission occurs mostly when a woman has sex with a man who is at increased risk, followed by women who are IDUs.⁶ While API MSM are most affected by HIV/AIDS, diagnosis rates among API women have increased (14.3%), as noted above.³ The CDC does not categorize transgendered women (persons born as men but who identify and live as women), but one study showed a 13% HIV prevalence among API transgendered women in San Francisco, CA.⁷

what puts APIs at risk?

Among API MSM, social discrimination and the lack of family, peer and community support for sexual and racial diversity can negatively impact self-esteem and positive self-identity, thereby increasing their HIV risk. In one study, 57% of gay API men in San Francisco, CA, used alcohol prior to engaging in anal intercourse; approximately 24% reported unprotected anal intercourse. However, 85% believed they were unlikely to contract HIV.:9 APIs have significantly lower rates of HIV testing than the rest of the US population, despite reporting similar rates of risk behavior², and often delay seeking HIV services. In one study of young API MSM in San Francisco, CA, 24.4% of participants had never tested for HIV. Additionally, 2.6% tested HIV+, of whom 61.5% were unaware they were positive, and 38.5% reported recent unprotected sex¹⁰. Untested HIV+ APIs are more likely to engage in high-risk behaviors and unknowingly infect other persons.¹¹ Those that delay seeking services are at greater risk of presenting with advanced AIDS at diagnosis and acquiring co-infections like hepatitis B, tuberculosis and PCP.^5,12 Immigrant API women employed in massage parlors often engage in activities that put them at risk for HIV infection. However, for many of these women, immediate survival needs take priority over HIV prevention. Problems with the police, sex work, immigration, family planning, language barriers, and a lack of condom use policies in parlors all constitute risk factors for this population.¹³

what are barriers to prevention?

Although APIs are often stereotyped as the “model minority,” 17% of APIs lack health insurance and cannot receive adequate medical treatment and healthcare services.¹⁴ Because of limited API health and behavioral risk data, resources are often channeled to other populations, without assessing or acknowledging API healthcare needs.¹⁴ Among APIs, the cultural avoidance of issues such as sexual behavior, illness and death creates barriers to HIV prevention, breeds stigmatization and negatively impacts the psychological and mental health of those living with the illness.¹⁵ Approximately 40% of APIs are limited English proficient (low or no English skills)¹⁴, and few culturally competent intervention programs exist for ethnically, culturally and linguistically diverse API populations. One study found that language is the most common barrier to receiving healthcare services for APIs with HIV/AIDS.¹²

what’s being done?

There are many national and local programs that provide HIV prevention and education services for APIs, as well as capacity building and technical assistance efforts for agencies serving APIs.¹⁷ For example: The Asian and Pacific Islander Coalition on HIV/AIDS (APICHA) developed the Bridges Project, a community-based intervention to reduce disparities in care for HIV+ APIs in New York. It created linkages with hospitals and medical providers, provided case management and advocacy services and offered cultural competency training for providers. It was effective in improving service use and reducing barriers for non-English speaking, Asian-primary-language and undocumented participants.¹² Life Foundation, in Honolulu, HI, has been running community-level programs for Pacific Islander MSM and transgenders since 1999. “UTOPIA Hawai’i” is based on the Mpowerment model and has been very successful in reaching high risk Pacific Islanders that would have never accessed HIV services before.¹⁸ The Health Project for Asian Women (HPAW) addressed Asian female sex workers at massage parlors in San Francisco, CA, with two interventions: Massage Parlor Owner Education Program and Health Educator Masseuse Counseling Program. HPAW staff escorted masseuses to health clinics, handed out safer sex kits and provided translation, referrals and advocacy services. Masseuses participated in a 3-session counseling intervention and massage parlor owners received an education session.¹³ Asian & Pacific Islander Wellness Center conducted an anti-stigma HIV media campaign targeting Chinese communities of San Francisco, CA, using bus shelter posters, newspaper advertisements and a documentary featuring local community leaders, people living with HIV and their families. They also lead the annual National Asian & Pacific Islander HIV/AIDS Awareness Day with over fifteen events across the US to increase acceptance of HIV among families and A&PI communities.¹⁹

what needs to be done?

We have a golden opportunity to keep numbers low among APIs, but that opportunity may be disappearing quickly as APIs have the highest increases in HIV/AIDS diagnosis rates of any racial group in the US. HIV prevention programs for APIs should focus on those at greatest risk, including MSM, women, transgenders and substance users. Programs can help APIs develop and strengthen support systems, as well as focus on prevention and healthcare needs, such as early testing for HIV, hepatitis B and TB. More culturally and linguistically-appropriate prevention and healthcare services for APIs need to be developed and evaluated. Stigma around HIV, homosexuality, sex work and drug use should be addressed with anti-stigma campaigns that increase discussions on HIV/AIDS prevention and lead to greater acceptance of APIs living with HIV. Collaborating with policymakers and new partners such as faith-based organizations can help to address stigma among APIs. Given the enormous diversity among APIs in the US, it is important to improve surveillance systems and quality of data and consistently collect information on subpopulation ethnicity and birthplace.³ Research is needed on HIV and co-infections (hepatitis B and tuberculosis) and on acculturation and its relationship to HIV.

Says who?

1. Choi KH, Wong F, Sy FS. HIV/ AIDS among Asians and Pacific Islanders in the United States. AIDS Education and Prevention. 2005;17:iii-v. 2. Zaidi IF, Crepaz N, Song R, et al. Epidemiology of HIV/AIDS Among Asians and Pacific Islanders in the United States. AIDS Education and Prevention. 2005;17:405-417. 3. Racial/ethnic disparities in diagnoses of HIV/AIDS33 states, 2001-2004. Morbidity and Mortality Weekly Report. 2006;55:121-125. 4. Kelly JJ, Chu SY, Diaz T, et al. Race/ethnicity misclassification of persons reported with AIDS. Ethnicity & Health. 1996;1:87-94. 5. Wortley PM, Metler RP, Hu DJ, et al. AIDS among Asians and Pacific Islanders in the United States. American Journal of Preventative Medicine. 2000;18:208-214. 6. Cases of HIV infection and AIDS in the United States and dependent areas, 2005. HIV/AIDS Surveillance Report. 2006;17:37. 7. Operario D, Nemoto T. Sexual risk behavior and substance use among a sample of Asian Pacific Islander transgendered women. AIDS Education and Prevention. 2005;17:430-443. 8. Wilson PA, Yoshikawa H. Experiences of and responses to social discrimination among Asian and Pacific Islander gay men: Their relationship to HIV risk. AIDS Education and Prevention. 2004;16:68-83. 9. Choi KH, Operario D, Gregorich SE, et al. Substance use, substance choice, and unprotected anal intercourse among young Asian American and Pacific Islander men who have sex with men. AIDS Education and Prevention. 2005;17:418-429. 10. Do TD, Chen S, McFarland W, et al. HIV testing patterns and unrecognized HIV infection among young Asian and Pacific Islander men who have sex with men in San Francisco. AIDS Education and Prevention. 2005;17:540-554. 11. Wong F, Campsmith ML, Nakamura GV, et al. HIV testing and awareness of care-related services among a group of HIV-positive Asian Americans and Pacific Islanders in the United States: Findings from a supplemental HIV/AIDS surveillance project. AIDS Education and Prevention. 2004;16:440-447. 12. Chin JJ, Kang E, Haejin Kim J, et al. Serving Asians and Pacific Islanders with HIV/AIDS: Challenges and lessons learned. Journal of Health Care for the Poor and Underserved. 2006;17:910-927. 13. Nemoto T, Iwamoto M, Oh HJ, et al. Risk behaviors among Asian women who work at massage parlors in San Francisco: Perspectives from masseuses and owners/managers. AIDS Education and Prevention. 2005;17:444-456. 14. Ghosh C. Healthy People 2010 and Asian Americans/Pacific Islanders: Defining a baseline of information. American Journal of Public Health. 2003;93:2093-2098. 15. Kang E, Rapkin BD, Remien RH, et al. Multiple dimensions of HIV stigma and psychological distress among Asians and Pacific Islanders living with HIV illness.AIDS and Behavior. 2005;9:145-154. 16. API Capacity Building programs 17. Takahashi LM, Candelario J, Young T, et al. Building capacity for HIV/AIDS prevention among Asian and Pacific Islander organizations: The experience of a culturally appropriate capacity-building program in southern California. Journal of Public Health Management and Practice. 2007:S55-S63. 18. Utopia Hawai’i 19. API Wellness antistigma campaign

Prepared by Roshan Rahnama, Nina Agbayani, Stacy Lavilla,* John Chin, PhD** *Association of Asian Pacific Community Health Organizations (AAPCHO), **NY Academy of Medicine May 2007. Fact Sheet #33ER Special thanks to the following reviewers of this fact sheet: Vince Crisostomo, Chandak Ghosh, Erin Kahle, Saori Miyazaki, Lina Sheth, Lois Takahashi, Ed Tepporn, Peter Tuiolosega Silva. 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. To receive Fact Sheets via e-mail, send an e-mail to [email protected] with the message “subscribe CAPSFS first name last name.” ©May 2007, University of CA.

What Are Deaf Persons’ HIV Prevention Needs?

Are deaf persons at risk for HIV?

Yes. It is estimated that 7,000 to 26,000 deaf persons in the US are infected with HIV.¹ However, the Centers for Disease Control and Prevention (CDC) does not currently collect information on deafness and HIV or AIDS. Maryland was the first state to include questions about deafness in its HIV counseling and testing forms. In Maryland, 4.3% of the deaf population is HIV+ (infected with HIV).² There are about two million deaf Americans, and one out of every ten Americans has some hearing loss. The deaf have long struggled for equal access to medical and social services, and equality in jobs and education. In the US today, there is still very little information on HIV and deafness, few prevention or treatment services and scarce research.³

What are risk factors for HIV?

High rates of substance use exist among the deaf community. One in seven (1 in 7) deaf persons has a history of substance abuse, compared to one in ten (1 in 10) in the hearing population. Substance abuse can be a riskfactor for HIV by lowering inhibitions and impairing judgement, which can lead to unsafe sexual behaviors. Sharing injection equipment is also a risk for HIV transmission. There is very little HIV or sexuality education in schools for the deaf, especially for adolescents. Because of this, deaf persons have much less knowledge and awareness of HIV transmission, prevention and treatment. If deaf children don’t learn about HIV and other sexually transmitted diseases, they won’t have the vocabulary necessary to talk about thse topics with each other. One study of students at schools for the deaf found that adolescents in 9-12 grade had extremely limited knowledge of AIDS. Students knew correct answers to only 8 of 35 basic questions asked about AIDS.⁴ Deaf men who have sex with men (MSM) may face discrimination from within the deaf community. For this reason, deaf MSM often conceal their identity and may engage in furtive, anonymous and high risk sexual behaviors. Many deaf MSM also seek out hearing MSM for relationships, which makes communication about safer sex practices difficult.³ Children with disabilities, including deaf children, have been found to be at greater risk for sexual abuse, both at residential schools and at home. One study of deaf and hearing children at a language institute found that 54% of the deaf boys reported abuse, compared to 10% of hearing boys. Deaf girls reported 50% rates of abuse, compared to 25% of hearing girls. Childhood sexual abuse is a strong indicator for risky sexualand substance use behavior and HIV infection as an adult.⁶

What are barriers to prevention?

For the majority of deaf persons in the US, American Sign Language (ASL) is their primary language, and English the second language. ASL is a complex language of signs and gestures with its own grammar and syntax. The only way to communicate in ASL is face to face. There are only sporadic materials on HIV/AIDS available in written, graphic ASL. Although some deaf persons can read written materials such as pamphlets used in HIV prevention, for deaf persons with limited English skills, they are ineffective.⁷ ASL communicates largely in concepts, so many English phrases and idioms don’t make sense to persons with limited language skills. For example, there is no word for AIDS in ASL, and HIV-positive cannot be interpreted in ASL because “positive” means something good. ASL interpreters for HIV/AIDS issues may require special training to be able to address openly and frankly complex issues of sexuality and drug use. The deaf community is very tight knit, which can offer strong support and strong condemnation at times. Confidentiality is very important in this community where news travels fast. Many deaf persons would rather go alone to an all-hearing HIV testing and counseling clinic and risk miscommunication and misunderstanding, than bring an interpreter or go to a deaf clinic and risk being recognized and losing confidentiality.⁸ Home test kits are no more confidential, as deaf persons must use an interpreter using a regular phone or call through a Relay Service agent to get test results.

What can help in prevention?

Better understanding of the strengths of the deaf community can help HIV prevention efforts. Because the deaf community is tight knit, there is a greater degree of physical and emotional intimacy. The visual nature of ASL requires addressing sexual and drug use issues openly and frankly. When these topics are brought up, deaf persons often have greater comfort discussing sexuality and drug use, which can help in understanding and negotiating safer behaviors.⁸ Deaf institutions must address issues that have traditionally been hidden or taboo in their community, such as alcohol and drug abuse, childhood sexual abuse and homophobia. In 1998, the National AIDS Hotline sent over a thousand letters to state schools for the deaf offering an educational program on AIDS for deaf or hard of hearing students. Only three schools responded to the program.⁷

What’s being done?

A program developed by Gallaudet University’s Mental Health Center provides HIV/AIDS training to mental health professionals who work with deaf persons. The training program provides visual tools to use with the deaf community, such as captioned videos, drawings, group activities and models of how HIV attaches to cells.⁹ In Paris, France, a mobile AIDS prevention unit (EMIPS in French) used a variety of programs to target deaf adolescents both in and out of deaf schools. A young deaf educator visited deaf schools and presented an intervention in sign language. The program created several visual images in public ads that dealt with false beliefs about HIV risk. The program also opened a walk-in HIV testing clinic with a doctor using sign language. However, the clinic was not widely used because it was too much identified with AIDS. When the program opened a sign language HIV test center in a general clinic, it was much more successful.¹⁰ The Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals provides treatment for alcohol and other drugs for deaf persons in the US and Canada. All staff members are specially trained in deafness and substance abuse, and they have developed therapeutic approaches without communication barriers. The program also provides training for students and professionals working with deaf persons. They have a resource center that disseminates materials and provides funding for interpreters to attend AA/NA meetings.¹¹

What still needs to be done?

Comprehensive education and outreach are needed in the deaf community, not just around AIDS and HIV, but around the larger issues of sexual health and substance use. Schools for the deaf need to provide education about sexuality and substance use and provide counseling for children and adolescents who have experienced abuse. Programs for the deaf should address issues specific to the deaf community, such as negotiating safer sex with a hearing partner, advocating for health care services and breaking down barriers about sexual abuse and substance abuse among deaf persons. HIV prevention programs for deaf persons need to be as clear and as visual as possible. Programs should not be designed as presentations alone, but should incorporate physical activities, longer time for discussions, pictures, dolls, graphic manuals in ASL and captioned videos to make sure concepts are understood.¹² To access deaf communities, rearchers and service providers should take advantage of advances in technology such as interactive video and the Internet.¹³ Although there has been effort to educate the deaf community on HIV/AIDS at all levels, there continue to be great discrepancies in getting crucial information out to the target population. The CDC and states need to add questions about disabilities when collecting HIV statistics in order to document the extent of the epidemic in the deaf population. More programs are needed to help increase knowledge and dispel myths about HIV transmission and risk behaviors of deaf persons. The few popular programs that exist need to be evaluated and replicated across the country.

Says who?

1. Friess S. Silence = Deaf . Poz Magazine. April 1998. p.60-63. 2. Personal communication. Department of Health and Mental Hygiene, State of Maryland. 1999. 3. Peinkoffer JR. HIV education for the deaf, a vulnerable minority . Public Health Reports. 1994;109:390-396. 4. Baker-Duncan N, Dancer J, Gentry B, et al. Deaf adolescents’ knowledge of AIDS. Grade and gender effects . American Annals of the Deaf. 1997;142:368-372. 5. Sullivan PM, Vernon M, Scanlan JH. Sexual abuse of deaf youth . American Annals of the Deaf. 1987;132:256-262. 6. Johnsen L, Harlow L. Childhood sexual abuse linked with adult substance use, victimization, and AIDS-risk . AIDS Education and Prevention. 1996;80:44-57. 7. Campbell D. AIDS and the deaf community. ADVANCE for Speech-Language Pathologists & Audiologists. April 26, 1999; p.10-11. 8. Morrone JJ. Peer education and the deaf community. Journal of American College Health. 1993;41:264-266. 9. Sleek S. HIV/AIDS education efforts have missed deaf community. American Psychological Association Monitor. 1999. 10. Grivois L, Houette A. Outreach programs towards deaf people targeting prevention of AIDS. Presented at the 11th International Conference on AIDS, Vancouver, Canada. June 1996. Abst. #MoD240. 11. Program celebrates ten years. Steps to Recovery. Published by the Minnesota Chemical Dependency Program for Deaf and Hard of Hearing Individuals. Spring/Summer 1999. 12. Gaskins S. Special population: HIV/AIDS among the deaf and hard of hearing. Journal of the Association of Nurses in AIDS Care. 1999;10:75-78. 13. Lipton DS, Goldstein M, Wellington Fahnbulleh F, et al. The interactive video-questionnaire: a new technology for interviewing deaf persons . American Annals of the Deaf. 1999;141:370-378.

Resources:

AIDSinfo 1-888-480-3739 TTY  Service American Social Health Association 1-202-777-2500  -TTY https://www.ashasexualhealth.org/

Prepared by Brian Determan* Natasha Kordus ** and Pamela DeCarlo*** *Montrose Clinic, Houston, TX, **California School for the Deaf, ***CAPS September 1999. Fact Sheet #36E

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]. © September 1999, University of California