1. Engaging House Ball
Communities Utilizing Culturally
Appropriate Methods
Third Thursdays Webinar
July 18, 2013
Hosted by Maria Sipin, SYPP Center
Stephaun E. Wallace, MS
Project Manager, Legacy Project
For audio:
Please dial 866-740-1260
pass code 3613106

2. Announcements
 Recording & slides
 Certificate of Participation
 Brief survey for a chance to
win a SYPP Center care
package
 Participate
 Ask questions
 Share comments
 E-mail us later

3. Engaging House Ball Communities Utilizing
Culturally Appropriate Methods
Stephaun E. Wallace, MS
Project Manager, Legacy Project
July 18, 2013

4. Overview
■ Legacy Project Mission/Background
■ What is the House/Ball Community?
■ Project VOGUE
■ National House Ball Coalition
■ Summary/Next Steps
■ Questions

5. LEGACY PROJECT

6. Legacy Project
Mission: The Legacy Project’s mission is to build trust and
collaboration among researchers, research institutions and
historically underrepresented communities most impacted by
the domestic HIV epidemic; to enhance cultural competence;
and to initiate scientific investigation to increase clinical
research participation.
Focus Areas:
■ Research
■ Capacity Building & Technical Assistance
■ Engagement & Collaboration

7. Legacy Project Overview
■ Formed in 2005 under the HIV Vaccine Trials
Network (HVTN) to raise the participation of Blacks
and Latinos in clinical trials in the U.S.
■ Expanded in 2008 to include all six networks, both
prevention and therapeutic, funded by the National
Institutes of Health (NIH)

8. The Expansion: HANC Legacy Project
NIAID HIV/AIDS Clinical Trials Networks
HIV/AIDS Network
Coordination (HANC) is a
project that works with
the six NIAID HIV/AIDS
Clinical Trials Networks
funded by NIAID with the
intent of creating a more
integrated, collaborative
and flexible research
structure.

9. HOUSE/BALL COMMUNITY

10. House/Ball Community Profile
■ Predominately African American and Latino YMSM, MSM and transgender
persons (male to female); emerging pockets of women/WSW and transgender
persons (female to male)
■ Ages 14-40; with a median age of 22
■ Increased risk for HIV
■ Ball events are held in major US Cities and parts of Canada; recent events in
Europe
■ More than 50 organized houses nationally
■ HIV prevention interventions have not specifically targeted this population
■ There isn’t a focused effort to increase education and awareness within the
House/ball community around HIV vaccine clinical trials or other biomedical
research
■ Kiki and WBT scenes emerging

11. The House/Ball Community
■ Social “Houses” are structured with heads of a house who are referred
to as the ‘Mother’ and ‘Father’, without regard to gender or age.
■ Most members of this population are between the ages of 14 and 29
years old, with its leaders, within the same age group or older.
■ Houses originated and have been in existence since the Harlem
Renaissance, and are modeled after a range of organizational structures
with membership either being through invitation or solicitation.
■ Houses are as diverse as the organization structures they model
– Fraternities
– Clubs
– Nuclear families
– Corporations

12. The House/Ball Community
■ Balls are celebrations of characteristics or talents that might otherwise go
unnoticed in the mainstream: an underground network that continues to
flourish, immortalizing its own "stars".
■ Ball (or Ballroom) participants consist of predominantly African American and
Latino gay social House members who gather at events where they compete in a
variety of categories (fashion, beauty, performance, etc.).
■ It’s estimated that most of the Ball participants are members of a “House”.
■ The event attendees are more diverse and include non-House members, non-gay
identified MSM, MSMW, and women.
■ Unfortunately, along with acceptance and building of self-esteem that comes
from the sense of belonging to a family, this sub-culture is greatly associated with
back-alley surgeries and silicone injections, prostitution, drug use, identity theft,
violence, depression, and sex in exchange for drugs or money.

13. The House/Ball Community
■ Primary and secondary prevention interventions tailored for young MSMs
continue to be needed to reduce both STD and HIV risk.
■ Utilization of the existing social network structures of “Houses” may be a viable
avenue to reach young MSM, their sexual partners, as well as non-House
members who may attend Ball events, but are a part of the social network that
extends beyond the sub-population.
■ Formative research of the networks that are created and facilitated via “House”
membership, affiliation, and/or events would aid in developing both primary and
secondary intervention options for young MSMs, and their network members.
■ Investigation of cross-country connections may reveal a “meta-structure” that
could serve as an avenue for interventions beyond individual and small group
level (e.g., community awareness campaigns, diffusion of innovation models).

14. PROJECT VOGUE

15. THE WNY House/Ball Community
■ Little is known of the specific social network structure of “Houses” outside of
New York City and other major metropolitan areas.
■ Even less is known of the Houses in Western New York and its near-by rural
communities.
■ However, the hierarchies of respect and the relatively stable structure of Houses
present a unique point at which we might engage this population with HIV
prevention interventions for young MSM of color.
■ This sub-population of young MSM of color are also frequently found to have
high STD and HIV prevalence.
■ Our need to fully comprehend environmental and social factors that influence
the growing “House” familial structure in Western New York is therefore the focus
of the proposed investigation.

16. Project VOGUE
■ Project VOGUE will offer group level intervention to counter the threat of HIV/AIDS
infection among the House community in Western NY and raise awareness about HIV
vaccine research.
■ Specifically targeting transgender and young men who have sex with men (YMSM) of color.
■ The intervention will take place as a series of workshops that will educate members of the
House population about a range of health, behavioral and socioeconomic issues, with the
ultimate goal of providing effective harm-reduction strategies to help individuals protect
themselves against HIV/STD infection and further spread of the disease and raise
awareness about HIV vaccine research.
■ The project will be multi-leveled and conducted in three phases.
■ The programs developed through this project will be informed by community based
participatory research techniques, culturally appropriate and specifically designed for use
with African-American and Latino MSM as well as transgender persons.
■ The project has been officially named Project VOGUE and there is one overarching goal for
this project and three specific aims:

17. Project VOGUE
■ The overarching goal of this pilot project is to increase the participation of MSM
of color (African-American and Latino) in HVTN clinical trials.
■ The specific aims of this project are:
Aim #1: To conduct a HIV/AIDS and HIV vaccine research awareness needs
assessment among members/affiliates of the house ball community.
Aim #2: To develop and implement a group level workshop intervention to
counter the threat of HIV/AIDS and raise awareness about HIV vaccine
research among those in the house ball community.
Aim #3: To assess the applicability of a potential model to reach and increase
the inclusion of highly at risk sub-populations of MSM of color (Members of
the House/Ball community) in HIV vaccine trial research initiatives.

18. Project VOGUE
■ Output for Aim #1:
A completed needs assessment document focused on members of the house ball
community articulating their HIV/AIDS and HIV vaccine trial awareness needs.
■ Activities related to accomplishing Aim #1:
1. Conduct face to face qualitative interviews with MSM of color key
informants representative of the house ball community.
2. Conduct focus groups with MSM of color key informants representative of
the house ball community.
3. Develop and tailor the necessary research instruments (Demographic
questionnaire, HIV knowledge questionnaire, Knowledge Attitude Behavior
Survey, Semi-structured interview guide, and the HIV Vaccine Trial Attitudes
and Beliefs Survey) that will collect key variables of interest related to this
project, specifically uncovering the social determinates that lead to HIV
acquisition or perpetuate continued mistrust of clinical trials vaccine
research.

19. Project VOGUE
■ Output for Aim #2:
A completed manual of the group level sessions developed and
implemented to counter the threat of HIV/AIDS and raise the
awareness of HIV vaccine research for those in the house ball
community.
■ Activities related to accomplishing Aim #2:
1. Implement the recruitment plan for the study to reach the target numbers
of key informants needed to conduct the study.
2. Conduct and analyze data from the face to face interviews focus groups
and group observations.
3. Generate HIV/AIDS and HIV vaccine trial topics for inclusion in the group
level sessions.
4. Convene monthly meetings of the House of Council advisory group.

20. Project Vogue
■ Output for Aim #3:
A completed evaluation report focused on the outcomes and applicability of the
model project developed to increase the inclusion of house ball community
members in HIV vaccine trial research initiatives.
■ Activities related to accomplishing Aim #3:
1. Develop an evaluation plan that will include a system to track all of the
research activities of this pilot project.
2. Submit, obtain, and maintain institutional review board approval for all
research related activities of this project.
3. Conduct data analysis at various points throughout the study as appropriate
using the approved techniques and approaches as planned.

21. What is Project VOGUE?
VOGUE Intervention
■ 6 session HIV prevention
intervention
■ Reduce stigma about clinical
research
■ Increase relationships between
house/ball & HVTU site
The combination of these two (2) separate, yet
interconnected components comprise Project
VOGUE.
WNY Council of Houses
■ Serves as governance body
■ Provides ongoing peer support
■ Provides feedback to HVTU and
research teams
■ Plans engagement programs/event

22. VOGUE Intervention Curriculum
■ Session 1
 What does it mean to be a part of the house/ball community?
■ Session 2
 Crafting an Agenda of Emotional Safety
■ Session 3
 HIV/STI 101
■ Session 4
 Understanding HIV Vaccine Research
■ Session 5
 Presentations (Community Change Projects)
■ Session 6
 Optional Clinical Site Field Trip & Graduation

23. Council of Houses (COH)
■ Composed of various houses:
– Akachi, Anyae, Balenciaga, Blahnik, Boyette,
Dereon, Diamany, Doll, Dynastii, Ebony, Empire,
Evisu, Infiniti, Khan, Labella Mafia, Legacy, Marc
Jacobs, Maserati, Mizrahi, Ninja, Ovahness,
Paciotti, Playboy-Bunny, Prodigy, Revlon, Talon,
Warriors

24. COH Leader Profile
Age Gender Sexual
Orientation
HIV Status Marital Status Race
M = 25.8
< 25 = 10 (67%)
> 25 = 5 (33%)
Male = 11 (73%)
Female= 2 (13%)
Trans = 2 (13%)
Homo = 13 (87%)
Bi = 2 (13%)
Neg = 12 (80%)
Pos = 3 (20%)
Single = 10 (67%)
Married = 1 (.06%)
Partner = 4 (27%)
AA = 12 (80%)
Latino = 2 (13%)
Other = 1 (.06%)

25. COH Functions
■ Advisory expert panel for Project VOGUE
■ Met 1 – 2 Times a month
■ Compensation: $25 Walmart Gift card/meeting
– Food during the meetings
■ Conduct other business on behalf of house ball
community
– Plan Balls, Resolve conflicts, Educational programming

27. Some Project VOGUE Conclusions
• CBPR research principles proved effective in working with the COH
and house ball community
• A new 6-session curriculum was developed that the community is
invested in
• Engaging the COH from the beginning was pivotal in getting buy-in
and building trust among the target population
• Supporting the COH social networking activities fostered further
collaboration
• Collaborative partnerships between researchers, community-
based organizations and at-risk MSM populations should be
established and strongly encouraged

28. Research Team
■ The team will be comprised of a very experienced interdisciplinary collaborative research
team from the University of Rochester (Medical Center and School of Nursing) and the
MOCHA Center, Inc.
Principal Investigator
Michael C. Keefer MD, Professor of Medicine, Director of CRS, University of Rochester
Medical Center
Co-Principal Investigator
Sheldon D. Fields PhD, RN, FNP-BC, AACRN, FNAP, FAANP, Associate Professor of
Nursing, University of Rochester – School of Nursing
Damon L. Humes MHS, Executive Director, The MOCHA Center, Inc.
Project Director/Co-Investigator
Stephaun E. Wallace, MS, MOL, Director of Programs, Research and Evaluation, The
MOCHA Center, Inc.
Sub-investigator
Catherine A. Bunce RN, MS, CCRC, CRS Clinic Coordinator, University of Rochester
Medical Center

29. NATIONAL HOUSE BALL
COALITION

30. Legacy Project’s Long Term Goal: Impact How
HIV Clinical Research is Conducted
■ Community Engagement
■ Science that identifies impact of historic disparities
on research
■ Increased cultural responsiveness to target
populations
■ Improve scientific literacy in the most impacted
communities
■ Informed communities

31. Improvements the HIV Scientific Research
Community Needs to Make
 Translate clinical research process & science to communities
 Relate to human beings and the complexities of their everyday lives
 Build trust with communities to overcome past historical abuses
 Engage underrepresented yet disproportionately impacted communities
in research
 Involve community members in every aspect of planning, outreach and
data analysis of research studies
 “Helicopter Effect”/”Booty Call Effect”: Invest in communities for the
long term; rethink & challenge how research studies are funded

32. House/Ball Community Change Consultation
Planning & Collaboration:
– Formed an Advisory Group comprised of subject matter experts and
leaders from the HBC to guide agenda development and evaluation
– Collaborated with Marne Castillo from the Adolescent’s Trial and
Medicine Network (ATN) to gather behavioral data and characteristics of
the HBC
– The Advisory Group informed and developed:
■ Demographic survey
■ Interview guides for focus group
■ Invitee list

33. House/Ball Community Change Consultation
Overall Meeting Goal
To convene a national meeting of key influencers from the House Ball
community in order to formulate a national HIV clinical trials research agenda
specifically focused on the House Ball community.
Discussion Themes:
■ Barriers and Facilitators for Engaging the HBC in HIV Clinical Research
■ Emerging and Ongoing HIV Clinical Research Trends (in particular the
activities of the Adolescents Trial Network (ATN))
■ Short-, Medium- and Long-term Strategies for Engagement
■ Building a National House/Ball Coalition

34. House/Ball Community Change Consultation
■ April 27-29, 2012 in Washington, DC
■ 31 participants of various social statuses and scenes from
the national House and Ball community, (including one
member from Toronto)
■ Participants filled out surveys that asked about demographic
characteristics of individuals and their houses, and also
knowledge attitudes and beliefs about HIV clinical research
■ Participants were separated into focus groups to discuss
short-, medium- and long-term strategies for engaging the
HBC in HIV clinical research

35. Participant Demographics
■ Average age: 34.9 years
■ Average # Years in HBC: 14.7
■ Most were male (74%), African American/Black
(97%), gay-identified (64%), single (51%), employed
full time (84%), and an income over $35,000 per
year (71%)

36. Participant Demographics
9.7
35.5
6.5
29
12.9
6.5
Education
High School Diploma
or GED
Some College
Associates Degree
4 Year College Degree
Master's Degree
Doctorate/Medical/La
w Degree

37. Awareness of HIV Clinical Modalities and Trials
Clin. Res Vaccine Vaccine Trial HIV Txt HIV Txt Trial PrEP PrEP Trial Microb. Microb. Trial
Ever Read or Heard about...
Percent(%)Agree
020406080100
65.5
89.7
72.4
79.3
58.6
75.9
55.2
46.4
28.6

38. General attitudes about ethics, health, utility, and
acceptability of trials

39. Attitudes and Awareness
Vaccine Attitudes PrEP Attitudes Microbicide Attitudes Medication
Attitudes
Aware of Modality
No 3.6 2.7 3.0 1.7
Yes 3.5 3.2 3.3 2.0
p-value 0.87 0.14 0.31 0.24
Aware of Trials
No 3.7 2.8 3.0 1.8
Yes 3.5 3.3 3.4 2.1
p-value 0.35 0.05 0.05 0.17

40. Barriers for Engaging the HBC in HIV Clinical
Research
■ Lack of access to info about clinical research
■ Helicopter Effect: short time frame; researchers popping in and out
■ Distrust: historical trauma; fear of medical community; negative impressions
of research
■ Access to health care: cultural, economic, social
■ Myths
■ Lack of reciprocity: Fearful of participating and not receiving benefit from
research (not financial/employment benefit, but personal and community
benefit)
■ Uncertainty: screening & exclusion, side effects
■ Lack of leadership participation
■ Miscategorization of gender
■ Stigma

41. Facilitators for Engaging the HBC in HIV Clinical
Research
■ Attend house/alliance/federation meetings & balls
■ Reciprocity: benefit is clear; results shared, practices transparent; research
team accountable
■ Whole community engagement: within the HBC--leaders, linkers,
gatekeepers
■ Access to culturally competent research staff: cultural competency with HBC,
sexual/racial/ethnic diverse staff
■ Longer time frames
■ CBO bridge
■ Community Empowerment: HBC members feel ownership over the research
process and outcome; capacity building
■ Simple language
■ Sex and gender positive practices

42. NEXT STEPS

43. Next Steps
■ Project VOGUE
– Continue Abstracts
– Publication Submission
– Soliciting Funding for Continued Diffusion
■ National House Ball Coalition
– Coalition Development
– Work Plan and Program Implementation
– Monitoring and Evaluation
– Continue Abstracts
– Publication Submission
■ USCA Conference Seminar:
– Examining Effective Engagement Strategies to Reach MSM of Color
– Wednesday, September 11, 8:30 am - 11:30 am

44. Legacy Project Initiatives & Programs
■ Native American Engagement in Clinical Research- A joint
project with NNAAPC
■ Legacy Expanded Testing Initiative
■ Historical Black Colleges and Universities Collaboration
■ House/Ball National Coalition
■ National Community Consultation Series
■ Creating Awareness Through Art
■ Be The Generation Bridge- increase understanding and
support for biomedical HIV prevention research

45. Advisory Committees & Working Groups
■ Legacy Project Advisory Group
■ Women’s HIV Research Collaborative
■ House/Ball National Coalition
■ Creating Awareness Through Art Advisory Committee
■ Legacy Project Working Group
– Membership (subcommittee)
– Research/Evaluation (subcommittee)
– Engagement/Collaboration (subcommittee)
– Capacity Building/Technical Assistance (subcommittee)

46. Thank you!
■ Project VOGUE Research Team
■ National House Ball Coalition Research Team
■ WNY Ballroom Community
■ MOCHA Center & Rochester Victory Alliance
■ HVTN Staff
■ REACH LA Staff
■ Legacy Project Staff
■ SYPP Center/CHLA Staff

47. Q&A / Discussion

48. Contact Information
Stephaun E. Wallace, MS
Project Manager, Legacy Project
stephaun.elite@gmail.com
678-913-8629
Maria Sipin
SYPP Center
Children’s Hospital Los Angeles
323-361-4765
msipin@chla.usc.edu
www.chla.org/sypp

49. Upcoming Webinar:
August 15th (11 am - 12 pm PT)
The Impact of HIV Criminalization Laws
on Young People
Laurel Sprague, Ph.Dc
The Sero Project
The Global Network of People Living with HIV/AIDS,
North America