You may be wondering why HIV prevention should be any more of a priority for transgender women (trans women) than for any other group. The reason lies in the numbers: the proportion of trans women living with HIV is estimated to be an astounding 49 times higher than in the general population. Worldwide, the prevalence of HIV among trans women is about 19 percent; this means that 19 out of 100 trans women in a given population are living with HIV [Baral et al, Worldwide burden of HIV in transgender women: a systematic review and meta-analysis, Lancet Infect Dis. 2013 Mar;13(3):214-22]. By comparison, fewer than 5 in 100 adults are living with HIV in sub-saharan Africa, where the HIV pandemic is considered severe. In 2010, the US Centers for Disease Control and Prevention (CDC) reported that the largest percentage of new HIV diagnoses in America occurred among transgender people.
The interesting thing about these numbers is that they describe HIV among trans women broadly, or measured as an entire group; they do not describe one particular individual's risk of HIV. While it is true that trans women as a whole are at a greater risk for getting HIV than their cisgender (non-transgender) counterparts, it is important to recognize that there is nothing innate about being a trans woman that puts her at risk for HIV -- the virus does not discriminate. But people do, and societies do. And understanding how stigma and discrimination against trans women affect them goes a long way toward explaining why trans women are so much more likely to get and live with HIV.
Although some trans women are not at risk for HIV, many are -- and many do not know it. If you are a transgender woman who is HIV-negative (or know someone who is), one of the best ways to stay that way is to understand what can put you at risk for getting HIV and what you can do to mitigate that risk. This will enable you to make informed choices in your life -- choices that prioritize your health and well-being, including those that will help to prevent the spread of HIV.
One of The Well Project's Community Advisory Board members and A Girl Like Me bloggers had this to say to HIV-negative trans women:
As a black transgender woman living with HIV in the wake of an upcoming Trump administration, I implore all of my transgender sisters who are negative to be even more proactive in their sexual and transitional health. ... Please use clean needles each time you are injecting your estrogen. If at all possible to use a condom during anal, vaginal, and/or oral intercourse, please do. ... Having HIV is not a safety net for transgender women no matter which benefits you see your positive sisters are reaping. The times ahead are already challenging, so keep yourself healthy. No excuses!
-- Tiommi J. Luckett
Starting With Self-Worth
One of the greatest prevention tools you can develop is a good, solid sense of your own worth. Having good self-worth or positive self-esteem means being in touch with your innate value as a human being. This value does not depend on your gender, sexual orientation, race, age, education, or what you do for a living. It cannot be taken from you and is not based on any comparison to others.
People with high self-esteem tend to show good judgment, take responsibility for their thoughts and actions, maintain close relationships, try new things, and respect and feel good about themselves. By contrast, people with low self-esteem tend to seek approval from others, let others take advantage of them, have a hard time saying "no," and make poor decisions.
This is especially important in light of the enormous stigma, discrimination, violence, and trauma that millions of gender non-conforming people worldwide endure. The ultimate purpose of stigma and discrimination is to discredit or shame people -- to make them believe they are "less than" (which is never the case). Being able to see yourself positively will empower you to act in ways that are good for your health and well-being because your decisions will be anchored in your value. Respecting yourself from the inside out can help to shield you from some of life's uglier people and moments. If someone says or does something stigmatizing, you may experience it as hurtful, but you do not have to take their beliefs about you on as your own. You can remain rooted in the truth of your own worth.
One good step to build self-worth is to stop saying negative things to and about yourself (e.g., calling yourself "worthless," telling yourself there's something wrong with you). In addition to cleaning house from the inside-out, or clearing away negative self-talk, one of the best things you can do to recognize and strengthen your self-worth is to connect with others and get support. In a recent survey conducted by The Well Project, almost three out of four participants said that engaging with The Well Project's online resources helped them feel less isolated. In addition, half said it decreased self-stigma and increased their self-esteem. You can visit our award-winning online blog, A Girl Like Me where many amazing women living with HIV share their stories.
Risk Factors and Prevention Priorities
There are several risk factors that can lead transgender women to be vulnerable to HIV. It can be helpful to understand what these factors are so that you know which preventive actions are the most important for you to take.
**Risk: Stigma and discrimination **
Probably the biggest factors, stigma and discrimination affect trans women's lives in a multitude of ways. They can negatively affect how trans women feel about themselves inwardly as well as trans women's opportunities in the world at large -- housing, employment, health care, etc. Studies have shown that stigma and discrimination -- or the fear of them -- keep people from getting tested for HIV and engaging in HIV prevention.
- Good self-esteem and a solid sense of one's worth as a human being, which does not depend on what others think or do
- Connecting to others who love and support you; they can help you to see and live from your value
Risk: Unemployment, poverty, homelessness
Due to discrimination and limited employment opportunities, many trans women are forced to turn to sex work to support themselves. Sex workers are often not as able to negotiate for condom use or other safer sex options. Even when a trans woman does not engage in sex work, if she is focused on basic survival -- where her next meal is coming from or where she will find shelter for the night -- it's likely much more challenging to make safer sex a top priority.
- Secure housing and employment: there are a number organizations that can help you find housing and employment or know organizations that can; see our list of Resources for Trans Women to get started.
- Engage in safer sex whenever possible.
- Consider taking PrEP, or Pre-Exposure Prophylaxis. PrEP is for people who test HIV-negative; it involves taking a daily pill by mouth that contains HIV medicines (Truvada, or tenofovir disoproxil fumarate plus emtricitabine). The idea is to have some HIV drugs in the bloodstream so that, if you are exposed to HIV, you are much less likely to get it. PrEP is a relatively new and promising tool that HIV-negative people can use without their partners' cooperation or knowledge. Researchers have shown that, when taken as directed, PrEP is effective in preventing HIV. For more information, see our fact sheet on Women and PrEP.
So far, no clinically significant drug interactions have been seen between the tenofovir or emtricitabine in Truvada and feminizing hormones. The good news for trans women is that PrEP has been shown to have good effect in rectal tissue in cisgender men. It is possible, however, that feminizing hormones could reduce blood levels of Truvada. This could mean that trans women taking estrogen and PrEP could have lower levels of PrEP medicines in their rectal tissue and may therefore need higher doses than cisgender men. This question requires further study.
Risk: Substance use or abuse
Substance use by trans women or by their sexual partners can increase HIV risk. When people are under the influence of drugs or alcohol, they are more likely to make poor decisions and have unsafe sex. People who use drugs are also more likely to exchange sex, including unprotected sex, for drugs or money to buy drugs. To find out more, see our fact sheet on Substance Abuse and Addiction.
- Prepare for sexual activity before you have a drink or begin using; this means getting supplies (condoms, lube) as well as thinking through what you are/are not willing to do ahead of time.
- Talk things through with your sexual partner before the party begins; if you need help, see our fact sheet on Talking with Your Partner About Condoms.
- See our fact sheet on Substance Abuse and Addiction to see if you have a problem with alcohol or drug use, or to find the support and treatment you deserve if you struggle with substance abuse.
- If you are an injection drug user, see our fact sheet on Cleaning Equipment for Injecting Drugs
Risk: Injecting hormones/silicone
Transgender women who inject feminizing substances such as hormones or silicone are at risk for HIV if they share needles or other injection equipment. It is important to have clean, sterile needles each time you inject.
**Prevention priority: **
- If you cannot buy new needles and syringes from a pharmacy or drug store, look for a needle exchange program (also called a syringe exchange program). Needle exchange programs can give new syringes and needles to people who inject drugs without a prescription in order to prevent the spread of HIV and other blood-borne diseases.
- If you cannot get new injection equipment, it is possible to clean equipment so as to reduce the risk of getting HIV; see our fact sheet on Cleaning Equipment for Injecting Drugs.
Risk: Sexual/biological factors
There are several biological factors that contribute to an increased risk of HIV for trans women; they are, however, deeply connected to the social realities mentioned above. As in the general population, trans women are most likely to get HIV through sexual contact. Many trans women engage in receptive anal-penile intercourse, which is a high-risk activity when engaged in without protection. However, we do not fully understand the risk of receptive anal sex in trans women who take feminizing hormones since we do not yet have a clear picture of how they affect the skin lining the anus and rectum.
Similarly, though researchers have shown that receptive vaginal-penile sex is a high-risk form sexual contact for cis-gender women, we do not know what the risk of HIV transmission is for trans women with neovaginas. It is important to know that most neovaginas cannot lubricate naturally; therefore, using lube during sex is recommended to decrease the chances of causing small tears through which HIV can enter the body. For more information on the use of lube and barriers (condoms, gloves, etc.), see our fact sheet on Safer Sex.
While it may seem that transgender women can simply practice the same safer sex techniques as everyone else and therefore remain HIV-negative, the picture is a bit more complicated. Many trans women find themselves at greater risk for HIV due to their sexual networks, or the communities of people in which they find potential sexual partners. If a trans woman's community includes others who are themselves at higher risk for HIV (e.g., due to higher risk sexual activities, substance use, lack of access to HIV testing and prevention), that increases her risk for HIV.
In addition, because trans women often believe that there are few people who would enter into a committed relationship with them, some feel they have to 'settle,' cannot safely ask about a partner's HIV status, or are unable to negotiate for safer sex.
- Good self-esteem and a solid sense of one's worth as a human being. Those with positive self-worth are more likely to advocate for their sexual health and avoid bad relationships. They are also less likely to seek their value in others' willingness to be sexual with them.
- Engage in safer sex techniques whenever possible.
- Consider taking PrEP (see more above).
Though there will be those who may not see your beauty and inherent goodness and may believe instead that you are "other" or "less than," that does not make you any less worthy of respect, love, or affection. It is said that we are shaped by our thoughts. While the stigma around being transgender may pose a threat to your self-esteem, it is important to believe in yourself and surround yourself with others who do as well.
The best protection you have is your belief in your own value; understanding that you are a worthy and good person is the foundation for all the decisions and actions that contribute to your health.
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[Note from TheBody.com: This article was created by The Well Project, who last updated it on Feb. 16, 2017. We have cross-posted it with their permission.]