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Current Issues in HIV Research
with Transgender Populations
Jae Sevelius, PhD
Assistant Professor
Center for AIDS Prevention Studies
Department of Medicine
Centers for Disease Control and Prevention
Translating Research into Practice
July 2015
In diversity there is beauty
and there is strength.
- Maya Angelou
Commonly used terminology
 Gender identity
 Gender expression
 Genderqueer/Gender non-conforming
 Transgender/Trans
 Transgender woman/Trans woman
 Transgender man/Trans man
 Intersex/Disorders of Sex Development
 Transition
 Cisgender/Non-transgender
Gender Identity Disorder (GID) vs. Gender Dysphoria
Population size estimates
 U.S. estimates range from 0.3% – 0.5%
 Approx 956,700 – 1,594,500 trans people in U.S.
 For comparison, in 2013 U.S. census data:
 0.2% of people reported their race/ethnicity as Native
Hawaiian or Other Pacific Islander
 0.9% reported their race as American Indian or Alaska
Native
Conron et al. 2012; Williams Institute, 2011
Johanna
Data collection challenges
 “If you don’t count us, we don’t count.”
 Why count trans people?
 Which trans people count?
Bestpracticesfortrans-inclusivedatacollection
 Two-step measure:
1) What is your current gender identity?
 Female
 Male
 Transgender female
 Transgender male
 Genderqueer/Gender non-conforming
 Different identity (please state):
2) What was your assigned sex at birth (on your original birth
certificate)?
 Female
 Male
Any difference between the two flags a person with an identity on the trans
spectrum.
Center of Excellence forTransgender Health, 2009;The GenIUSS Group, 2014
Bestpracticesfortrans-inclusivedatacollection
 Single item measure:
Some people describe themselves as transgender when
they experience a different gender identity from their sex at
birth. For example, a person born into a male body, but who
feels female or lives as a woman.
Do you consider yourself to be transgender?
 Yes, transgender, male to female
 Yes, transgender, female to male
 Yes, transgender, gender non-conforming
 No
Conron et al., 2011
History of invisibility
HIV-relateddisparitiesamongtranswomen
 34 times higher odds of infection than general
population in U.S. (Baral et al, 2013)
 Highest percentage of newly identified HIV-
positive test results (2.1%), compared to non-
trans males (1.2%) and non-trans females
(0.4%). (CDC, 2011)
 Almost 3x higher community viral load than non-
trans adults in SF (Das et al, 2010)
 African-American transgender women are
disproportionately affected (Herbst et al, 2008)
0
10
20
30
40
50
60
70
Latina African-
American
A&PI White Mixed Race
HIV prevalence among transgender women
in U.S. regional studies, by ethnicity
Transgender women
have highest rates of
HIV of any group
These rates are
included in rates of
HIV among MSM
$$$ is allocated
to research and
services for MSM
based on these rates
Impact on Research:
# of EBIs for trans women: 0
iPrEx: No evidence that PrEP
works for trans women
Impact on Services:
MSM service organizations
do not effectively include
and serve trans women
Use of the BRP
“MSM” contributes
to HIV-related
disparities among
trans women
Access to
gender
affirmation
Need for
gender
affirmation
Desire for
transition-related
procedures
Desire to be
affirmed as
female
Desire to “pass” or
“live stealth”
Gender affirming
health care
Ability to “pass”
Affirming relationships:
Family, peers, and/or
lovers and sex partners
Sevelius, J. 2012. Sex Roles
NEED
for gender affirmation
LOW HIGH
ACCESS
to gender
affirmation
LOW Lower risk HIGHEST risk
HIGH Lowest risk Lower risk
Stigma
Social Oppression
Psychological
Distress
Decreased
access to gender
affirmation
Increased need for
gender
affirmation
UNMET
NEED
Psychological distress
Reduced self-care
Risk behavior
Model of GenderAffirmation
Sevelius, J. 2012. Sex Roles
Gender
affirmation
(hormones/s
urgery, social
affirmation)
Decreased
depression
Improved
health,
quality of life
Decreased
sexual risk
Budge et al. 2013. J Clin Couns Psych
Gorin-Lazard et al. 2012 J of Sex Med
Colton et al. 2011. J of Gay Lesb Ment Health
Sevelius, in press
Trans men and HIV
 Risk behaviors among
TMSM:
 ncRAI/ncRVI: 26 – 60%
 STDs/unintended pregnancies
 Sex for gender affirmation
 HIV prevalence studies:
 Small convenience samples
 Estimates range from 2 – 5%
Reisner et al. 2013; Sevelius 2009; Light et al. 2014; Herbst et al. 2008
HIV treatment-relateddisparities
 Transgender women living with HIV (TWH) are
 less likely to take antiretroviral therapy (ART)
Those who do initiate ART:
 have lower rates of ART adherence
 have lower self-efficacy for integrating ART into daily
routines
 report fewer positive interactions with health care
providers than non-transgender adults
Melendez et al, 2005; Sevelius, Carrico, & Johnson, 2011
Talia
BarriersandfacilitatorstoHIVtreatment
engagementandadherence
 Facilitators:
 receiving culturally competent, trans-informed healthcare
 integration of hormone therapy and HIV treatment
 Barriers:
 avoidance of healthcare due to stigma and past negative
experiences
 prioritization of transition-related healthcare
 concerns about adverse interactions between
antiretroviral treatment for HIV and hormone therapy
Sevelius et al, 2014. Ann Beh Med
Trans women and PrEP
 Low levels of awareness, even in SF
 No trans-specific guidance for
implementation (WHO, CDC)
 Low levels of enrollment and retention in
demonstration projects
 Rarely included in observational studies,
rarely disaggregated
 Of the 7 clinical trials, iPrEx is the only one
with confirmed enrollment of trans women
Escudero et al. 2014
 Of the 2499 participants:
 29 (1%) identified as women
 296 (12%) identified as “trans”
 14 (1%) reported use of feminizing hormones
 339 (14%) reported one or more of these
characteristics.
 Among trans women:
 11 HIV infections in the active arm
 10 in the placebo arm
 Hazard ratio of 1.1 (95%CI: 0.5 to 2.7)
 Zero effectiveness on an intention to treat basis
 Those on hormones were less likely to have
protective drug levels than those not on
hormones
Trans women in iPrEx
Grant et al. 2014; Deutsch et al. 2014
“Never”: no detection of TFV-DP at any visit
“Some”: detection at more than one but less than all visits
“Always”: detection at all visits
Consistency of drug detection, gender, and non-condom
receptive anal intercourse (ncRAI)
PrEP acceptability among trans women
 Qualitative data collection with transgender women
in San Francisco:
 3 focus groups
 9 individual interviews
 total N=30
 Focused on knowledge of, interest in, and concerns
about PrEP for HIV prevention
 Transcripts were analyzed in an iterative process
using a template analysis framework
 Results presented here focus on issues of particular
relevance to trans women
Sevelius, in press
Results: Facilitators/Barriers
to PrEP acceptability
 Facilitators
 obtaining PrEP from a trans-informed provider
 education about PrEP from trusted sources
 risk perception
 Barriers
 information not disseminated via trans networks
 concerns about interactions with hormones
 medical mistrust
“Some of us, you know, we do sex work on the
side, and some of us, we’re part of that
marginalized community and we don’t really
have that much opportunity for employment. So
we end up trying to make a quick buck with sex
work and that’s a lot of exposure, and that’s a
risk and I think that’s one of the reasons why I
would go for it.”
Risk perception and acceptability
- African American, age 33
Concerns about interactions with hormones
“If it stopped my hormone progress, I would be
irate, because I like to look pretty and pretty is
a soft face. And if hormones do not give me
that soft face while taking a pill that’s
supposed to stop something that condoms do
pretty just fine doing by themselves…that
would definitely make me stop
instantaneously.”
- African American, age 27
“I would love to see stats on trans involvement [with
PrEP] and I would like to see it talked about a little
more because trans women, just being trans women,
are at risk for HIV, AIDS and STDs. So anything that
can detour that risk, definitely needs to be had in
broader conversations…and brought to the same
plateau as it has been [discussed] in the gay
community. Because, I’m pretty sure it’s being talked
about like it’s the holy grail over in the gayborhood.
But it’s not being talked about over here in
Transtasia.”
Lack of information via trans networks
- African American, age 35
Medical mistrust
“Most [providers] see us as gay men and most
don’t understand that we’re women and most
don’t treat us as such…So, I have gone to [a
PrEP clinic in San Francisco] before for testing
and I felt completely uncomfortable because I
am the only trans woman sitting there, and
yet they see me as just another guy. It’s like,
it’s not fair...Everyone has the right to the
same healthcare.”
- Focus Group 2
Recommendations
 We can promote PrEP uptake among trans
women by:
 Identifying opportunities for disseminating
information about PrEP via trans networks
 Discussing PrEP in the context of broader
conversations about sexual health and wellness,
transition-related goals
 Addressing misinformation and assumptions,
including medical mistrust
Syndemic
theory
Poor
mental
health
Substance
use
Trauma
StigmaPoverty
HIV
Incarceration
Operario D, et al. 2010. AJPH
Transphobia
Poor health
outcomes
Social
support
Identity
pride
Coping
Gender
affirmation
Resilience / Protective Factors
Funded by NIH/NIMH R34MH102109, K08MH085566,
CHRP Community Collaborative Award
Session Topic
1 Gender Pride
2 Looking Good, Feeling Good
3 Let’s Talk About Sex
4 Taking Back the Power
5 Surviving and Thriving
6 sessions with peer educator, 1 group workshop
Funded by NIH/NIMH R01MH106373, California HIV/AIDS Research Program IDEA award, UCSF
Academic Senate Individual Investigator Grant 555242-34935, CAPS Innovative Award
Intervention to optimize engagement in HIV care and
medication adherence among HIV+ transgender women
For incarcerated trans women preparing to return to the community
Systematic adaptation and pilot RCT of Project START intervention
Focus is on linkage to and engagement in health care in 4 domains:
1) HIV testing and prevention (for HIV- or unknown status
participants) or HIV treatment (for HIV+ participants),
2) substance use treatment,
3) mental health care, and
4) transgender-related medical care.
Funded by NIH/NIDA R34DA038541
Research gaps
 Trans men and HIV risk/sexual health needs
 Addressing trans people’s needs in sex-
segregated settings (e.g. shelters, corrections
facilities, substance abuse treatment)
 Trans-inclusive PrEP implementation guidance
 Barriers and facilitators to trans inclusion in
services for gender of identity (e.g.
#WeAreAllWomen)
the power of being seen
www.transhealth.ucsf.edu
Thank you!
jae.sevelius@ucsf.edu
Herbst, J., Jacobs, E., Finlayson,T., McKleroy,V., Neumann, M., & Crepaz, N. (2008).
Estimating HIV prevalence and risk behaviors of transgender persons in the United
States: A systematic review. AIDS and Behavior, 12(1), 1-17. doi: 10.1007/s10461-007-
9299-3
Baral SD, PoteatT, Stromdahl S, Wirtz AL, GuadamuzTE, Beyrer C.Worldwide burden
of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect
Dis 2013;13:214-22.
BocktingWO, Miner MH, Swinburne Romine RE, Hamilton A, Coleman E. Stigma,
Mental Health, and Resilience in an Online Sample of the USTransgender Population.
American Journal of Public Health 2013:e1-e9. doi: 10.2105/ajph.2013.301241.
Budge SL,Adelson JL, Howard KAS.Anxiety and Depression inTransgender
Individuals:The Roles ofTransition Status, Loss, Social Support, and Coping. Journal
of Consulting and Clinical Psychology 2013
Conron, K. J., Scott, G., Stowell, G. S., & Landers, S. J. (2011).Transgender Health in
Massachusetts: Results From a Household Probability Sample of Adults. American
Journal of Public Health, 102(1), 118-122. doi: 10.2105/ajph.2011.300315
Das M, Chu PL, Santos GM, et al. Decreases in CommunityViral Load Are
Accompanied by Reductions in New HIV Infections in San Francisco. PLoS One
2010;5:e11068.
References
Budge SL,Adelson JL, Howard KAS.Anxiety and Depression inTransgender Individuals:
The Roles ofTransition Status, Loss, Social Support, and Coping. Journal of Consulting
and Clinical Psychology 2013
BocktingWO, Miner MH, Swinburne Romine RE, Hamilton A, Coleman E. Stigma, Mental
Health, and Resilience in an Online Sample of the USTransgender Population. American
Journal of Public Health 2013:e1-e9. doi: 10.2105/ajph.2013.301241.
Clements-Nolle K, Marx R, Guzman R, Katz M. 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 doi:
10.2105/AJPH.91.6.915. PMCID: 1446468
Colton Meier SL, Fitzgerald KM, Pardo ST, Babcock J.The Effects of Hormonal Gender
AffirmationTreatment on Mental Health in Female-to-MaleTranssexuals. Journal of Gay
& Lesbian Mental Health 2011;15(3):281-299. doi: 10.1080/19359705.2011.581195.
Nuttbrock L, BocktingW, Hwahng S, RosenblumA, Mason M, Macri M, et al. Gender
identity affirmation among male-to-female transgender persons:A life course analysis
across types of relationships and cultural/lifestyle factors. Sexual and Relationship
Therapy 2009;24(2):108 - 125. DOI: 10.1080/14681990902926764
Nuttbrock L, RosenblumA, Blumenstein R.Transgender identity affirmation and mental
health. International Journal ofTransgenderism 2002;6(4)
Light,A. D., et al. (2014). "Transgender MenWho Experienced Pregnancy After Female-
to-Male GenderTransitioning." Obstetrics & Gynecology.
NemotoT, Bödeker B, Iwamoto M. Social Support, Exposure toViolence and
Transphobia, and Correlates of DepressionAmong Male-to-FemaleTransgender Women
With a History of SexWork. American Journal of Public Health 2011;101(10):1980-1988.
doi: 10.2105/ajph.2010.197285.
Reisner, S. L.,White, J. M., Mayer, K. H., & Mimiaga, M. J. (2013). Sexual risk behaviors
and psychosocial health concerns of female-to-male transgender men screening for
STDs at an urban community health center. AIDS Care, 26(7), 857-864. doi:
10.1080/09540121.2013.855701
Sevelius, J. (2009). ‘‘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, 20(5), 398-410. doi:
10.1016/j.jana.2009.06.001
Sevelius, J. (2013). "Gender Affirmation: A Framework for Conceptualizing Risk Behavior
amongTransgender Women of Color." Sex Roles 68(11-12): 675-689.
Sevelius, J., et al. (2014). "Barriers and Facilitators to Engagement and Retention in Care
amongTransgender Women Living with Human ImmunodeficiencyVirus." Annals of
Behavioral Medicine 47(1): 5-16.
Sevelius, J., et al. (2014). "Correlates of antiretroviral adherence and viral load among
transgender women living with HIV." AIDS Care: 1-7.
Tate, C. C., Ledbetter, J. N., &Youssef, C. P. (2012). ATwo-Question Method for
AssessingGender Categories in the Social and Medical Sciences. Journal of Sex
Research, 1-10. doi: 10.1080/00224499.2012.690110
The GenIUSSGroup. (2014). Best Practices for AskingQuestions to IdentifyTransgender
and Other Gender Minority Respondents on Population-Based Surveys. In J. L. Herman
(Ed.). Los Angeles,CA:TheWilliams Institute.
Grant R, Lama JR, Anderson PL, et al. Preexposure Chemoprophylaxis for HIV
Prevention in Men Who Have Sex with Men. New England Journal of Medicine.
2010;363(27):2587-2599.
Escudero DJ, KerrT, Operario D, Socías ME, Sued O, Marshall BDL. Inclusion of trans
women in pre-exposure prophylaxis trials: a review. AIDS Care. 2014;27(5):637-641.
Deutsch M, Sevelius J, Glidden D, Grant R. Preexposure Chemoprophylaxis for HIV
Prevention InTransgender Women. European ProfessionalAssociation forTransgender
Health; 2015; Ghent, Belgium.

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Presentation at the CDC

  • 1. Current Issues in HIV Research with Transgender Populations Jae Sevelius, PhD Assistant Professor Center for AIDS Prevention Studies Department of Medicine Centers for Disease Control and Prevention Translating Research into Practice July 2015
  • 2. In diversity there is beauty and there is strength. - Maya Angelou
  • 3.
  • 4. Commonly used terminology  Gender identity  Gender expression  Genderqueer/Gender non-conforming  Transgender/Trans  Transgender woman/Trans woman  Transgender man/Trans man  Intersex/Disorders of Sex Development  Transition  Cisgender/Non-transgender
  • 5. Gender Identity Disorder (GID) vs. Gender Dysphoria
  • 6.
  • 7. Population size estimates  U.S. estimates range from 0.3% – 0.5%  Approx 956,700 – 1,594,500 trans people in U.S.  For comparison, in 2013 U.S. census data:  0.2% of people reported their race/ethnicity as Native Hawaiian or Other Pacific Islander  0.9% reported their race as American Indian or Alaska Native Conron et al. 2012; Williams Institute, 2011
  • 9. Data collection challenges  “If you don’t count us, we don’t count.”  Why count trans people?  Which trans people count?
  • 10. Bestpracticesfortrans-inclusivedatacollection  Two-step measure: 1) What is your current gender identity?  Female  Male  Transgender female  Transgender male  Genderqueer/Gender non-conforming  Different identity (please state): 2) What was your assigned sex at birth (on your original birth certificate)?  Female  Male Any difference between the two flags a person with an identity on the trans spectrum. Center of Excellence forTransgender Health, 2009;The GenIUSS Group, 2014
  • 11. Bestpracticesfortrans-inclusivedatacollection  Single item measure: Some people describe themselves as transgender when they experience a different gender identity from their sex at birth. For example, a person born into a male body, but who feels female or lives as a woman. Do you consider yourself to be transgender?  Yes, transgender, male to female  Yes, transgender, female to male  Yes, transgender, gender non-conforming  No Conron et al., 2011
  • 12.
  • 14. HIV-relateddisparitiesamongtranswomen  34 times higher odds of infection than general population in U.S. (Baral et al, 2013)  Highest percentage of newly identified HIV- positive test results (2.1%), compared to non- trans males (1.2%) and non-trans females (0.4%). (CDC, 2011)  Almost 3x higher community viral load than non- trans adults in SF (Das et al, 2010)  African-American transgender women are disproportionately affected (Herbst et al, 2008)
  • 15. 0 10 20 30 40 50 60 70 Latina African- American A&PI White Mixed Race HIV prevalence among transgender women in U.S. regional studies, by ethnicity
  • 16. Transgender women have highest rates of HIV of any group These rates are included in rates of HIV among MSM $$$ is allocated to research and services for MSM based on these rates Impact on Research: # of EBIs for trans women: 0 iPrEx: No evidence that PrEP works for trans women Impact on Services: MSM service organizations do not effectively include and serve trans women Use of the BRP “MSM” contributes to HIV-related disparities among trans women
  • 17. Access to gender affirmation Need for gender affirmation Desire for transition-related procedures Desire to be affirmed as female Desire to “pass” or “live stealth” Gender affirming health care Ability to “pass” Affirming relationships: Family, peers, and/or lovers and sex partners Sevelius, J. 2012. Sex Roles
  • 18. NEED for gender affirmation LOW HIGH ACCESS to gender affirmation LOW Lower risk HIGHEST risk HIGH Lowest risk Lower risk
  • 19. Stigma Social Oppression Psychological Distress Decreased access to gender affirmation Increased need for gender affirmation UNMET NEED Psychological distress Reduced self-care Risk behavior Model of GenderAffirmation Sevelius, J. 2012. Sex Roles
  • 20. Gender affirmation (hormones/s urgery, social affirmation) Decreased depression Improved health, quality of life Decreased sexual risk Budge et al. 2013. J Clin Couns Psych Gorin-Lazard et al. 2012 J of Sex Med Colton et al. 2011. J of Gay Lesb Ment Health Sevelius, in press
  • 21. Trans men and HIV  Risk behaviors among TMSM:  ncRAI/ncRVI: 26 – 60%  STDs/unintended pregnancies  Sex for gender affirmation  HIV prevalence studies:  Small convenience samples  Estimates range from 2 – 5% Reisner et al. 2013; Sevelius 2009; Light et al. 2014; Herbst et al. 2008
  • 22. HIV treatment-relateddisparities  Transgender women living with HIV (TWH) are  less likely to take antiretroviral therapy (ART) Those who do initiate ART:  have lower rates of ART adherence  have lower self-efficacy for integrating ART into daily routines  report fewer positive interactions with health care providers than non-transgender adults Melendez et al, 2005; Sevelius, Carrico, & Johnson, 2011
  • 23. Talia
  • 24. BarriersandfacilitatorstoHIVtreatment engagementandadherence  Facilitators:  receiving culturally competent, trans-informed healthcare  integration of hormone therapy and HIV treatment  Barriers:  avoidance of healthcare due to stigma and past negative experiences  prioritization of transition-related healthcare  concerns about adverse interactions between antiretroviral treatment for HIV and hormone therapy Sevelius et al, 2014. Ann Beh Med
  • 25. Trans women and PrEP  Low levels of awareness, even in SF  No trans-specific guidance for implementation (WHO, CDC)  Low levels of enrollment and retention in demonstration projects  Rarely included in observational studies, rarely disaggregated  Of the 7 clinical trials, iPrEx is the only one with confirmed enrollment of trans women Escudero et al. 2014
  • 26.  Of the 2499 participants:  29 (1%) identified as women  296 (12%) identified as “trans”  14 (1%) reported use of feminizing hormones  339 (14%) reported one or more of these characteristics.  Among trans women:  11 HIV infections in the active arm  10 in the placebo arm  Hazard ratio of 1.1 (95%CI: 0.5 to 2.7)  Zero effectiveness on an intention to treat basis  Those on hormones were less likely to have protective drug levels than those not on hormones Trans women in iPrEx Grant et al. 2014; Deutsch et al. 2014
  • 27. “Never”: no detection of TFV-DP at any visit “Some”: detection at more than one but less than all visits “Always”: detection at all visits Consistency of drug detection, gender, and non-condom receptive anal intercourse (ncRAI)
  • 28. PrEP acceptability among trans women  Qualitative data collection with transgender women in San Francisco:  3 focus groups  9 individual interviews  total N=30  Focused on knowledge of, interest in, and concerns about PrEP for HIV prevention  Transcripts were analyzed in an iterative process using a template analysis framework  Results presented here focus on issues of particular relevance to trans women Sevelius, in press
  • 29. Results: Facilitators/Barriers to PrEP acceptability  Facilitators  obtaining PrEP from a trans-informed provider  education about PrEP from trusted sources  risk perception  Barriers  information not disseminated via trans networks  concerns about interactions with hormones  medical mistrust
  • 30. “Some of us, you know, we do sex work on the side, and some of us, we’re part of that marginalized community and we don’t really have that much opportunity for employment. So we end up trying to make a quick buck with sex work and that’s a lot of exposure, and that’s a risk and I think that’s one of the reasons why I would go for it.” Risk perception and acceptability - African American, age 33
  • 31. Concerns about interactions with hormones “If it stopped my hormone progress, I would be irate, because I like to look pretty and pretty is a soft face. And if hormones do not give me that soft face while taking a pill that’s supposed to stop something that condoms do pretty just fine doing by themselves…that would definitely make me stop instantaneously.” - African American, age 27
  • 32. “I would love to see stats on trans involvement [with PrEP] and I would like to see it talked about a little more because trans women, just being trans women, are at risk for HIV, AIDS and STDs. So anything that can detour that risk, definitely needs to be had in broader conversations…and brought to the same plateau as it has been [discussed] in the gay community. Because, I’m pretty sure it’s being talked about like it’s the holy grail over in the gayborhood. But it’s not being talked about over here in Transtasia.” Lack of information via trans networks - African American, age 35
  • 33. Medical mistrust “Most [providers] see us as gay men and most don’t understand that we’re women and most don’t treat us as such…So, I have gone to [a PrEP clinic in San Francisco] before for testing and I felt completely uncomfortable because I am the only trans woman sitting there, and yet they see me as just another guy. It’s like, it’s not fair...Everyone has the right to the same healthcare.” - Focus Group 2
  • 34. Recommendations  We can promote PrEP uptake among trans women by:  Identifying opportunities for disseminating information about PrEP via trans networks  Discussing PrEP in the context of broader conversations about sexual health and wellness, transition-related goals  Addressing misinformation and assumptions, including medical mistrust
  • 37. Funded by NIH/NIMH R34MH102109, K08MH085566, CHRP Community Collaborative Award Session Topic 1 Gender Pride 2 Looking Good, Feeling Good 3 Let’s Talk About Sex 4 Taking Back the Power 5 Surviving and Thriving
  • 38. 6 sessions with peer educator, 1 group workshop Funded by NIH/NIMH R01MH106373, California HIV/AIDS Research Program IDEA award, UCSF Academic Senate Individual Investigator Grant 555242-34935, CAPS Innovative Award Intervention to optimize engagement in HIV care and medication adherence among HIV+ transgender women
  • 39. For incarcerated trans women preparing to return to the community Systematic adaptation and pilot RCT of Project START intervention Focus is on linkage to and engagement in health care in 4 domains: 1) HIV testing and prevention (for HIV- or unknown status participants) or HIV treatment (for HIV+ participants), 2) substance use treatment, 3) mental health care, and 4) transgender-related medical care. Funded by NIH/NIDA R34DA038541
  • 40. Research gaps  Trans men and HIV risk/sexual health needs  Addressing trans people’s needs in sex- segregated settings (e.g. shelters, corrections facilities, substance abuse treatment)  Trans-inclusive PrEP implementation guidance  Barriers and facilitators to trans inclusion in services for gender of identity (e.g. #WeAreAllWomen)
  • 41. the power of being seen
  • 44. Herbst, J., Jacobs, E., Finlayson,T., McKleroy,V., Neumann, M., & Crepaz, N. (2008). Estimating HIV prevalence and risk behaviors of transgender persons in the United States: A systematic review. AIDS and Behavior, 12(1), 1-17. doi: 10.1007/s10461-007- 9299-3 Baral SD, PoteatT, Stromdahl S, Wirtz AL, GuadamuzTE, Beyrer C.Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect Dis 2013;13:214-22. BocktingWO, Miner MH, Swinburne Romine RE, Hamilton A, Coleman E. Stigma, Mental Health, and Resilience in an Online Sample of the USTransgender Population. American Journal of Public Health 2013:e1-e9. doi: 10.2105/ajph.2013.301241. Budge SL,Adelson JL, Howard KAS.Anxiety and Depression inTransgender Individuals:The Roles ofTransition Status, Loss, Social Support, and Coping. Journal of Consulting and Clinical Psychology 2013 Conron, K. J., Scott, G., Stowell, G. S., & Landers, S. J. (2011).Transgender Health in Massachusetts: Results From a Household Probability Sample of Adults. American Journal of Public Health, 102(1), 118-122. doi: 10.2105/ajph.2011.300315 Das M, Chu PL, Santos GM, et al. Decreases in CommunityViral Load Are Accompanied by Reductions in New HIV Infections in San Francisco. PLoS One 2010;5:e11068. References
  • 45. Budge SL,Adelson JL, Howard KAS.Anxiety and Depression inTransgender Individuals: The Roles ofTransition Status, Loss, Social Support, and Coping. Journal of Consulting and Clinical Psychology 2013 BocktingWO, Miner MH, Swinburne Romine RE, Hamilton A, Coleman E. Stigma, Mental Health, and Resilience in an Online Sample of the USTransgender Population. American Journal of Public Health 2013:e1-e9. doi: 10.2105/ajph.2013.301241. Clements-Nolle K, Marx R, Guzman R, Katz M. 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 doi: 10.2105/AJPH.91.6.915. PMCID: 1446468 Colton Meier SL, Fitzgerald KM, Pardo ST, Babcock J.The Effects of Hormonal Gender AffirmationTreatment on Mental Health in Female-to-MaleTranssexuals. Journal of Gay & Lesbian Mental Health 2011;15(3):281-299. doi: 10.1080/19359705.2011.581195. Nuttbrock L, BocktingW, Hwahng S, RosenblumA, Mason M, Macri M, et al. Gender identity affirmation among male-to-female transgender persons:A life course analysis across types of relationships and cultural/lifestyle factors. Sexual and Relationship Therapy 2009;24(2):108 - 125. DOI: 10.1080/14681990902926764 Nuttbrock L, RosenblumA, Blumenstein R.Transgender identity affirmation and mental health. International Journal ofTransgenderism 2002;6(4)
  • 46. Light,A. D., et al. (2014). "Transgender MenWho Experienced Pregnancy After Female- to-Male GenderTransitioning." Obstetrics & Gynecology. NemotoT, Bödeker B, Iwamoto M. Social Support, Exposure toViolence and Transphobia, and Correlates of DepressionAmong Male-to-FemaleTransgender Women With a History of SexWork. American Journal of Public Health 2011;101(10):1980-1988. doi: 10.2105/ajph.2010.197285. Reisner, S. L.,White, J. M., Mayer, K. H., & Mimiaga, M. J. (2013). Sexual risk behaviors and psychosocial health concerns of female-to-male transgender men screening for STDs at an urban community health center. AIDS Care, 26(7), 857-864. doi: 10.1080/09540121.2013.855701 Sevelius, J. (2009). ‘‘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, 20(5), 398-410. doi: 10.1016/j.jana.2009.06.001 Sevelius, J. (2013). "Gender Affirmation: A Framework for Conceptualizing Risk Behavior amongTransgender Women of Color." Sex Roles 68(11-12): 675-689. Sevelius, J., et al. (2014). "Barriers and Facilitators to Engagement and Retention in Care amongTransgender Women Living with Human ImmunodeficiencyVirus." Annals of Behavioral Medicine 47(1): 5-16. Sevelius, J., et al. (2014). "Correlates of antiretroviral adherence and viral load among transgender women living with HIV." AIDS Care: 1-7.
  • 47. Tate, C. C., Ledbetter, J. N., &Youssef, C. P. (2012). ATwo-Question Method for AssessingGender Categories in the Social and Medical Sciences. Journal of Sex Research, 1-10. doi: 10.1080/00224499.2012.690110 The GenIUSSGroup. (2014). Best Practices for AskingQuestions to IdentifyTransgender and Other Gender Minority Respondents on Population-Based Surveys. In J. L. Herman (Ed.). Los Angeles,CA:TheWilliams Institute. Grant R, Lama JR, Anderson PL, et al. Preexposure Chemoprophylaxis for HIV Prevention in Men Who Have Sex with Men. New England Journal of Medicine. 2010;363(27):2587-2599. Escudero DJ, KerrT, Operario D, Socías ME, Sued O, Marshall BDL. Inclusion of trans women in pre-exposure prophylaxis trials: a review. AIDS Care. 2014;27(5):637-641. Deutsch M, Sevelius J, Glidden D, Grant R. Preexposure Chemoprophylaxis for HIV Prevention InTransgender Women. European ProfessionalAssociation forTransgender Health; 2015; Ghent, Belgium.

Editor's Notes

  1. 1
  2. Any talk on trans issues is not going to cover the breadth of identities and experiences. Trans people are incredibly diverse, which is one of many things that make them so inspiring and interesting. It takes tremendous courage to be oneself in the face of a society that tells you you are wrong, crazy, or damaged.
  3. Language used to describe trans people is as diverse as trans people themselves. It is not necessary or possible to know all of the terminology, as it is always changing and varies by geographic location, age cohort, race/ethnicity, and personal preferences. All that is necessary is to listen to the person you are interacting with and refrain from making assumptions. There are many surgical, hormonal, and mental health care options for trans people, although there are not enough providers who are trained and willing to work with trans people. The transition-related health care options that trans people choose to pursue are very personal decisions and there is no one “right” path to follow. Many trans people choose to take hormones without surgically altering their bodies. Many trans people choose some minor surgical procedures but forego genital surgeries for various reasons: to avoid the invasiveness or the possible loss of sexual function, or their genitals are not a locus of dysphoria for them. A more recent development in the array of options available is the provision of puberty-delaying medications, which prevent a trans child in early adolescence from undergoing pubertal changes that do not align with the child’s gender identity. The effects of these puberty-delaying medications are reversible, when they are stopped the adolescent will undergo typical pubertal changes associated with their assigned sex at birth. After a few years of delaying puberty, the adolescent (in collaboration with parents and others) can decide whether to begin transgender hormone treatment or undergo a birth sex-aligned puberty.
  4. GID was first introduced into DSM in the 3rd version, released in 1980. In the DSM-III and IV, GID focused on the "identity" issue -- namely, the incongruity between someone's birth gender and the gender with which he or she identifies. While this incongruity is still crucial to gender dysphoria, the drafters of the new DSM-5 wanted to emphasize the importance of distress about the incongruity for a diagnosis. The shift in the DSM-V reflects recognition that the disagreement between birth gender and identity may not necessarily be pathological if it does not cause the individual distress. Transgender people and their allies have pointed out that distress in gender dysphoria is not an inherent part of being transgender. In contrast, the distress that accompanies gender dysphoria can arise as a result of a culture that stigmatizes people who do not conform to gender norms. The DSM-5 uses the term gender rather than sex to allow for those born with both male and female genitalia to have the condition, while an intersex (or DSD) diagnosis ruled out GID in the DSM-IV.
  5. Many transgender people and researchers support total removal of any diagnosis related to transgender identity because they feel the diagnosis pathologizes gender variance, reinforces the binary model of gender, and can result in stigmatization of transgender individuals. While there have been many instances of the diagnosis being used in a harmful way, the diagnosis can also be useful in legal advocacy for trans people and in providing access to health care and insurance coverage for medical care that would not be covered without a diagnosis of some sort.
  6. Based on 2014 estimates of total US population of 318.9 million
  7. Assumptions that the population size is too small to count. Too much trouble to ask people about gender – they won’t understand the questions. Binary concept of gender is so embedded in our culture that it feels like an upheaval to our fundamental understanding of human biology. “Post- transition identities/desire to live “stealth” Who is counted? Only those who identify explicitly as transgender? Include those who identify as genderqueer? What about people who are not “out” about their identity and/or maintain a gender expression that is aligned with their assigned sex at birth? Who “counts” often depends on the goal of data collection and the language chosen by those that design the data collection methods.
  8. Tested with two presumably equivalent groups of college students and found that this method captured twice the number of trans individuals as a single item question that asked “are you male, female, or transgender?”
  9. Massachusetts landline population-based survey
  10. If considered at all, trans women are often subsumed under the behavioral risk group “MSM” in HIV research, obscuring their unique risks and prevention needs and hindering our understanding of accurate prevalence and incidence rates globally. Even then, trans women are usually included in very small numbers or are referred to using the phrase ‘MSM and transgender women’ or “LGBT” in health research, without disaggregation when presenting results or implications of research findings. So, often it can seem like we know more about trans people than we really do. How we count and categorize people in public health research reveals a great deal about cultural attitudes and social constructions, and also shapes those attitudes and constructions. By subsuming trans women within the category MSM researchers convey several beliefs, including: trans women are men, gender identity is not important in understanding sexual health and preventing HIV, and trans women’s sexual practices and experiences are essentially the same as those of men who are also included in this category. None of these beliefs has been supported by the literature on transgender women’s sexual health, and overriding the self-determined gender identity with public health notions of biology-driven sexual behavior has exacerbated the HIV disparities experience by transgender women.
  11. Also tremendous disparities along other psychosocial dimensions, including depression and suicidality, trauma, anxiety, substance abuse Baral SD, Poteat T, Stromdahl S, Wirtz AL, Guadamuz TE, Beyrer C. Worldwide burden of HIV in transgender women: a systematic review and meta-analysis. Lancet Infect Dis 2013;13:214-22. California Department of Health Services. California HIV counseling and testing annual report: January - December 2003. . Sacramento, CA: Office of AIDS; 2006. Melendez R, Exner T, Ehrhardt A, et al. Health and health care among male-to-female transgender persons who are HIV positive. Am J Public Health 2005;95:5-7. Sevelius J, Carrico A, Johnson M. Antiretroviral therapy adherence among transgender women. J Assoc Nurses AIDS Care 2010;21:256-64. Das M, Chu PL, Santos GM, et al. Decreases in Community Viral Load Are Accompanied by Reductions in New HIV Infections in San Francisco. PLoS One 2010;5:e11068.
  12. Access tends to be low for transgender women, especially those of color who are also dealing with issues of racism. Barriers to health care, cultural standards of beauty and “womanhood”, family rejection Access to gender affirmation: Access to support and affirmation from family, peers, society, and/or lovers and sex partners Ability to “pass” Access to gender-affirming health care Hormone use/access to hormones Need for gender affirmation: Desire to pass or live “stealth” Importance of passing Desire to be affirmed as female Intensified through objectified body consciousness and internalized transphobia
  13. NEED - ACCESS = UNMET need for affirmation, which is most likely to predict risk behavior (i.e. getting one’s needs met in risky ways and not engaging in appropriate self-care behavior).
  14. With K08 funding from NIH/NIMH, we analyzed qualitative data to develop a conceptual model that examines how unmet need for gender affirmation contributes to risk behavior and diminished self-care. The Model of Gender Affirmation integrates objectification theory, which has been primarily explored in the context of women’s body image and eating disorders research with the identity threat model of stigma from social psychology literature, and draws on Diaz’s research examining sexual risk as an outcome of social oppression. The Model of Gender Affirmation posits that in the context of transphobia, a high need for gender affirmation among transgender women, coupled with low access to gender affirmation, results in an unmet need for gender affirmation, which constitutes identity threat. Transwomen attempt to reduce identity threat (or meet their needs for gender affirmation) by seeking affirmation in contexts that can pose health risks and subsequently undervaluing important health seeking behaviors. Now writing up some quant data to support this model. Interventions: Social support: building community Empowerment: trans-pride, coping skills, health education Transition-related health care: hormones, surgery, mental health care Gender-affirming health care: access to providers who are transgender-affirming. Clearly there is a need to work with providers to get them trained to work with transgender people in a culturally appropriate way as well, in addition to social and structural level interventions.
  15. Reisner, S. L., White, J. M., Mayer, K. H., & Mimiaga, M. J. (2013). Sexual risk behaviors and psychosocial health concerns of female-to-male transgender men screening for STDs at an urban community health center. AIDS Care, 26(7), 857-864. doi: 10.1080/09540121.2013.855701 Sevelius, J. (2009). ‘‘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, 20(5), 398-410. doi: 10.1016/j.jana.2009.06.001
  16. Qualitative interviews (n=20), 5 focus groups (n=38) Cultivating facilitators Reducing barriers
  17. Transwomen are excluded from or underrepresented in PrEP demonstration projects and studies of barriers and facilitators to PrEP uptake, where they are often aggregated with MSM without consideration for their unique positions within sociocultural contexts.
  18. The iPrEx study included trans women in the trial, but did not disaggregate the data when reporting the results. A later subanalysis of the iPrEx data revealed zero efficacy among transwomen, likely due to adherence issues. Thus, we still are lacking data about PrEP acceptability among trans communities and how best to get PrEP to trans people who want it.
  19. PrEP use was not linked to behavioral indicators of HIV risk among trans women in iPrEx, while MSM at highest risk were more adherent.
  20. While knowledge of PrEP was low, interest was relatively high.
  21. PrEP forums in the community, identify PrEP champions Ideally PrEP would be offered by hormone providers Address confusion with PEP, concerns about toxicity, overall medical mistrust This study demonstrates the importance of the unique sociocultural context of trans women’s lives when considering how PrEP might best be marketed to them as an tool for HIV prevention. Implies a homogeneity that does not exist among MSM. Social and sexual networks are not the same. Thinking in behavioral terms only can lead us to ignore affiliation networks and communities that are important sources of information, norms and values, and provide resources for health promotion strategies.
  22. Interventions that address multiple co-occurring public health problems—including substance use, poor mental health, violence and victimization, discrimination, and economic hardship—should be developed and evaluated for transgender people. Discrimination and social stigma can hinder access to education, employment, and housing opportunities. In a study conducted in San Francisco, transgender people were more likely than MSM or heterosexual women to live in transient housing and be less educated. Discrimination and social stigma may help explain why transgender people who experience significant economic difficulties often pursue high-risk activities, including sex work, to meet their basic survival needs.
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  24. Piloted with 23 transwomen, currently gathering follow-up data Informed by the Models of Gender Affirmation and Health Care Empowerment
  25. Conduct your intakes and collect your data in trans-inclusive ways. Do not assume that you will always be able to “tell” whether someone is trans or not. Do not make assumptions about their identity. If you have a question about how someone prefers to be addressed, ask politely. Once you know, do not mess up a trans person’s name and pronouns. Do not ask them questions about being trans that are not relevant to the care you are providing. Do not assume that all of their problems stem from being trans. Do not assume that they are just like other trans people you have seen or known before.