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Qualitative Survey: HIV Testing and Counseling among Injection Drug Users
The following survey was used with Project Access, a qualitative needs assessment commissioned by the California State Office of AIDS and the Centers for Disease Control and Prevention to examine counseling and testing utilization and prevention programs through the perspective of drug-using clients. The instrument is designed to assess: 1) the behavioral, psychosocial, and social risk factors that influence high-risk drug users’ decisions to test for HIV; 2) the service delivery factors that influence high-risk drug users’ decision to test for HIV; 3) how high-risk drug users employ HIV testing in personal prevention strategies; and 4) how knowledge of HIV test results affects risk behavior. Instrument: Qualitative interview instrument Scoring: N/A Reliability and/or validity: N/A
The Measurement Group Evaluation & Research Tools
Hepatitis C
Can hepatitis C (HCV) transmission be prevented?
Prepared by Alice Asher RN, MS, CNS and Kimberly Page PhD MPH Fact Sheet: 46 September 2010
What is the hepatitis C virus (HCV)?
Hepatitis C virus is blood borne virus affects the liver. It is principally acquired and transmitted by blood-to-blood contact, most commonly among injection drug users (IDU). Other common infectious viruses that affect the liver are Hepatitis A and B which have other routes of infection. Unlike hepatitis A and B, there is no vaccine for HCV. About 3.2 – 4 million Americans are estimated to be infected with HCV.1 In the US, 8,000 to 10,000 deaths per year are attributed to HCV-associated liver disease and that is expected to triple in the next 10-20 years.
Who’s at risk for HCV?
The population at highest risk for HCV are people who inject drugs; principally through sharing of syringes directly or through sharing of drug preparation equipment. Among newly reported HCV cases with known risk factors, 50%-60% are attributable to injecting drugs. However, this may be underestimated due to underreporting both due to the illicit nature of IDU and lack of HCV surveillance in high risk groups.2 HCV is usually acquired rapidly after a person first starts injecting drugs. As a result, prevalence of HCV among IDU is very high, ranging from 40-90%, depending on a person’s age and number of years injecting.3 Persons who received blood transfusions or an organ transplant before 1992 and hemophiliacs who received clotting factor concentrates before 1987 are also at risk for HCV. At moderate risk are persons receiving continual care (hemodialysis) for kidney failure. Others at risk include healthcare workers exposed to needlesticks with HCV+ blood.and, rarely, infants born to infected mothers. Sexual transmission of HCV is uncommon, although recent studies of HIV+ gay men show that it does occur.4Rough sex, fisting, sex with multiple partners and having a sexually transmitted disease (STD) or HIV appear to increase a person’s risk of HCV.5 This is likely due to blood contact during sex.
What does HCV infection look like?
HCV infection can range of in severity from a mild illness lasting a few weeks to a serious, lifelong illness that damages the liver.5 The majority of people infected with HCV do not experience symptoms related to their infection. Because of this, testing is the only way to confirm HCV infection. The first period after HCV infection is referred to as the “acute” period. Acute HCV infection generally lasts about 6 months after someone is infected with the virus. About 25% of people who become infected with HCV will spontaneously clear the virus on their own in the first 6 months. Studies have shown that women are more likely to spontaneously clear the virus than men. Even for those who have cleared HCV, re-infection can occur. While many who become re-infected will clear the virus again, this is not guaranteed, and a subsequent infection may become chronic. Those who do not clear or resolve their HCV infection are considered chronically infected. Most people with chronic infection remain asymptomatic for 20-30 years, and some will never develop symptoms of advanced disease. However, 60-70% of people with chronic HCV ultimately will develop some degree of liver disease.5 People with chronic infection whose liver disease has started to progress often report increasing levels of fatigue and stomach pain. The symptoms of chronic HCV are often are vague and unspecific and may go undiagnosed. This again underlines the importance of testing for anyone at risk of HCV. Chronic HCV infection causes liver damage that can turn into cirrhosis (scarring of the liver) and liver cancer.5 Up to 20% of chronically infected individuals will develop cirrhosis and 5% will develop liver cancer. Alcohol and drugsincluding marijuana and even tobaccocan speed up the rate of liver damage significantly.
Can HCV be treated?
The short answer is yes, there is a treatment for HCV, but currently available treatments will not work for everybody. Before starting a treatment regimen, it is important to stabilize any mental or other health problems. Undergoing antiviral treatment for HCV is a long, difficult and expensive process, so determining whether treatment is the right choice is a decision that should be made between a patient and a care provider. There are two approved antiviral medications used for the treatment of HCV: pegylated interferon alpha (often referred to as “peg”) and ribavirin. Peg interferon is taken by injection once a week. Ribavirin is an oral tablet that is taken daily. When taken together, the medications are effective in clearing the HCV virus 40-80% of the time, depending on the genotype of the virus.7 Hepatitis C has 6 chemical types (1-6), called genotypes, and they differ in how they respond to treatment. People of color, especially African-Americans and Latinos, have lower response rates to treatment, compared to other groups.7 New drugs are being developed that may be more effective than currently available treatments and may be available in the very near future. Treatment during the acute phase of infection is significantly more likely to be effective8, so identifying HCV early can be beneficial. While herbal remedies are popular among people living with HCV, none have been proven effective at clearing the HCV virus or in improving liver health.9 HCV treatment can be successful for active drug users. Nonetheless, daily drug and alcohol use can adversely affect treatment eligibility and completion. Engaging in drug or alcohol treatment programs while being treated for HCV can be helpful.
How does HCV affect HIV?
About one-quarter of all people in the US living with HIV are also infected with HCV. Persons who are both HIV+ and HCV+ (coinfected), can experience a much faster progression of liver disease and have higher HCV viral loads and higher rates of cirrhosis than do people who have HCV but not HIV.10 Liver damage from HCV infection also can increase the toxicity of medications used to treat HIV. As persons living with HIV who are on effective medications lead longer lives, liver disease has become the leading cause of non-AIDS-related deaths among HIV+ persons, due to HCV and HBV infection.11 Treatment for HCV infection in an HIV+ person can be effective. Side effects and drug interactions, however, can be hard to manage. It is important the coinfected person be on well-managed HIV treatment before starting treatment for HCV.
How can HCV be prevented?
HCV prevention can take many forms.12 Currently, targeted prevention strategies and harm reduction programs, including increased availability of clean syringes and increased access to drug treatment programs have the greatest potential to slow transmission of HCV. Educating those at risk, especially about the risks associated with shared injecting and ancillary equipment is very important. Encouraging the use of condoms, lubrication and gloves during high-risk sexual practices also can help reduce HCV transmission. Behavioral risk reduction prevention programs have had mixed results in decreasing risks associated with HCV transmission. Two peer-led interventions were effective in reducing injection risk behaviors in HIV negative and positive IDUs. The Study to Reduce Intravenous Exposures (STRIVE) and Drug Users Intervention Trials (DUIT) both provided information, enhanced risk-reduction skills, and motivated behavior change through peer education training. Although participants in these programs reported decreases in sharing syringes and drug preparation equipment,13,14 rates of new HCV infections among HCV negative participants in the DUIT Study did not decrease (neither did HIV infections). The UFO Study conducts HCV-related research and provides hepatitis, HIV and STD prevention services including testing, counseling, support and education tailored to young adult IDUs under age 30 in San Francisco, CA. Young injection drug users comprise a group for whom few health-related resources or programs are targeted.15 For persons who are infected with HCV or at risk of becoming infected with HCV, it is important to get regular healthcare. A healthcare provider can help monitor HCV infection and liver health and make important decisions about prevention and treatment. Support and education groups are valuable in learning more about HCV infection and about the experience of living with HCV, treating HCV and preventing HCV transmission to others. People infected with HCV should be screened and vaccinated for HBV and should be strongly encouraged to stop or decrease alcohol use.
What needs to be done?
Over the next 15 years, the global costs associated with HCV infection are projected to increase from $30 billion to $85 billion.16 Development of an HCV vaccine will significantly decrease rates of new HCV infections. Research is needed on the development of a vaccine and effective models for delivery. Increasing access to HCV testing and screening, HCV treatment, drug treatment, clean syringes and effective behavioral interventions is crucial.
Says who?
1. Armstrong GL, Wasley A, Simard EP, et al. The prevalence of hepatitis C virus infection in the United States, 1999 through 2002. Annals of Internal Medicine. 2006;144:705-714. 2. Hagan H, Snyder N, Hough E, et al. Case-reporting of acute hepatitis B and C among injection drug users. Journal of Urban Health. 2002;79:579-585. 3. Hagan H, Pouget ER, Des Jarlais DC, et al. Meta-regression of hepatitis C virus infection in relation to time since onset of illicit drug injection: the influence of time and place. American Journal of Epidemiology. 2008;168:1099-1109. 4. Urbanus AT, van de Laar TJ, Stolte IG, et al. Hepatitis C virus infections among HIV-infected men who have sex with men: an expanding epidemic. AIDS. 2009;23:F1-7. 5. Hepatitis C Fact Sheet. Prepared by the Centers for Disease Control and Prevention. 6. Page K, Hahn JA, Evans J, et al. Acute hepatitis C virus infection in young adult injection drug users: a prospective study of incident infection, resolution, and reinfection. Journal of Infectious Diseases. 2009;200:1216-1226. 7. Ghany MG, Strader DB, Thomas DL, et al. Diagnosis, management, and treatment of Hepatitis C: An update. Hepatology. 2009;49:1335-1374. 8. Kamal SM. Acute hepatitis C: a systematic review. American Journal of Gastroenterology. 2008;103:1283-1297 9. Liu JP, Manheimer E, Tsutani K, et al. Medicinal herbs for hepatitis C virus infection. Cochrane Database of Systematic Reviews. 2001;4. 10. Verucchi G, Calza L, Manfredi R, et al. Human immunodeficiency virus and hepatitis C virus coinfection: epidemiology, natural history, therapeutic options and clinical management. Infection. 2004;32:33-46. 11. Tuma P, Jarrin I, Del Amo J, et al. Survival of HIV-infected patients with compensated liver cirrhosis. AIDS. 2010;24:745-753. 12. Page-Shafer K, Hahn J, Lum PJ. Preventing hepatitis C virus infection in injection drug users: risk reduction is not enough. AIDS. 2007;21:1967-1969. 13. Latka MH, Hagan H, Kapadia F, et al. A randomized intervention trial to reduce the lending of used injection equipment among injection drug users infected with hepatitis C. American Journal of Public Health. 2008;98:853-861. 14. Garfein RS, Golub ET, Greenberg AE, et al. A peer-education intervention to reduce injection risk behaviors for HIV and hepatitis C virus infection in young injection drug users. AIDS. 2007;21:1923-1932. 15. Lum PJ, Ochoa KC, Hahn JA, et al. Hepatitis B virus immunization among young injection drug users in San Francisco, Calif: the UFO Study. American Journal of Public Health. 2003;93:919-23. 16. Shah BB, Wong JB. The economics of hepatitis C virus. Clinics in Liver Disease. 2006;10:717-34.
Special thanks to the following reviewers of this Fact Sheet: Laura Mae Alpert, Orlando Chavez, Myrna Cozen, Richard Garfein, Holly Hagan, Judy Hahn, Emalie Huriaux, Steve Livingston, Megan Mahoney, Brian McMahon, Jay Ryan, Jim Stillwell, Leslie Tobler, Anouk Urbanus. 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.” ©September 2010, University of CA. Comments and questions about this Fact Sheet may be e-mailed to [email protected].
Disclosure assistance (PCRS)
What is the role of disclosure assistance services in HIV prevention?
why assistance for disclosure?
After more than 20 years of the HIV epidemic, with advances in treatment and increases in understanding and acceptance of HIV, getting an HIV+ diagnosis still can be a traumatic experience. HIV+ persons must come to terms with their own infection and be concerned with possible infection in past and future partners. Talking to partners about HIV is especially hard because even though it is a manageable disease, HIV still is not curable. Disclosure assistance services (also known as partner counseling and referral services or PCRS) are an array of voluntary and confidential services available to persons living with HIV and their exposed sex and/or needle-sharing partner(s). Disclosure assistance is cost effective and can play a critical role in identifying those individuals most at risk for HIV infection, and linking those who are infected to early medical care and treatment.1,2,3 Most HIV+ persons make the decision to disclose or not disclose to their partners on their own. But HIV+ persons may want support for telling their partners about HIV, whether by encouragement for self-disclosure or by having someone who is well-trained carefully and confidentially notify a partner for them. In one study, persons who received disclosure assistance were over three times more likely to have informed a partner of their risk.4 In the past few years, HIV counseling and testing programs across the US have shifted their emphasis from testing anyone, to finding and testing persons at greatest risk for HIV infection.5 At general HIV testing sites, around 1% of clients tested are found to be HIV+, whereas 8-39% of clients tested through disclosure assistance are found to be HIV+.2
what is disclosure assistance?
Often, disclosure assistance or PCRS mistakenly has been seen as only provider disclosure, but there are three forms of assistance: Self disclosure–The client chooses to notify a partner him/herself. The disclosure assistance provider guides and prepares the client before disclosure. Currently, most HIV+ persons choose this method. Dual disclosure–The client chooses to notify a partner in the presence of a provider. The provider supports the client during disclosure and acts as a resource for the partner. This method is rarely chosen and requires highly skilled providers. Provider disclosure (anonymous third party)–The client prefers a professional to notify a partner, and gives his/her provider identifying and locating information for partner(s). Most often, providers give this info to Disease Intervention Specialists (DIS) who then locate and notify the named partners, keeping client identity strictly confidential. This method is chosen less often, yet it is the only one with client anonymity. For the partners of an HIV+ client, disclosure assistance services can include: being notified of exposure to HIV, HIV prevention counseling, HIV testing options, referrals for HIV medical evaluation if positive and referrals for other social or medical services.6
how does it work?
Disclosure assistance services are first offered when a person receives a positive HIV test result. It is not a one-time only service, but should be offered as clients’ risk circumstances and needs change. The main element is helping HIV+ persons tell their sexual and/or needle-sharing partners about possible HIV exposure. The quality and use of disclosure assistance services can vary widely. Services differ from state to state: some have legal mandates to provide it, some offer it through HIV, STD or combined HIV/STD programs, and states can receive referrals from clinicians, health departments or testing sites.7 Services can be provided by HIV service agencies, health departments and most clinics and hospitals. Most service agencies can provide coaching and support for self or dual disclosure and gather partner identifying and locating information which is forwarded to DIS staff. Most notification of partners has been done by DIS at local health departments because they have the capacity, expertise, trained staff and protection from liability. Good provider disclosure depends on DIS staff who are properly trained and have enough experience and knowledge of the populations they serve. DIS staff should be evaluated regularly to assure quality and be provided with support and ongoing training.6
what are the concerns?
Public health messages have traditionally urged disclosure to all sexual and drug using partners. In reality, disclosure is complex and difficult. Some HIV+ persons may fear that disclosure will bring partner or familial rejection, limit sexual opportunities, reduce access to drugs of addiction or increase risk for physical and sexual violence. Because of this, some HIV+ persons choose not to disclose. Programs need to accept that not disclosing is a valid option. Many HIV service agencies and testing and counseling sites routinely offer self disclosure and dual disclosure, working with HIV+ clients by preparing and supporting them to disclose to partners on their own. Although provider disclosure services have been used for many years with other STDs, there is a wide variety in rates of acceptance of provider disclosure in HIV: in North Carolina, 87% of newly diagnosed HIV+ persons accepted provider disclosure,8 in Florida 63.1%,9 Los Angeles, CA 60%,10 New York State 32.9%,12 Seattle, WA 32% and among anonymous testers in San Francisco, CA 3.1%.13 In Los Angeles, the most common reasons for refusal were: already notified partner (23.4%), not being ready to disclose (15.3%), being abstinent (15%) and having an anonymous partner (11%).10 Disclosing HIV status to partners can be scary, but also can be empowering. In one study, HIV+ injection drug users who disclosed their status found increased social support and intimacy with partners, reaffirmation of their sense of self and the chance to share experiences and feelings with sexual partners. Another study of HIV+ persons and their partners who received disclosure assistance found that emotional abuse and physical violence decreased significantly after notification.15
what’s being done?
Florida utilizes trained DISs to deliver disclosure assistance for all reported new HIV infections. In 2004, 63.1% of all newly infected HIV+ persons accepted provider disclosure, identifying 4,460 sex or needle-sharing partners. Among those, 21.8% had previously tested HIV+. Of the 2,518 persons notified, 84.2% agreed to counseling and testing and 11.5% were HIV+.9 The Massachusetts Department of Public Health piloted a client-centered model of disclosure assistance that is integrated into the client’s routine prevention, care and support services. The program required significant changes to the standard model of DIS provider disclosure, building close relationships between service providers and DIS to better support clients’ disclosure needs while protecting confidentiality.16 California instituted a voluntary disclosure assistance program that includes counseling and preparing HIV+ persons for self disclosure; anonymous third party provider notification; counseling, testing and referrals for notified partners; and training and technical assistance to providers in public and private medical sites. About one-third of patients opted for provider disclosure and 85% referred partners. Of the partners located, 56% tested for HIV and half had never tested before. Overall, 18% of partners tested HIV+.4
what needs to be done?
New HIV testing technologies can be useful with disclosure assistance services. Improved rapid testing is a potential invaluable tool for offering HIV tests in the field to notified partners. Nucleic acid amplification testing (NAAT) can determine acute infections, that is, new HIV infections that do not show up during the window period of other HIV tests. Combining these testing strategies with disclosure assistance can help identify newly infected persons and provide immediate counseling, support and referrals to medical or social services as needed.17 Disclosure assistance services, and particularly provider disclosure, may need extensive changes from the traditional DIS model in order to work well and be accepted within HIV services. Health departments could forge closer ties between their STD and HIV programs and with outside service agencies. HIV staff also can be trained to be DIS providers to broaden access to and comfort with disclosure services. Disclosure assistance services should be made available not only upon HIV diagnosis, but on an ongoing basis as HIV+ persons’ circumstances and needs change. It is not the role of providers to decide if a client will need or want disclosure assistance, but to offer clients support and choices, whether or not a client chooses to disclose. Prepared by Fern Orenstein MEd, CA STD Control Branch, Prevention Training Center
Says who?
1. Landis SE, Schoenbach VJ, Weber DJ, et al. Results of a randomized trial of partner notification in cases of HIV infection in North Carolina. New England Journal of Medicine. 1992;326: 101-106. 2. Golden MR. Editorial: HIV partner notification, a neglected prevention intervention. Sexually Transmitted Diseases. 2002;29:472-475. 3. Varghese B, Peterman TA, Holtgrave DR. Cost-effectiveness of counseling and testing and partner notification: a decision analysis. AIDS. 1999;13:1745-1751. 4. Eckert V. Utilization of voluntary HIV partner counseling and referral services. California Office of AIDS & STD Control Branch. Presented at the Statewide PCRS Conference, May 2004. 5. Centers for Disease Control and Prevention. Advancing HIV Prevention: New Strategies for a Changing Epidemic – US, 2003. Morbidity and Mortality Weekly Report. 2003:52;329-332.http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5215a1.htm (accessed April 2006). 6. HIV partner counseling and referral services guidance. Centers for Disease Control and Prevention. 1998. https://www.cdc.gov/hiv/guidelines/partners.html 7. Aldridge C, Randall L. Implementing partner counseling and referral services programs. Presented at the National HIV Prevention Conference, Atlanta, GA. 2005. Abst #TO-057. 8. Centers for Disease Control and Prevention. Partner counseling and referral services to identify persons with undiagnosed HIV–North Carolina, 2001. Morbidity and Mortality Weekly Report. 2003;52:1181-1184.http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5248a4.htm (accessed April 2006). 9. George D. Partner counseling and referral services (PCRS): the Florida experience. Presented at the National HIV Prevention Conference, Atlanta, GA. 2005. Abst #M3-B1605. 10. Aynalem G, Hawkins K, Smith LV, et al. Who and why? Partner counseling and referral service refusal: implication for HIV infection prevention in Los Angeles. Presented at the National HIV Prevention Conference, Atlanta, GA. 2005. Abst #MP-036. 11. Birkhead G. HIV partner counseling and referral services in New York state. Presented at the National HIV Prevention Conference, Atlanta, GA. 2005. Abst #M3-B1603. 12. Golden MR. Partner notification: where do we stand and outstanding barriers. Presented at the National HIV Prevention Conference, Atlanta, GA. 2005. Abst #T3-D1302. 13. Schwarcz S, McFarland W, Delgado V, et al. Partner notification for persons recently infected with HIV: experience in San Francisco. Journal of Acquired Immune Deficiency Syndrome. 2001;28:403-404. 14. Parsons JT, Vanora J, Missildine W, et al. Positive and negative consequences of HIV disclosure among seropositive injection drug users. AIDS Education and Prevention. 2004;16:459-475. 15. Kissinger PJ, Niccolai LM, Magnus M, et al. Partner notification for HIV and syphilis: effects on sexual behaviors and relationship stability. Sexually Transmitted Diseases. 2003;30:75-82. 16. Cranston K. Planning for HIV partner counseling and referral services in the third decade. Presented at the National HIV Prevention Conference, Atlanta, GA. 2005. Abst #T3-D1301. 17. Pilcher CD, Fiscus SA, Nguyen TQ, et al. Detection of acute infections during HIV testing in North Carolina. New England Journal of Medicine. 2005;352:1873-1883.
September 2005. Fact Sheet #53ER 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]. ©Sepetmber 2005, University of California
Transgender men
What are transgender men’s HIV prevention needs?
Prepared by Jae Sevelius, CAPS; Ayden Scheim and Broden Giambrone, Gay/Bi/Queer Trans Men’s Working Group, Ontario Gay Men’s Sexual Health Alliance Fact Sheet 67 – Revised September 2015
Who are transmen?
Transgender (‘trans’) is an umbrella term for people whose gender identity and expression do not conform to norms and expectations traditionally associated with their sex assigned at birth. Transgender men, or transmen, are people who were assigned ‘female’ at birth and have a male gender identity and/or masculine gender expression. Transgender people may self-identify and express their gender in a variety of ways and often prefer certain terms and not others. Some who transition from female to male do not identify as transgender at all, but simply as men. In general, transmen should be referred to with male pronouns. However, if you are unsure it is best to respectfully ask a person what terms and pronouns they prefer. Accurate information about the diversity of transmen’s bodies is not widely available. Transmen have different types of bodies, depending on their use of testosterone and gender confirmation surgeries (which may include chest reconstruction, hysterectomy, metoidioplasty, phalloplasty1, etc.; see www.ftmguide.org for further information). Transmen use a broad range of terms and language to identify their sex/gender, describe their body parts, and disclose their trans status to others. For instance, some transmen are not comfortable with the terms ‘vagina’ and ‘vaginal sex’ and may prefer ‘front hole’ and ‘front sex’ or ‘front hole sex’, although this is not true for all transmen. This diversity creates unique needs and barriers for negotiating and adhering to safer sex practices that are not addressed by current HIV prevention programs.
What do we know about HIV and transmen?
The transgender community is diverse and not enough research has been conducted with trans people in general. We have very limited information about transmen in particular. To date, research related to HIV among trans people has almost exclusively focused on transwomen (people who were assigned ‘male’ at birth and have a female gender identity and/or feminine gender expression). However, there is evidence that there is a significant subgroup of transmen that engage in unprotected sex with non-trans men (trans MSM), including some transmen who engage in sex work. Several cities have conducted needs assessments that focus on or are inclusive of transmen and HIV risk, such as Philadelphia, Washington D.C, San Francisco, and the province of Ontario. The few published studies that report HIV rates among samples of transmen have reported 0–3% prevalence.2,4 These rates are self-reported, however, and are based on small, non-representative samples, so we do not have conclusive data about the actual rates. Due to the assumption of low rates of HIV among transmen relative to other high-risk groups, there has not been much research on risk behaviors among transmen. We do know that HIV prevention messages are not reaching most transmen.5 We also know that many trans MSM seek services at gay men’s organizations, where there is little to no education for transmen and their non-trans male partners.4 Providers are generally not trained to identify or serve gay and bisexual transmen in culturally sensitive ways or understand their specific risks and prevention needs.
What don’t we know about HIV and transmen?
We do not have enough information about HIV and transmen. Data collection methods at testing sites do not accurately identify and track transmen or capture their experiences, which contributes to the lack of clarity around HIV rates among transmen. Rates of HIV and sexual risk behaviors among transmen are also not well understood because transmen are often assumed to be primarily having sex with non-trans women. However, transmen, like other men, can be of any sexual orientation and may have sex with different types of partners, including (but not limited to) non-trans men, transgender women, and transgender men.6,7
What puts transmen at risk?
In one study, a majority of trans MSM reported not using condoms consistently during receptive anal and/or frontal (vaginal) sex with non-trans male partners and low rates of HIV testing and low perception of risk.4 In urban areas where HIV prevalence rates among non-trans MSM are estimated to be 17-40% and STI rates are increasing, trans MSM who engage in unprotected receptive anal and/or frontal (vaginal) intercourse with non-trans MSM may be especially vulnerable to HIV/STIs.8,9 Transmen may face complicated power and gender dynamics in their sexual relationships with non-trans men.4 For some trans MSM, having sex with a non-trans gay male partner is a powerful validation of their gay/queer male identity, especially in the early years of transition, and may be more important than insisting on condom use. Some transmen who use testosterone have reported increased sex drive and increased interest in sex with non-trans men after beginning hormone use, which may contribute to their willingness to take sexual risks.4,10 Transmen on testosterone and/or who have had a hysterectomy may have frontal (vaginal) dryness, which increases their risk for frontal (vaginal) trauma during penetration, thus increasing their risk for STIs, including HIV.10 Low self-esteem may contribute to sexual risk-taking among transmen. Rates of depression, substance use, and suicide attempts are high in this population, but multiple barriers exist to accessing culturally competent support and treatment.3,11 Drug and alcohol use is a major risk factor for every community, regardless of their gender identity. Transmen may use alcohol or drugs to enhance sexual experiences or help to relieve anxiety about their bodies during sex.4 Some transmen may feel pressure to use drugs in order to fit into some gay men’s communities or subcultures. Although we have very little information about needle sharing for hormone or drug use among transmen, it may also be a risk factor for some.
What can help?
Online dating. Many transmen meet their non-trans male sexual partners on the Internet. Meeting partners through personal ads may allow transmen to describe their body and gender identity upfront (if they choose to do so) and discuss safer sex with potential partners before meeting in person.4 Educational materials for non-trans partners. Transmen’s non-trans male partners often do not have experience with transmen nor access to education about sex with transmen, which can lead to misconceptions about safer sex. For non-trans gay men, safe sex often simply means condom use with anal sex and they may not be aware of the risks associated with frontal (vaginal) sex. See the next section for information on available materials. Greater visibility in the gay community. Gay and bisexual men need to be educated about the presence of transmen in their community. Increasing visibility and knowledge about transmen may help create a welcoming environment, help increase inclusivity, and help transmen feel more powerful in their relationships with non-trans men.7
What’s being done?
tm4m (tm4m.org) is a San Francisco-based project for transmen who play with men (or want to). They provide information, education, and support to transmen who have sex with men through monthly educational workshops and discussion groups, informational materials and continuously working to foster acceptance and build community. tm4m is a collaborative effort co-sponsored by Eros, Trannywood Pictures and TRANS:THRIVE (a program of the API Wellness Center). The Gay/Bi/Queer Trans Men’s Working Group in Ontario has conducted a needs assessment with trans MSM, developed a sexual health resource12, and a website at www.queertransmen.org. They are also providing training and consultation about trans MSM inclusion for prevention workers serving gay men across the province. All Gender Health Online is a study exploring the sexual health of non-transgender men who have sex with transgender people. The results will be used to develop an online intervention to prevent the spread of HIV and promote the sexual health of transgender people and their partners. The STOP AIDS Project in San Francisco, CA strives to include transmen in their programming and community education. They include transgender men in their mission statement and have changed their data collection methods to better reflect varying bodies and gender identities in gay men’s communities.
What needs to be done?
We need to implement more inclusive data collection methods to better capture subgroups of transgender people. HIV prevention and care providers should not assume that all men they see were assigned ‘male’ at birth. You cannot tell if a guy is trans just by looking at him. The best method for data collection is a two-part question: 1) ask about current gender identity and 2) ask what sex was assigned at birth.13 If unsure, programs should ask transmen for their preferred name and pronoun and use those terms. If rates of HIV among transmen are indeed low, we now have the opportunity to engage in true prevention work to keep those numbers low. Gaining a better understanding of transmen’s risk behaviors and the different ways that they protect themselves will aid in providing appropriate and effective HIV prevention education to transmen and their sexual partners.
Says who?
1. It is important to note that few transmen have fully functional penises, primarily due to the relatively low rates of surgical success, high rates of complications, and the extremely high cost. 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. San Francisco, CA: University of California, San Francisco; 2009. www.transhealth.ucsf.edu
Special thanks to the following reviewers of this Fact Sheet: Walter Bockting, AJ King, Niko Kowell, Dan Lentine, Vel McKleroy, Sarah Morgan, Emily Newfield, David Schleifer, Hale Thompson, Erin Wilson. 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.” ©January 2010, University of CA. Comments and questions about this Fact Sheet may be e-mailed to [email protected].