This document discusses the invisibility and marginalization of Black men who have sex with men (MSM) within the context of HIV/AIDS research and care. It highlights disparities in representation, access to healthcare, and the need for more inclusive studies to address the unique challenges faced by Black MSM. The author emphasizes the importance of recognizing and integrating social and clinical services to improve health outcomes and visibility for this population.

1. Invisible Men who have Sex with Men and Survival: From Practice to Research and Back Again
Sex in the City II: Men, Sex, Love and HIV
September 25, 2014
John Schneider MD, MPH
Associate Professor
Departments of Medicine and Public Health Sciences
http://hivelimination.uchicago.edu/

2. Disclosure
•Research support from NIH, CDC, University of Chicago
•Views and opinions discussed here are not necessarily views and opinions of the University of Chicago
•My patients teach me everything I know

3. Laguna Honda Hospital (long-term care facility), San Francisco - 1994

4. Laguna Honda Hospital (long-term care facility), San Francisco - 1994
R.W. is a 33 year old Black gay man with AIDS
CMV retinitis left him blind
Permanent resident
During 2 years of volunteering, he was the only Black MSM I encountered.
Where are Black MSM?

5. Documentaries on HIV and men who have sex with men (MSM)
And the Band Played On
How to Survive a Plague
We were Here
Normal Heart
Where are Black MSM?

6. “Patient Zero”
Am J Med. 1984
“The first five patients were white, the next two were black. The sixth patient was a Haitian man. The 7th patient was a gay African-American man, here in Los Angeles.” Gottlieb, MMWR 1981

7. Where are Black MSM?
•Invisible
•Classified as heterosexual
•Meeting and dying in public spaces
•Diagnosed with “sudden death”, “recurrent pneumonia of unclear origin”, “cancer”, “drug overdose”, “gun-shot wounds”, “motor vehicle accident”
•Alone – “Time on Two Crosses”
•Dominant storyline of a white gay disease was the focus

8. Fenway Health Center, Boston - 1998

9. Fenway Health Center, Boston - 1998
Study of adherence to antiretrovirals among HIV+ persons – mostly MSM
15% of the study participants were Black
–This is in the context of 25% of population as Black in Boston and 10x infection rates among Blacks in Boston
Why aren’t Black MSM represented in the scientific literature?
Where are the Black MSM?
Schneider, JGIM, 2001

10. “Racial issues (see Ethnic issues)” [African American or Black not indexed]
“Some people with same gendered relationships, particularly from racial ethnic minority communities self-identify as heterosexual.” Page 16 Fenway guide
“Some racial or ethnic minority men view gay culture and identity as white, Western and classist, and they do not feel welcome in the LGBT community.” Page 16 Fenway guide
Is Black a part of the rainbow?
–“Rainbows really are just refracted white light” Aaron Talley 2014

11. Case examples
•Organizations with a primary LGBT focus
•Fenway Guide
•Straight gay alliances
•National LGBTI conferences
•Institutions of Higher Education

12. Working within a Straight Gay Alliance for antidiscrimination of LGBT persons in the schools
“When a particular marginalized identity is selected as the one to address, when that identity is the rationale both for the organization’s existence and institutionalization, how does that the selection itself instantiate the marginalization of others?”
“Rhetorical arguments of unprofessionalism and inappropriateness easily elide racisms, maintaining the primacy of the hierarchic structures of organizations and render antiracist work secondary to queer activism because charges of racism must be stated decorously and proven by proper channels.”
Ashton Crawley 2012

13. “I am Black before I am Gay”
UConnect
First population based study of Black MSM
Largest sample of BMSM from a single site:
(BMSM 16-29 years old – n=627)
Self-Identification – sexual orientation
59% gay; 26% bisexual; 25% same gender loving; 24% homosexual;
14% sexual; 8% straight; 7% questioning; 6% queer; 2% heterosexual
Communities
22% very close to gay community
46% very close to black community
37% most people in neighborhood (South Side) know I have sex with men
68% do not go to another neighborhood to express sexuality or to be accepted

14. University of Chicago Medical Center - 2001

15. University of Chicago Medical Center - 2001
20 y/o young Black gay male presents with rash. No fever.
Diagnosed with acute HIV and syphilis.
No drug use
Never linked to HIV prevention program
“But doc, this was the first guy I ever had sex with.”

16. Disparities Paradigms
Why do BMSM have higher rates of HIV than WMSM?
“Our results provide key evidence that the plurality of HIV-related disparities in US black MSM relative to other MSM are disparities in HIV clinical care access and use, structural issues (eg, low income, unemployment, incarceration, low education), and sex partner characteristics, rather than disparities in sexual and substance-use risk behaviours.” (Millet, Lancet 2012)
Since 1980 Only 76 interventions focuses on racial minority populations in clinical settings and of those 1 focuses on BMSM
(Hemmige, JGIM 2012)
New studies that make conclusions about BMSM with white as the reference group needs to stop. Studies need to focus on Black MSM and the considerable heterogeneity within the community

17. Shah, ABE 2014

18. Chicago Black MSM ASOs – 2008- 2010

19. Figure 1. Two-mode affiliation network of health center utilization in Chicago, Illinois.
Figure 1 Square nodes represent health centers and small circular nodes represent
participants. Colors indicate factions (HHCs sharing same participants); and size of
nodes reflect degree centrality (number of HHC nominations received). Affiliations
are represented by grey edges, which connect participants with utilized health
centers. Referring to Table 2, nodes C, E, and H (in blue) represent north side health
centers and are located within the same faction according to the faction analysis. The
triangle encompasses these health centers from the same faction. Meanwhile Nodes
A and B represent health centers on the west side and are located within the same
faction, in addition to health center on the south side represented by node D. Nodes
F, G, and J represent health centers on the south side and comprise the remaining
two factions. This suggests that BMSM affiliate with health centers based upon a
geographical distribution.
Schneider, STD 2012
HIV infected network only

20. Some Chicago Black MSM ASOs – 2008-2010
•Structural violence
–Limited resources
–Rapid staff turnover
•Equal Partnerships with resourced venues are limited
•Staff
–Susceptible to violence and lack of payment for services

21. Access Grand Boulevard Clinic FQHC, Chicago – 2008

22. Anal Cancer epidemic?
Patient RW
•31 y/o HIV+ Black MSM, sexually abused as a teenager
•Presents for care 2008, CD4 210
•Bulky warts
•Biopsy negative for anal cancer
•HIV poorly controlled
•Dropping CD4, peri-rectal abscesses, multiple hospitalizations
•Dies June 2012 with extensive anal cancer
Patient EJ
•56 y/o HIV+ Black man who has sex with men
•Transfers care 2009, with CD4 560
•HIV well controlled
•Anal itching and bleeding, hard lesion on exam, biopsy reveals invasive anal cancer
•Massive blood clot to lungs, dies August 2012

23. Background
•Anal cancer disproportionately impacts HIV positive MSM:
–131 per 100,000 for HIV-infected MSM
–46 per 100,000 for HIV-infected heterosexual men
–30 per 100,000 in HIV-infected women (Silverberg 2012)

24. Anal cancer in the U.S.
US 2012
Women- 3,980 new cases and 480 deaths
Men- 2,250 new cases and 300 deaths
Age-adjusted incidence rate
American Cancer Society: www.cancer.org

25. Asstigma!
•UConnect – Only 25% of YBMSM in Chicago have ever had any type of anal exam with testing
•Why?
•Embarrassment, time pressures, lack of training, disimpaction

26. Anal pap smear or Rectal STI testing
•Moisten Dacron or other polyester swab
•Insert into rectum
•On withdrawal, circular anal wall pressure
•ThinPrep
•Digital Rectal Exam (DRE)
•Advantage, no anoscope/speculum required!

27. Percent of White MSM with anal HPV infection
Palefsky, JID 1998

28. Where are the Black MSM?
•Through 2013, we identified 521 studies of MSM, and anal pathology
–Only 2 domestic studies which reported >40% of sample Black MSM.
–Higher rates of anal pathology among BMSM in both studies. Higher rates with younger sample.
•Implications for screening and vaccine development
–Compared to White women, Black women had lower rates of HPV 16 and 18 in advanced CIN lesion; but more HPV 31, 35, 45, 56, 58, 66, and 68, all of which are linked to cervical cancer (Vidal, ACRR 2013)
Walsh, AJPH In Press

29. NAESM 2011
•“I can’t cross the Bay Bridge every time to take part in a study”
NAESM audience member responding to the assertion that people from Oakland can participate in rectal microbicide feasibility trials taking place in San Francisco

30. Chicago PrEP 2012

31. Case*
•Maurice 21 y/o, moved from Georgia in 2011, lives with sister on the South Side, no criminal record. Unemployed and wanted a better “night- life”.
•First visited clinic with Casey, his 20 year old sex partner (and work partner and drug-using partner). Casey was newly infected with syphilis; Maurice syphilis and HIV negative
•Casey and Maurice missing; find out that both convicted for breaking and entering, Maurice gets 90 days; Casey was on probation and gets 6 months
•Once out, Maurice ramps up sex work; back and forth with me trying to decide about PrEP initiation – finally decides to initiate, HIV antibody negative, but HIV viral load is 120,000 indicating acute infection
•I start him on ARV therapy, and 3 weeks later he is caught stealing $12 belt from Target, fell into older man during altercation with security guard – charged with assault, now at Cermak awaiting trial for 4 months – rectal gonorrhea while there. Will likely be out in 5 months.
*Identities protected

32. Chicago PrEP - 2012
NIH supported 2500 MSM/transwomen in iPREX study of PrEP efficacy. Only domestic sites are Boston and San Francisco
–Only 8% of participants were Black (Grant, NEJM 2010)
Where are Black MSM?
Only 40% of Black MSM (16-29 years old) in Chicago have heard of PrEP; 5% of BMSM have been on PrEP ever

33. Reconceptualizing PrEP
•Older clients are being prescribed PrEP (37 years)
•PrEP clients in most regions of country tend to be women
•PrEP clients tend to live in areas where public aid is not available
•PrEP clients are more likely to be privately insured
(Gilead data 2013-2014)
Significant structural problems that make PrEP challenging (“Maurice”); the thought that a biomedical solution will be embraced or effective is problematic

34. Pleasure Passion and…. PrEP?
Most studies of Black sexuality is in the context of HIV, STDs and unplanned/unwanted pregnancy
Black male sexuality is managed and policed by contemporary social structures, for example, heterosexism, sexism, [medicalization] white supremacy and capitalism – Herukhuti
Black men loving black men is a revolutionary act – Joseph Beam
How can PrEP be part of this conversation?

35. Shah, ABE 2014

36. Take Home
•Invisible MSM need to be seen, appreciated and respected as Black MSM
•Black MSM research is complicated
–Limited inclusivity and limited participation
–Need more research training, pipeline programs for Black students, mentorship and cultivation of Black people, provision of opportunities and community engagement
•Clinical services integrated with social services and implementation research
–We have the tools for HIV elimination
•Maximization of ACA while we have it
•“The challenge is to retrofit our emotional infrastructures to be as resilient in response to the heat of our emotional connections and intimacy as our bodies have been to the heat of our physical connections and intimacy” - Herukhuti

37. Thank-you
Patients
Research Participants
CCHE Students and Staff
Funders
http://hivelimination.uchicago.edu https://www.facebook.com/hivelimination @HIVElimination