“Some of us, we don’t know where we’re going to be tomorrow.” Contextual factors affecting PrEP use and adherence among a diverse sample of transgender women in San Francisco

Abstract

Transgender women (TW) are disproportionately affected by HIV. Antiretroviral pre-exposure prophylaxis (PrEP) can reduce TW’s vulnerability to HIV, but PrEP uptake has been limited among TW. To explore barriers to PrEP uptake, the study team conducted two semi-structured focus groups with TW in San Francisco at risk for HIV acquisition. A within-case, across-case approach was used to code and analyze emerging themes. Focus group participants were racially and ethnically diverse. A few participants in both groups had heard of PrEP, but some had not. Several said that their health care providers had not told them about PrEP. Participants in both groups had questions about side effects. They expressed medical mistrust and said poverty is an important context for their lives. They described a need for gender affirming health care services and raised concerns about interactions of PrEP with feminizing hormones. Information about side effects and interactions between gender affirming hormones and PrEP need to be explicitly addressed in PrEP education campaigns focusing on TW. Health care institutions and health departments should train clinical staff how to provide affirming care. Gender identity nondiscrimination laws and policies could improve transgender people’s ability to earn a living and access health care.

Introduction

Transgender women (TW) in the U.S. are 34 times more likely to be living with HIV than the general population (Baral et al., 2013), with 21.6% living with HIV (amfAR, 2014). Rates of HIV infection are even higher for racial and ethnic minority TW (CDC, 2015). HIV prevalence is as high as 50% for Latina TW and 48% for Black TW, compared to 4% among White non-Hispanic TW in the U.S. (Nuttbrock et al., 2009). Despite this increased risk, TW are an underserved population for both HIV treatment and prevention (amfAR, 2014).

Pre-exposure prophylaxis for HIV prevention (PrEP) is effective in reducing HIV acquisition among men who have sex with men (MSM) (Grant et al., 2010), heterosexuals (Baeten et al., 2012), and people who inject drugs (Choopanya et al., 2013). A limited number of TW have been included in some of the initial clinical trials of PrEP. A subanalysis of transgender participants in the iPrEx study and in the iPrEx Open Label Extension (OLE) study found zero effectiveness among this group on an intention to treat basis (Deutsch et al., 2015), with low uptake and adherence a hypothesized factor contributing to this, although questions about the interactions of exogenous hormones and tenofovir entry into tissues remain. However, the analysis of the transgender subgroups of two PrEP clinical research trials demonstrated some efficacy among the minority of TW who were adherent to daily PrEP (Ibid).

We conducted a qualitative study to examine the barriers to PrEP uptake in a racially and ethnically diverse sample of TW to inform the development of culturally-tailored interventions to increase PrEP uptake in TW in San Francisco at risk of acquiring HIV.

Methods

Researchers affiliated with a Boston community health center and at a university research and educational institution in San Francisco collaborated to conduct two (2) focus groups with diverse TW at risk of HIV acquisition in San Francisco. One focus group was conducted in English (n = 11), and another in Spanish (n = 8). Affiliated study staff at both locations, including TW staff, used convenience sampling to recruit potential participants. Qualifying participants had to self-report: (1) identifying as a transgender woman, (2) having sex with men, (3) being HIV-negative; and (4) having engaged in at least one episode of condomless insertive or receptive anal intercourse in the past three months. All participants completed a self-report telephone screener to confirm study qualification. Participants were asked if they had ever used PrEP. The Institutional Review Board at the lead agency in Boston reviewed and approved all study materials and procedures.

Team members developed a semi-structured interview guide (Table 1) that was translated into Spanish, then translated back into English to ensure that the original meaning was not altered. Qualified participants completed an informed consent in English or Spanish. Focus groups were audio recorded and lasted 90 min. Each participant received a $50 gift card. Audio files were transcribed verbatim and checked for errors. The Spanish audio file was transcribed verbatim, then translated into English. Two study members took written field notes, to document a rich contextual description (Phillippi & Lauderdale, 2018).

Table 1.

Focus group interview guide.

Topic	Question
1. Introduction	Prior to being asked to join this focus group, what have you heard about new approaches to HIV prevention?
2. Perceptions of PrEP efficacy	How effective do you think taking a pill is for preventing HIV infection? Have you ever heard of PrEP – pre-exposure prophylaxis for HIV prevention?
3. Communication about PrEP with medical providers	How have your medical providers talked to you about PrEP?
	If you have a regular medical provider, does that doctor or other health care personnel talk about PrEP and sexual behavior?
4. Barriers, facilitators to taking PrEP	What are some of the things that (might) get in the way of taking PrEP pills as prescribed?
5. Cost of PrEP and sexual health counseling	How would you pay for PrEP medication and counseling? How might the cost of PrEP be a barrier to your ability to use PrEP?
6. PrEP and sexual decision making	How did/would taking PrEP affect the decisions you make regarding sex?
7. Feasibility and acceptability of PrEP to MSM, transgender women	How willing do you think transgender women at high risk of HIV infection would be to engage in counseling around PrEP adherence and sexual risk?
8. Frequency of PrEP use	What do you think about the option of taking PrEP either on a daily basis or intermittently (e.g., on selected days of the week)?
	If you were to take PrEP intermittently (e.g., on selected days of the week or right before/after sex), what would be the easiest way for you to do that?
9. Feasibility and efficacy of PrEP using rectal microbicides gel or injectable PrEP	How effective do you think about using a rectal gel (a microbicide) in preventing HIV infection – how effective do you think this would be?
	What about having a PrEP injection (as a shot) to prevent HIV infection - how effective do you think this would be?
	Would you prefer taking a pill, a topical gel or an injection? Why?
	How do you think taking a pill to prevent HIV infection would compare to using a rectal gel both in terms of working to prevent you from getting HIV and ease of use?
10. Other questions	What additional concerns do you have regarding PrEP use? Would you be willing to use PrEP to reduce your risk of HIV infection? Why or why not? Are you out about being transgender and having sex with men to your provider?

The study team used a qualitative descriptive approach (Sandelowski, 2010; Sullivan-Bolyai, Boya, & Harper, 2005) to code and analyze the data. First, three team members read each transcript independently to record major insights and reflections on the data. After creating a codebook, they used a within-case and across-case approach (Ayres, Kavanaugh, & Knafl, 2003) to code transcripts and analyze emerging themes within each focus group and across focus groups. Field notes were used to improve the depth of findings and analysis (Phillippi & Lauderdale, 2018). Codes and potential themes were reviewed by the three coders, and emerging themes and significant statements agreed upon by the all study team members.

Results

The English language focus group participants were racially diverse (Table 2): four participants were White, three were American Indian/Alaska Native, two were Black, and two identified as multiracial. The mean age was 41, with a range from 23 to 56. Most of the Spanish language focus group participants (seven out of eight) identified as Hispanic or Latina, while one said her ethnicity was White. The mean age was 42, with a range from 27 to 64. Three of the English focus group participants were unemployed and three on disability, compared to five of the Spanish group participants who were unemployed and none on disability. A majority of the participants in both focus groups (6/11, 5/8) reported earning income of less than $12,000 per year. The English language participants reported a higher education level than the Spanish language participants. Overwhelming majorities in both focus groups had a primary care provider (PCP) and health insurance. A majority in both groups reported binge drinking at least once a month, while a small percentage in both groups reported amphetamine use.

Table 2.

Descriptive characteristics of PrEP focus groups participants (n = 19).

Characteristics	English focus group (n = 11)	Spanish focus group (n = 8)
	Mean (SD)	Mean (SD)
Age in years*	41.1 (10.6)	42.4 (11.4)
Number of male sex partners (past 3 months)	7.8 (14.3)	11.3 (11.5)
CAS (# incidents past 3 months)	7.72 (14.27)	2.1 (2.4)
CAS with known HIV-infected partner (past 3 months)	0.6 (1.2)	0
CAS with unknown HIV status partner (past 3 months)	5.7 (14.8)	1.4 (2.3)
Characteristics	n (%)	n (%)
Gender
Transgender (male to female)	11 (100)	7 (87.5)
Refused to answer	0	1 (12.5)
Sexual orientation
Heterosexual or straight	4 (36.4)	6 (75)
Homosexual or gay/lesbian	2 (18.2)	0
Bisexual	4 (36.4)	2 (25)
Other	1 (9.1)	0
Race/Ethnicity**
Amer. Indian/Alaska Native	3 (27.3)	0
Black or African American	2 (18.2)	0
Non-Latino White	4 (36.4)	0
Asian	0	0
Hispanic/Latino	0	8 (100%)
Other	2 (18.2)	0
Employment
Full-time	2 (18.2)	1 (12.5)
Part-time	1 (9.1)	2 (25)
Unemployed	3 (27.3)	5 (62.5)
Disabled	3 (27.3)	0
Retired	1 (9.1)	0
Full-time student	1 (9.1)	0
Annual income (before taxes)
Less than $6000	4 (36.4)	3 (37.5)
$6000 to $11,999	4 (36.4)	2 (25)
$12,000 to $17,999	2 (18.2)	1 (12.5)
$18,000 to $23,999	0	0
$24,000 to $29,999	0	2 (25)
No response	1 (9.1)	0
Education
Less than high school	1 (9.1)	1 (12.5)
High school or GED	1 (9.1)	5 (62.5)
Some college	6 (54.5)	1 (12.5)
College degree	2 (18.2)	0
Some graduate work	0	0
Graduate/professional degree	1 (9.1)	0
No response	0	1 (12.5)
Health insurance
Yes	11 (100)	7 (87.5)
No	0	1 (12.5)
Has primary care provider
Yes	10 (90.9)	7 (87.5)
No	1 (9.1)	1 (12.5)
Substance use during or up to 2 h before sex in the past 3 months Alcohol (5+ drinks on any one occasion)
Didn’t use	4 (36.4)	3 (37.5)
Once a month or less	2 (18.2)	2 (25)
About once a week	4 (36.4)	1 (12.5)
Several times a week	1 (9.1)	1 (12.5)
No response	0	1 (12.5)
Amphetamine Didn’t use	8 (72.7)	5 (62.5)
Once a month or less	2 (18.2)	0
About once a week	0	1 (12.5)
No response	1 (9.1)	2 (25)
Cocaine
Didn’t use	10 (90.9)	6 (75)
No response	1 (9.1)	2 (25)
Amyl nitrate (poppers)
Didn’t use	10 (90.9)	6 (75)
No response	1 (9.1)	2 (25)

^*One English language focus group participant did not respond to this question.

^**Participants could choose more than one option; percentages may not add up to 100%.

Common and unique emerging themes

Nine common themes emerged in both the English and Spanish focus groups, and one theme each emerged only in one of the two focus groups.

Some participant knowledge of PrEP, and some misinformation

Some participants in both focus groups demonstrated some knowledge of oral PrEP and its potential to prevent HIV transmission, but some participants in both focus groups had not heard of PrEP (Table 3, Significant Statements 1–2, 4–6). One participant mistakenly thought that PrEP was a vaccine (Statement 3).

Table 3.

Major themes from San Francisco focus groups.

Emerging theme		Significant statement	Age, race/ethnicity
Some participant knowledge of PrEP, and some mis-information	1.	“I know it’s a pill, and I know you take it, so if you’re exposed, PrEP is so if you’re exposed to HIV. And you won’t get it, right? With the pill, right?”	34, Black transgender woman
	2.	“I’ve never heard about [PrEP] prior to today.”	35, White
	3.	“I’ve heard about a vaccine that they were talking about, and perhaps [PrEP] is what it was?”	49, White
	4.	“PrEP is a pill that you take daily that…decreases your risk, or something.”	23, Multiracial
	5.	“Both (PrEP and condoms). Yes, yes, yes, both of them…I’m also interested in the injection every 6 months.”	37, Latina
	6.	“Well, for my partner, openly I would just tell him, this pill is for prevention. I would be delighted to tell him…It’s for prevention. So, why should you feel embarassed? Look, I’m not ashamed.”	41, Latina
Limited provider education of patients about PrEP	7.	“My care provider hasn’t talked to me about PrEP, but they have about PEP, post-exposure, because I was afraid that I might have been exposed to HIV.”	34, Black
	8.	“My doctor … he’s never brought any of this up. I’ve heard about stuff like this from my gay friends, OK? From the outside world.”	49, White
	9.	“I think that we are silent because the doctors haven’t really talked to us about this. We don’t have many answers and very few questions.”	38, Latina
Concerns about possible side effects	10.	“…What are the possible side effects of this pill from taking it? Does it cause liver disease?…high blood pressure?…stroke? I heard…that it can cause headaches, nausea, diarrhea, potential strokes. I’ve heard this. So I’m concerned. I mean, because I wouldn’t want to consume anything in my body that’s going to harm me.”	56, Black
	11.	“I’m going to take this pill, and then in 2017 [three years later], I might be dead, because the pill became toxic to me, because a lot of these HIV medications are toxic.”	48, American Indian/Alaska Native
	12.	“Better to use the condom because as they’ve said there are side effects, and as she said, you run the risk of being infected with other things.”	38, Latina
	13.	“I think that someone ought to be thinking that all pills have side effects. I would like to know what side effects this has because, ok, I’m glad to relieve myself of one thing but if it’s going to give me something else…”	27, Latina
Issues related to hormones	14.	“I can guarantee all of the girls here are on injection, I’m sure somebody here – almost all of us here are swallowing spiro everyday…so yeah, we’d be willing to swallow a pill everyday if it helped, I’m sure.”	49, White
	15.	“If you educate a group of people about a particular thing…and empower that group of people about a particular thing, their life will begin to change.”	48, American Indian/Alaska Native
	16.	“Because he is a doctor and comes to institutions. They can explain the side effects, explain the secondary effects. How it is going to work. How your hormone regimen works with the regimen of other medications. What happens if they miss. Basically, what is good and what is bad.”	38, Latina
	17.	“So, they tested me and when my results came back, it turned out that my hormone levels were too high …So I think that I know the difference between buying them on the street, you don’t know what dosage you should use to inject yourself. Or, like in my case, where I was injecting, I suppose, more than what I was buying on the street because there on the tests the doctors noticed that the level was too high.”	27, Latina
	18.	“A lot of girls are injecting themselves with what they buy on the street without knowing how much to take in order to feel like a ‘practical’ woman…and that is dangerous.”	Unknown Spanish group participant
Concerns about adherence under the influence of substances	19.	“I stay off crack for three days and I’m taking the pill…now, a john comes along. He got some money and some crack. So now, I’m high out of my mind for three days, four days, I’ve been off the pill for three days …When you stop taking it, and then you take it again, and then you stop, and then you take it again, and then you stop…It ends up not working at all.”	48, American Indian/Alaska Native
	20.	[“What do you think interrupts taking those pills?”] “Taking them drunk.”	Unknown Spanish group participant
	21.	“I like to drink. So I drink hormones, alcohol, and these pills.”	38, Latina
The importance of poverty as social context for transgender women	22.	“Almost all of us are at the poverty level wherever we’re at, because society’s continued thoughts about us, and perceptions of us…having somebody out there, and offering an ability to help us get away from AIDS actually gives people some empowerment.”	49, White
	23.	“There are some people that aren’t even stable enough in their lives to know what’s going on…Some of us, we don’t know where we’re going to be tomorrow, don’t know what we’re going to be doing…going to school, or working, some people—some of us may not even have a stable place to live, or let alone taking PrEP.”	No age given, White
	24.	“If MediCal [California Medicaid] won’t pay for it then probably most of us would say, ‘Sorry can’t afford it, ain’t going to do it.’”	Unknown English group participant
	25.	“If your insurance doesn’t cover it [PrEP], you’re fucked.”	38, Latina
	26.	“My resources are very limited, so I mean, I couldn’t afford to pay $9,000 a year. I’ll use the condom.”	38, Latina (not the same individual as above)
Distrust of the government and/or medical establishment	27.	“I’m supposed to be consuming something that’s supposed to help me, but instead, it’s harming me, so instead of it really helping me, I’m the guinea pig to see how it’s going to work within me.”	56, Black
	28.	“You will still take the risk, you will still choose to live however you going to live, and believe the government that’s making these pills that, for all I know, could’ve literally went up in a lab, put some shit together, and invented AIDS in the first place.”	48, American Indian/Alaska Native
	29.	“I would be like a guinea pig. We don’t want another Tuskeegee, baby. No we don’t.”	38, Latina
The belief that PrEP is for gay men (and not transgender women)	30.	“To me, this PrEP thing is a gay white man’s thing, OK? It’s for people that have stability, and maybe have money.”	34, Black
	31.	“Now they are giving the ‘gay boys’ a lot of anti-HIV mercy, even if they don’t have HIV, just to prevent contact.”	37, Latina
The need for gender-affirming health care	32.	“My doctor…although he works with transgenders, he never once brought any of this up. I’ve heard about stuff like this from my gay friends, OK?”	49, White
	33.	“My poor provider don’t know how to handle me, honey. I mean…my poor doctor, I think I break his brain every time I see that man…How does a man who specializes in helping transwomen not know” about pansexuality (attraction to all genders) and sadomasochism?	29, Multiracial
	34.	“I’ve had three different doctors at one facility [in four years]. So now, I really don’t like to talk, because for one, it leaves me feeling vulnerable …They don’t really know us. They don’t know who we are, what we need.”	48, American Indian/Alaska Native
	35.	“ it is good to have a relationship with your doctor because she is your doctor. You have to have a relationship with your doctor. And explain to her what your risks are so that she knows and is able to help you. And with no shame.”	38, Latina
	36.	“I think that when they did the intake, they took down information on my gender and sexual stuff. But not after that, no more.”	64, Latina
Thoughts on various modalities of PrEP	37.	“…if a pill can stop somebody from becoming sick, hey, I’m all [for it].”	34, Black
	38.	“…if I were more active, I would use it [a PrEP pill]. Without fear, I would use it.”	Unknown Spanish group participant
	39.	“…if they came up with [a shot for] every three months, for a person, a trans person, that is literally at risk, I think that a shot, literally, would be more effective.”	48, American Indian/Alaska Native
	40.	“I’m afraid of needles and that’s why I prefer that they give me pills. Needles send me into a panic and I prefer the pill.”	38, Latina
	41.	“For me, the injection would be good.”	Unknown Spanish group participant
Unique theme in English focus group: Discrimination compelling sex work	42.	“…we’re forced into the sex trade because we can’t get jobs anywhere else …we’re made to feel that the only value we have is what a cis man will pay to get between our legs.”	29, Multiracial
	43.	“A lot of transgenders are sex workers.”	34, Black
	44.	“We’re treating an open wound with a Band-Aid. We need to investigate and deal with the root causes of why this community is at risk…Legalize prostitution…put strictures and laws in place to protect people who are forced to work the sex trade…make HIV PrEP a part of the licensing that we would need to have in order to legalize it.”	29, Multiracial

Limited provider education of patients about PrEP

Several participants said that they had not learned about PrEP from providers. One said she had heard about PrEP from gay male friends, but not from her provider (Statements 7–9).

Concerns about possible side effects.

Several participants in both groups had concerns about possible side effects and safety of PrEP (Statements 10–13). One participant in the English group expressed concern that after three years PrEP would prove toxic and fatal (Statement 11).

Issues related to hormones

Participants in the English group said that TW have competencies related to taking hormones and self-advocacy that could help support PrEP adherence (Statements 14–15). One Spanish group participant raised the issue of how hormones interact with other medications. Two other participants described experiences with hormones, including injectable hormones purchased “on the street” (Statements 16–18).

Concerns about adherence under the influence of substances

Participants in both groups expressed concern that using substances could interfere with adherence to PrEP (Statements 19–21).

The importance of poverty as social context for TW

Participants in both groups raised concerns about poverty as a contextual factor for TW considering PrEP (Statements 22–26). Participants described how poverty would prevent them from affording PrEP, if their insurance did not cover it. Poverty causes housing instability. One English focus group participant said that housing instability could affect adherence to PrEP among TW (Statement 23).

Distrust of the government and/or medical establishment, and AIDS conspiracy beliefs

Participants in both groups expressed distrust of the government and/or of the medical establishment as reasons why they might hesitate to consider taking PrEP (Statements 27–29). One participant in the English group said that the government “could’ve … invented AIDS in the first place” (Statement 28).

The belief that PrEP is for gay men (and not TW)

Participants in both groups expressed the feeling that PrEP is for gay men, or gay White men—i.e., People with privilege—and not for TW (Statements 30–31). PrEP marketing may have contributed to this.

The need for gender-affirming health care

Several participants in both focus groups reported limited provider competency regarding transgender health care (Statements 32–36). One participant noted that her clinician provides care to several transgender patients, but he had not raised the issue of PrEP with her (Statement 32). Given that this TW was having sex with men and had had condomless sex at least once in the past three months (questions that were asked on the screener), the provider should have screened her for sexual risk behavior and discussed PrEP as a prevention option with her.

Thoughts on various modalities of PrEP

Focus group participants expressed preferences for different modalities of PrEP (Statements 37–41). Some participants in both focus groups said that both pills and injectable PrEP would be acceptable to them as individuals or to TW in general.

Discrimination compelling sex work

One unique theme emerged in the English focus group: participants spoke of the importance of addressing discrimination which forces some TW into sex work, and the criminalization of sex work (Statements 42–44).

Risk of contracting other STIs

One unique theme emerged in the Spanish focus group: the risk of contracting other sexually transmitted infections (STIs) if a person used PrEP but did not use a condom. One participant said: “Better to use the condom because … you run the risk of being infected with other things” (Statement 12).

Discussion

Implications for clinical practice

PrEP has the potential to reduce HIV infections among TW. Health care providers should educate their transgender patients about PrEP as an HIV prevention option, and help them to access it. Both public and private insurance covers PrEP, and a manufacturer patient assistance program may cover copays. Because many TW do not have access to regular health care, it is important that public health departments engage in innovative approaches to educate TW about PrEP. One-third of transgender people in a recent national sample did not see a doctor when needed in the past year because they could not afford it (James et al., 2016). White gay men are disproportionately availing themselves of PrEP, while others, including TW, are not accessing PrEP at the rates necessary to reduce new infections (Goldstein, Streed, & Cahill, 2018). Public health and provider campaigns promoting PrEP to transgender women are needed.

PrEP education campaigns should explicitly address potential side effects, and providers should discuss these possible effects with their patients. Questions about PrEP and hormone interactions should also be explicitly addressed. Experiences with hormones are relevant to PrEP in two ways. First, TW advocate for their own gender affirming health care needs when they seek out and use hormones. Experience adhering to regular hormone use could indicate an ability to adhere to daily oral PrEP. Second, some TW are concerned that hormones will interfere with the effectiveness of PrEP, or that PrEP will cause their feminizing hormones to not be as effective. Discussing what is known about each of these concerns could increase trust of health care providers, and could improve PrEP uptake in this population. Recent research indicates that PrEP does not affect feminizing hormones, and that hormones may slightly reduce the concentration of tenofovir (Highleyman, 2018).

Participants reported that poverty is a concern for transgender patients. Community-based social service providers should help address structural drivers of vulnerability, such as poverty and unstable housing, and help transgender people earn a living so that they can take care of their basic needs. Healthy Divas (No author, n.d.) and TWEET (Community Healthcare Network, 2017) are two evidence-informed interventions that could help TW find employment and care for themselves. In addition, providers should screen patients for substance use and refer to treatment as necessary.

Lack of trust with medical professionals and mistreatment in healthcare settings are central barriers to care for TW (Bradford, Reisner, Honnold, & Xavier, 2013). Thirty-three percent of respondents to a recent national transgender survey reported experiencing at least one negative event in a healthcare setting related to their gender identity, and 23% chose to forego necessary health care due to fear of discrimination (James et al., 2016). TW report negative interactions with healthcare providers, and sometimes prioritize their transition-related care over their HIV care (Sevelius, Patouhas, Keatley, & Johnson, 2014). Health care institutions and departments should address medical mistrust among TW by training staff to provide affirming, culturally relevant care. This should include the routine collection and use of gender identity data in clinical settings, and the use of preferred pronouns and names by clinicians and non-clinical staff. Health care institutions should adopt gender identity nondiscrimination policies, as per the recommendation of the Joint Commission in 2011 (Joint Commission, 2011), and train staff to understand what those nondiscrimination policies mean for patient care. For TW living with HIV, integrating hormone therapy with antiretroviral therapy improves engagement and retention in care (Sevelius et al., 2014). It is likely that offering PrEP for HIV prevention in a broader context of gender affirming health care will also be more effective than offering PrEP in isolation. According to Sevelius, Deutsch, and Grant (2016), “Gender-affirming providers and clinic environments are essential components of any sexual health program that aims to serve trans women, as they will largely avoid settings that may result in stigmatizing encounters and threats to their identities” (Sevelius et al., 2016, page 1). Local and state public health departments should promote transgender-affirming care in all health care institutions, as the HRSA Bureau of Primary Care has done by funding the National LGBT Health Education Center to train health centers since 2011.

Many factors contribute to the high risk of HIV infection for TW, including sexual risk-taking, discrimination, violence, poverty, high unemployment, and housing instability (UNAIDS, 2013). Transgender people experience high levels of prejudice and violence (Reisner, White Hughto, Gamarel, et al., 2016). Experiencing discrimination is associated with negative physical and mental health outcomes among transgender people (Reisner et al., 2015). Transgender people who experience discrimination in health care are less likely to seek subsequent care (Ibid.). Participation in sex work, and its criminalization, may increase the vulnerability of TW to HIV infection. Anti-transgender discrimination also contributes to economic and social marginalization, which can increase vulnerability to HIV infection. Given that stigma is one of the primary reasons why TW avoid seeking medical treatment (White Hughto, Reisner, & Pachankis, 2015), providers should adopt a trauma informed approach with their transgender patients. This approach prioritizes the safety of the individual and attempts to cultivate a high level of trust and transparency, which makes the patient as comfortable as possible despite the prior traumas they have experienced (SAMHSA, 2014).

Twelve percent of transgender people in a recent national survey reported lifetime sex work, and 9% reported sex work within the last year. (James et al., 2016). TW who engage in sex work may not be able to make typical office hour appointments (9am-5pm). TW may not be able to access healthcare if they are unable to find a clinic that is conveniently located and can accommodate their schedule. Clinics should offer appointments beyond traditional office hours and provide transportation from a location frequented by TW to the clinic.

Implications for public health policy

Because TW living with HIV are less likely than other populations to adhere to their antiretroviral medications (Sevelius, Carrico, & Johnson, 2010), and because adherence to PrEP is essential to its preventive effectiveness, creative approaches to supporting PrEP adherence among TW should be developed. Lessons learned from the field of HIV treatment adherence with TW (Volpi & Cahill, 2018) can provide a foundation for these approaches. Culturally-specific programs that offer “one stop shopping” for hormones and PrEP, may help increase engagement, uptake, and adherence.

Transgender people experience high rates of work-place discrimination, twice the rate of poverty as the general population (29% versus 14%), and three times the rate of unemployment as the general population (15% vs. 5%) (James et al., 2016). Thirty percent report lifetime homelessness, and 12% in the last year. (Ibid). Higher rates of poverty and unemployment make transgender people less likely to have health insurance and access to health care. Expansion of categorical eligibility for Medicaid under the Affordable Care Act to include low-income individuals without a disability or dependent children could benefit many transgender women who live in non-expansion states. Most of these are in the South, where half of Black Americans live (Kaiser Family Foundation, 2018).

Because of the strong correlation between anti-transgender discrimination and poorer health outcomes and access (Reisner et al., 2015), municipalities and states should add “actual or perceived gender identity” to their nondiscrimination statutes. Public health departments should challenge anti-transgender prejudice as a threat to the health of transgender people. Corporate and philanthropic leaders should promote transgender community-based organizations and leaders, and hire TW to reduce unemployment and poverty. These changes would enable more TW to access employer provided health insurance, or Medicaid, and access regular preventive health care, including PrEP.

Limitations

Important limitations of this study must be noted. First, the number of participants in the two focus groups represents a small sample of TW in San Francisco. While Black, White, Latina, Native American, and multiracial TW are represented, Asian Pacific Islander transgender women are not. Second, TW came to the groups via recruitment through advertising at local bars, cruising areas, and health facilities, while others came through word of mouth. Individuals connected to specific social networks might have been overselected for participation in the study. Third, some themes were repeated across the two focus groups, indicating some evidence of data saturation. However, due to the relatively small sample size, other issues may affect TW’s knowledge of and attitudes toward PrEP which were not raised in our focus groups. Finally, the medical mistrust that was expressed in both focus groups raises the question whether those TW who are the most mistrustful of health care providers and institutions would participate in the focus groups held at a university research center focused on transgender health. It is likely that they would not. While this is a potential limitation, robust medical mistrust was expressed by participants, and the some of the recruiters were TW.

Conclusion

PrEP holds great potential to reduce new HIV infections among TW. We must reduce medical mistrust by ensuring culturally relevant, gender affirming care for transgender patients, including collection of gender identity data in clinical settings. Providers and HIV testers should routinize obtaining a sexual history and be trained to discuss possible PrEP use with high-risk individuals. HIV stigma and anti-transgender prejudice should also be challenged through public education campaigns. Structural changes to ensure legal equality for transgender people will also improve the health of transgender people across the U.S.