HIV prevention and trans people: What the Trans PULSE Project can tell us

Prevention in Focus PiF 2014 Spring

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There is limited research available to help service providers understand transgender (or trans) people’s risks for HIV. This can make it difficult for service providers to know how to provide culturally safe, respectful and appropriate services to trans people. The Trans PULSE Project, based in Ontario, has begun to address this gap by studying the health and HIV vulnerability of trans people in Ontario.

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This article provides a brief introduction to terms and concepts that are important to understand in order to provide respectful and appropriate services to trans people. We also explore some of the key findings of the Trans PULSE Project and their implications for HIV prevention for trans people.

A brief introduction to trans identities

When many people think about gender, they think of two opposite categories (men and women) that never overlap or change. However, there are many people for whom this is not their experience of gender, and many of these people identify as trans. Trans people have existed throughout history.1 Unfortunately, the idea that gender is based in one’s biology, or that there are only two categories of gender are fixed ideas in many people’s minds. This is consistently reinforced through a lack of information about trans people and by policies that don’t consider trans people.2

The following is a list of general definitions about trans people. However, trans people are a diverse group and self-identifications may vary.

Trans people is an umbrella category for people who do not conform to society’s gender norms of masculine and feminine.3 Within this category, some of the common terms people may use to identify include trans woman, trans man, genderqueer, two-spirit, or other identities. The following list is a general guide:

  • Trans women are people who were assigned a male sex at birth but identify as a (trans) girl or woman.3
  • Trans men are people who were assigned a female sex at birth but identify as a (trans) boy or man.3
  • Genderqueer people are people whose gender identity doesn’t fit with the categories man or woman.

While many people identify as trans, some people who have transitioned to a new gender role identify themselves as men and women and do not necessarily use the term trans at all.

Aboriginal people may have different terms and understandings of gender than the ones listed above.4 For example, Two-spirit is an English translation of the anishinaabemowin words niizh manidoowag and refers to people who have both female and male spirits. It is used by some Aboriginal people who are gay, lesbian, bisexual, trans, or who have multiple gender identities.5 Other Aboriginal people may relate to other specific Aboriginal identities. A number of helpful resources about two-spirited people can be found on the 2-Spirited People of the 1st Nations website.

It’s important to note that these are terms commonly used in North America. People from other parts of the world may have other terms and understandings of gender.

How are gender identity and sexual orientation different?

Gender identity is your experience of yourself as a woman, man, or another gender. Gender identity is different than sexual orientation, which is how you think of yourself in terms of your sexual and romantic attractions.3 For example, a trans man who is attracted to men (trans or non-trans) will likely identify as a gay or bisexual man. A trans woman who is attracted to women (trans or non-trans) will likely identify as bisexual or lesbian. Similar to non-trans people, trans people have a variety of sexual orientations including gay, straight, lesbian, bisexual and more. Put another way, sexual orientation refers to who you go to bed with, while gender identity refers to who you go to bed as.

Transitioning: what it means

Some trans people choose to transition. This means that they make changes to their appearance or body (or both) to bring their expression of their gender in line with their felt gender. This may include socially transitioning, such as changing their name, clothing or hair style to be more masculine or feminine. It may include physically or medically transitioning by taking hormones, having surgeries or electrolysis to align their body with their identity.

Trans people make different choices about whether to transition or not. Some people may make all of these social and physical changes, some of them, or none of them. People’s ability to transition can be significantly impacted by whether they can afford a new wardrobe, the cost of a name change, hormones or surgeries. In some provinces and territories, surgeries are covered by the provincial or territorial health insurance and in others they are not.

Do we know how many trans people there are in Canada?

There is no data on how many trans people live in Canada, as trans people are not explicitly included in the census or Statistics Canada surveys.6 However, using estimates from U.S.-based studies, the percentage of the population who identify as trans is between 0.3% and 0.5%.7,8 Applying this to the population of Canada,9 there may be between 97,652 and 146,087 trans people over the age of 14 living in Canada.

Do we know how many trans people are living with HIV in Canada?

There is also no data on how many trans people are living with HIV in Canada. National HIV testing data do not include trans people as a distinct category. For this reason it is very difficult to create a picture of how HIV affects trans people in Canada.

What can HIV research about trans people from outside of Canada tell us?

One meta-analysis looked at the rates of HIV in trans women in studies from 15 countries. In five of these studies, trans women from urban areas in five high-income countries had an HIV prevalence rate of 21.6%.10 However, some of these studies recruited from specific sites, such as HIV prevention programs and HIV testing sites and from among some sub-groups (for example, people who engage in sex work), which may have over-inflated the HIV prevalence rate.  Actual national or international prevalence rates are not known. However, this prevalence rate does clearly indicate extremely high prevalence among some groups of trans women. Similar worldwide research on HIV rates among trans men are not available; however, results from five American studies estimated HIV rates for trans men to be between 0% and 3%.11

The Trans PULSE Project: one study about HIV and trans people in Ontario

The Trans PULSE Project is a research study about the health and HIV vulnerability of trans people in Ontario.12 It is a community-based research project led by trans people and non-trans allies. For one part of the research project, the Trans PULSE team conducted a survey of 433 trans people. The survey measured demographics, experiences of discrimination, sexual behaviour, sexual risk, HIV testing, self-reported HIV status and other health indicators, such as mental health.12

Recruitment for the Trans PULSE Project survey happened using a special technique, called respondent-driven sampling (RDS). RDS is a mathematical model that compensates when a sample of research participants can’t be selected randomly because a community is somewhat “hidden.” Recruitment begins with “seeds,” initial participants who complete a survey and then invite a limited number of others, who in turn complete a survey and invite others.12 RDS has been found to reach a wider cross-section of marginalized communities and the results are considered more generalizable than those gathered through other methods.13

What makes trans people vulnerable to HIV?

Many trans people experience discrimination because of their gender identity or expression. This type of discrimination is also called transphobia and may include verbal abuse and physical or sexual assault. Trans people may also experience barriers to employment, housing and medical care due to discrimination.2,14 Experiences of discrimination and barriers to the necessities of life – like income, housing and health care – can lead to mental health, relationship and body issues that can make trans people vulnerable to HIV.15 For example, a trans person who has experienced verbal or physical abuse for being trans may begin to believe they don’t have value, and this can impact their ability to negotiate safer sex practices.16

Let’s talk about sex

Trans people may use different words than non-trans people for their genitals. For example, some trans men do not use the word vagina and instead use “front hole” or “frontal sex.” Trans women may not use the word penis and instead use words like “girl dick,” “big clit” or “strapless.”17 These are only a few of the names trans people may use for their body parts. For the purposes of this article, the term “genitals” will be used to refer to the vagina or front hole and the term “strapless” will be used to refer to a penis.

Trans people may have sex partners of different genders, including non-trans women and men, trans women and men and genderqueer people. Sexually active trans women and trans men may also participate in a range of sexual behaviours including giving and receiving oral sex, receptive and insertive anal sex, and receptive and insertive genital sex. Sex involving penetration can also occur with flesh genitals, prostheses, or toys, fingers and hands.12

In order to determine the HIV risk of sexual behaviours, the Trans PULSE Project used the Canadian AIDS Society guidelines for assessing HIV risk.18 This allowed for the categorization of sexual activities into “no” risk, “low-to-moderate” risk and “high” risk.

A significant proportion of trans respondents had no HIV-related sexual risk in the past year. Twenty-five percent of trans men and 51% of trans women reported no sexual activity with a partner in the past year, resulting in no risk for the sexual transmission of HIV.12

A high proportion of trans people reported sexual activities in the past year that had a “low-to-moderate” risk of HIV transmission. These activities included oral sex and genital or anal sex with either no ejaculation or ejaculation while using a condom. Sixty-nine percent of trans men and 31% of trans women participated in sexual behaviours in the past year that carried a “low-to moderate” risk.12

A minority of trans people participated in sexual behaviours that carry a “high” risk for HIV transmission in the past year. These activities included oral sex and genital or anal sex with ejaculation without the use of a condom.  More trans women (19%) engaged in high-risk sexual activities than trans men (7%).12 The main high-risk sexual behaviour for trans women was insertive genital sex. The high-risk sexual behaviour that trans men were most likely to engage in was condomless receptive genital sex with a non-trans man. In the sub-group of gay, bisexual or men who have sex with men, one in 10 engaged in a sex activity considered “high risk.”11

Trans women and men have sex in many different ways, some of which put them at risk for HIV and some that don’t. According to the Trans PULSE team, it is critical in HIV prevention to not make any assumptions about the kinds of sex trans people are having.12

Needle use

Trans people may use needles to inject hormones or silicone as part of transitioning. Thirty-six percent of trans men and 6% of trans women injected hormones in the Trans PULSE study. In general, these participants were able to access new needles for injecting hormones.19

However, injection drug use was uncommon among participants, with 0.8% reporting injecting drugs in the past year.

How many people in the study had HIV?

The study estimated that 3% of trans women and 0.6% of trans men were HIV positive. While the prevalence of HIV in trans people in this study was 10-times the HIV prevalence for the general Ontario population (0.2%),20 there was not a statistically significant difference between the two rates. However, a large number of trans participants (46%) had never been tested for HIV. Therefore, these results may not reflect the true proportion of trans people living with HIV in Ontario.12

Interestingly, trans people of different ethnicities had different testing rates. Aboriginal participants (86%) were more likely to have ever had an HIV test than white participants (56%) and non-Aboriginal racialized participants (32%). However, these numbers apply to whether participants were tested at any point in time – even once – and do not tell us if there are differences in current need for testing.

Barriers to HIV testing identified by study participants included separate testing services for men and women at clinics (which could mean a trans person having to attend a clinic where they feel uncomfortable, unwelcome, or where trans-inclusive counselling was not available) and being afraid that service providers would discriminate against them for being a trans person.15

HIV prevention with trans people

Much of current HIV prevention messaging does not take into account the reality of trans bodies and sexual experiences. For example, prevention messages don’t take into account the fact that a (trans) woman could be the insertive partner in anal or genital sex or the fact that a (trans) man could be the receptive partner in genital sex.15,21

The unique biology of trans people’s bodies may put them at further risk of HIV in some situations. A trans man who is on testosterone and has condomless receptive genital sex with a partner with a penis or strapless may be at greater risk for getting HIV and other STIs because the front hole may have dryness due to testosterone use.21 There also isn’t enough research about trans women who have had surgery to create a vagina. We don’t know if the risk of contracting HIV is different than for people born with a vagina.15

Having sex and being found desirable can be validating for a trans person’s gender or sexual orientation. For example, a straight trans women who is having sex with a non-trans man may find it validates her identity as a woman. The same may be true for a gay trans man who is having sex with a non-trans man. Some smaller research studies have found that in sexual situations a person’s desire to be accepted sometimes overpowers their ability to feel comfortable negotiating the type of sex they are having. This may result in engaging in sexual activities considered higher risk for HIV transmission.15,21

Improving HIV prevention among trans people: what can you do?

One of the first and biggest steps is to ensure you and your organization are providing respectful services to trans people. Some key tips to providing respectful services include:

  • Always refer to a trans person by their chosen name regardless of whether they have had a legal name change. Changing your name is expensive and not everyone can afford to do it.
  • Refer to a trans person by their preferred pronouns (she/he/they, etc.). If you are unsure, ask politely in private. For example, “what pronouns do you prefer to go by?”
  • Examine programs for barriers to access for trans people, for example:
    • Are programs gender neutral? If not, are trans people supported and encouraged to access programs for men or women according to their chosen gender? Is there a clear way for genderqueer individuals to participate?
    • Do staff feel able to challenge transphobia from other clients or staff?
    • Do agency forms allow space for trans people to self-identify?
    • Are staff trained to interact with clients in such a way that they maintain confidentiality about someone’s trans identity?
    • Do staff recognize that a person’s gender history is personal health information that is protected?
    • Are gender-neutral washrooms available at your organization? If not, are trans people supported to access the washroom of their choice?
    • Are trans-specific resources and information visibly displayed?
    • Do organizational non-discrimination policies include gender expression and gender identity?

We know that trans people don’t have high HIV testing rates. We need to take steps to improve testing! Some of these steps can include:

  • Create trans-positive HIV testing campaigns by making sure HIV prevention messaging includes the reality of trans people’s bodies and sexual activities;
  • Include trans community members in the creation of HIV testing campaigns to make sure the messages resonate with local trans people;
  • Provide trans-positive HIV testing and follow-up services;
  • Stock trans-positive sexual health resources such as Brazen and Primed, which can be ordered for free from CATIE;
  • Organize training for staff about how to provide trans-positive HIV testing;
  • Post trans-positive posters on the wall at your organization.

Unfortunately, we don’t know how many trans people have HIV and if they are getting the HIV services they need. Ways to improve this can include:

  • Advocate for research about HIV to include trans participants;
  • Provide/create trans-positive HIV prevention services and resources with and for trans people;
  • Provide/create trans-positive HIV treatment, care and support services and resources with and for trans people;
  • Organize training for staff about how to provide trans-positive care and support services.

The Trans PULSE Project is a source of new knowledge that can help to inform HIV prevention services that meet the needs of trans people. It offers an opportunity for service providers to increase their understanding of the sexual health needs of trans people and to build on or develop trans-positive HIV testing and counselling services.

Resources

BRAZEN: Trans women’s safer sex guide

Primed2: A Sex Guide for Trans Men Into Men

Asking the right questions 2: Talking with clients about sexual orientation and gender identity in mental health, counselling and addiction settings

About purportedly gendered body parts

 

References

  1. Feinberg L. Transgender warriors: Making History from Joan of Arc to Dennis Rodman. Boston: Beacon Press; 1997
  2. a. b. Bauer GR, Hammond R, Travers R, et al. “I don’t think this is theoretical; this is our lives”: how erasure impacts health care for transgender people. Journal of the Association of Nurses in AIDS Care. 2009 Sep-Oct;20(5):348-61.
  3. a. b. c. d. Barbara M. Asking the right questions, 2: talking about sexual orientation and gender identity in mental health, counselling, and addiction settings. 2007. Available at: http://knowledgex.camh.net/amhspecialists/Screening_Assessment/assessment/ARQ2/Documents/arq2.pdf
  4. Brotman S, Ryan B, Jalbert Y, Rowe, B. Reclaiming space-regaining Health: The health care experiences of Two-Spirit people in Canada. Journal of Gay and Lesbian Social Services. 2002 14:1 67–87.
  5. Rainbow Resource Centre. Two-Spirit People of the First Nations. 2008. Available from: http://www.rainbowresourcecentre.org/wp-content/uploads/2011/09/TwoSpirit.pdf.
  6. Rainbow Health Ontario, Bauer G. LGBT research with secondary data. 2012. Accessed on Oct 10, 2013 at: http://www.rainbowhealthontario.ca/admin/contentEngine/contentDocuments/LGBT_Research_with_Secondary_Data.pdf.
  7. Conron KJ, Scott G, Stowell GS, Landers SJ. Transgender health in Massachusetts: results from a household probability sample of adults. American Journal of Public Health. 2012 Jan;102(1):118-22
  8. Gates GJ. How many people are lesbian, gay, bisexual and transgender. The Williams Institute, UCLA School of Law. 2011. Available at: http://williamsinstitute.law.ucla.edu/wp-content/uploads/Gates-How-Many-People-LGBT-Apr-2011.pdf
  9. Statistics Canada. Population by sex and age group, by province and territory. 2013. Available at: http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/demo31a-eng.htm
  10. Baral SD, Poteat T, Strömdahl S, et al. Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. The Lancet Infectious Diseases. 2013 13(3): 214 – 222.
  11. a. b. Bauer GR, Redman N, Bradley K, Scheim AI. Sexual Health of Trans Men Who Are Gay, Bisexual, or Who Have Sex with Men: Results from Ontario, Canada. International Journal of Transgenderism. 2013 14(2): 66-74.
  12. a. b. c. d. e. f. g. h. i. Bauer GR, Travers R, Scanlon K, Coleman T. High heterogeneity of HIV-related sexual risk among transgender people in Ontario, Canada: a province-wide respondent-driven sampling survey. BMC Public Health. 2012 12(1):292.
  13. Ramirez-Valles J, Heckathorn D, V´azquez R, et al. From networks to populations: The development and application of respondent-driven sampling among IDUs and Latino gay men. AIDS and Behavior. 2005 9(4): 387–402.
  14. Longman Marcellin RM, Scheim AI, Bauer G, Redman N. Experiences of Transphobia among Trans Ontarians. Trans PULSE e-Bulletin. 2013 March 7;3(2). Available at: http://transpulseproject.ca/wp-content/uploads/2013/03/Transphobia-E-Bulletin-6-vFinal-English.pdf
  15. a. b. c. d. e. Bauer G. It’s all in the context: structural and psychosocial challenges to HIV prevention with transgender women. Women and HIV Prevention in Canada Toronto, ON: Canadian Scholar’s Press; 2013.
  16. Kosenko K. Contextual influences on sexual risk-taking in the transgender community Journal of Sex Research. 2010 48(2-3):285–296.
  17. Page M. Brazen: Trans women’s Safer Sex Guide. The 519 Community Centre. 2013.
  18. Canadian AIDS Society. HIV Transmission: guidelines for assessing HIV risk. 2004. Available at: library.catie.ca/PDF/P25/22303.pdf
  19. Bauer G, Redman N, Hammond R, et al. HIV-related Risk and HIV Testing in Trans People in Ontario, Canada: Trans PULSE Project. World Professional Association of Transgender Health 2011 Atlanta, Georgia (oral presentation).
  20. Public Health Agency of Canada. Summary: Estimates of HIV prevalence and incidence in Canada, 2011. Available at: http://www.catie.ca/sites/default/files/Estimates-of-HIV-Prevalence-and-Incidence-in-Canada-2011.pdf.
  21. a. b. c. What are transgender men’s HIV prevention needs? Prepared by Jae Sevelius, CAPS; Ayden Scheim and Broden Giambrone, Gay/Bi/Queer Tran’s Men’s Working Group, Ontario Gay Men’s Sexual Health Alliance.

 

About the author(s)

Scott Anderson is CATIE's hepatitis C researcher/writer. Prior to working at CATIE, Scott was a research coordinator at the Centre for Addiction and Mental Health, where he led studies examining healthcare access for marginalized groups.