Nothing Without Us: HIV and Social Justice
The 13th Annual Women as the Face of AIDS Summit
May 7, 2018
Bethel Gospel Assembly
2-26 East 120th Street, New York City
7:45 AM Continental Breakfast
8:30 AM Opening Remarks
Ingrid Floyd, Executive Director, Iris House
8:45 AM Update on Women, Girls and HIV
Oni Blackstock, MD, MHS, Assistant Commissioner, Bureau of HIV/AIDS Prevention and Control, New York City Department of Health and Mental Hygiene
9:30 AM History, Trauma and Health in the African-American Community
Joy DeGruy, PhD, researcher and educator, author of "Post Traumatic Slave Syndrome"
11:15 AM Breakout Sessions
Advocacy is Life: Amplifying Peer Voices in the HIV/AIDS Community
Ray Lowe, Peer Expert, Yonce Jones, Peer Expert, Krupa Hart, Doctoral Candidate, MBA, and Elizabeth Furth, Program Evaluator, Harlem United
Empowering disenfranchised communities such as PLWHA to become advocates themselves to make sure their voices are heard instead of staff, policymakers, or lobbyists is an extremely powerful skill. Harlem United is in the second half of a four year grant to engage and train peers on how to become advocates and decrease internalized stigma around HIV/AIDS. The peers on the panel will speak to the influence the program has had on their personal beliefs around politics, healthcare and stigma. The audience should get a feel for the passion the peers have for the program and how they have become peer-advocates, as well as the benefits the peers have seen as a result of being in the peer training program. The audience will also gain an understanding in how HU created a peer-lead peer-training/advocacy program, and ways they can replicate it on their own.
From Patient to Professional: The Challenges and Advantages of Hiring
from Within to End the Epidemic
April Watkins-Griffin , Senior Director of Workforce Development, GMHC
At GMHC, many staff members belong to the communities the agency serves and may have shared experiences with our clients. This session will explore the impacts of having individuals from a given population work as caregivers to that same population. The workshop will review the potential advantages and challenges of working with clients who potentially share some of your own personal difficulties. Participants will learn practical skills for identifying and addressing challenges, and build self-care skills.
From Stigma to Empowerment: HIV Disclosure in 2018
Terri L. Wilder, MSW, Director, HIV/AIDS Education and Training, Serina Yancey, supportive peer, Mt Sinai Institute for Advanced Medicine
For decades, HIV-related stigma has impacted the lives of persons living with HIV in negative ways. While stigma still exists, people with HIV are publicly disclosing their HIV status as a strategy to reduce stigma. In South Africa, people with HIV proudly wear t-shirts with “HIV POSITIVE” in bold letters, sending a message that people with HIV should not be ashamed. While parts of the world combat HIV stigma in creative ways, there are still opportunities to demand that people with HIV be treated with respect and supported to live as empowered members of the community. Because stigma can impact a person’s decision to disclose their HIV status, one must carefully think about the “who, what, why, when, and how” of disclosure. Additionally, finding ways to constructively anticipate and react to stigma
and rejection during disclosure can support both mental and physical health. By focusing on the positive and empowering aspects of HIV disclosure, people with HIV can equip themselves to successfully disclose their status and minimize the possibility of a stigmatizing experience. This will ideally contribute to a cultural shift in the public perception of people living with HIV, and ultimately move the act of disclosing from a negative to a positive life event.
It’s a Woman’s World
Shirley Bejarano MPH, MS Director of Education and Prevention, AIDS Center of Queens County and
Lori Mizuno MPA, Senior Director of Global Advocacy Operations at AIDS Healthcare Foundation
The purpose of this session is to have an interactive discussion about the past, present, and future efforts regarding lessons learned throughout the journey of HIV advocacy, civil rights, and women’s movement. We anticipate a fruitful discussion where we can explore next steps that tie global and local efforts and draw parallels between domestic and global HIV prevention efforts that address social determinants and systemic factors affecting women and girls world-wide. In many ways, there are parallels between domestic HIV prevention work and global prevention work addressing women and girls. Social norms, economic oppression, and cultural issues can further complicate preventing HIV among women. In many countries, addressing HIV prevention in young girls and women is paramount, as they encounter risks at a younger age.
Leave No Woman Behind: Addressing Disparities in HIV-related Health Outcomes
among Women of Color
Ashley Azor, MPH, Project Coordinator, Kristecia Estem, MPH, Buprenorphine Technical Assistance Consultant, Sahani Chandraratna, MPH, MSW, Quality Management Specialist, Bisrat Abraham, MD,MPH,Director of Clin OPs and Provider Communications, and Jennifer Carmona, MPH, Director of Quality Management, HIV/AIDS Care & Treatment Program, The New York City Department of Health and Mental Hygiene.
In the United States, decreases in HIV/AIDS-related mortality and morbidity have followed advances in highly active antiretroviral therapy (HAART). However, stark racial, ethnic, and gender disparities remain in new HIV cases and HIV-related health outcomes. Nationally, in 2009, HIV was the 4th leading cause of death for Black women aged 25 to 44. In contrast, HIV was the 15th leading cause of death among White women of the same age range in the same year. Additionally, Black women represented the largest proportion (61%) of new HIV diagnoses among women, with a rate of diagnosis 16 times higher than that of White women and almost 5 times that of Latinx women. During this session, we will engage participants to explore barriers to achieving optimal HIV- health outcomes among WOC with HIV, identify existing resources and gaps in services, and brainstorm actionable solutions that can be implemented across the NYC Ryan White Part A and Clinical Operations portfolio. Participants will break into issue-based learning groups to address: socioeconomic, behavioral, historical, contextual, and other factors associated with disparities in HIV outcomes. Groups will also be given the opportunity to share experiences, ideas, and strategies to improve care and treatment outcomes for WOC.
Risk, Relevance and Role – Connecting the Dots to Support Cis and Trans Women Living with HIV
Octavia Y. Lewis, Positively Trans & PWN-USA; Vanessa Johnson, J.D., Red Ribbon Consulting; and Diana Lemos,
AIDS Foundation of Chicago; panel moderated by Amelia Korangy, ViiV Healthcare
We are at a tipping point. We have made incredible strides in reducing the number of new infections among women– a 40% decline in the past decade. We have improved tools for prevention pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), treatment, and care, and there are many new tools on the horizon. At the same time, there are threats to this progress. This Risk, Relevance and Role workshop is designed to focus on shifting muddled messages around women’s risk, using local data to better collaborate, and ways to bring in family and friends to break down stigma and make care real for women of color. We will tackle topics including: How does how we communicate “risk” impact HIV prevention, treatment, and care for women? How can we use the current epidemiologic data to better collaborate and improve care for women? How can organizations and providers support HIV discussion or disclosure?
12:30 PM Luncheon Celebration Honoring Women in the Fight Against HIV
1:45 PM Breakout Sessions
Now and Then: An Intergenerational Conversation about HIV
Rev. Antionettea Etienne, Health Educator and Activist, Veronica Karp, Health Educator, and Stephanie Vasquez, Activist, Iris House; Nancy Duncan, HIV Activist
The purpose of this panel, comprised of HIV+ women from three different generations, is to have an intergenerational discussion about HIV/AIDS. Panelists will discuss the ways in which they have seen the epidemic and HIV movement change over the years, with a focus on how we can use what we have experienced and learned in the past to overcome the barriers and challenges we encounter today. Panelists will also consider how the older and younger generation can learn from one another and collaborate to fight the epidemic today.
Building Your HIV Tool Box for Women Living With HIV
Krista Martel, Executive Director, The Well Project
This session will highlight The Well Project’s resources, including a library of 110+ fact sheets, slide sets, and webinars, and describe how they can be used to build leadership skills among women living with HIV. This session will provide insights into how these resources --and others--can help build personal HIV knowledge across a wide range of medical and cultural subjects, including prevention, treatment, self-care, mental health, and other women’s health issues. We will then lead a discussion about how these resources can also help women living with HIV expand their skills to educate and advocate for others, providing insights into different levels of advocacy and how to engage in self care during those efforts. As part of the discussion about broader advocacy efforts, we will describe how women living with HIV can leverage social media to increase their advocacy and community building and the role that existing resources can play in those efforts.
Organizing for Justice Through Storytelling
Kaleb Oliver Dornheim, Advocacy Specialist and Cecilia Gentili, Policy Director at GMHC
This workshop is grounded in educating individuals on how to organize themselves and others around a sexual and reproductive justice (SRJ) campaign. Participants will learn how to employ storytelling in creating a successful campaign to create change in their client’s communities, regardless of gender/bodies. Participants will also hear how this framework was employed recently at GMHC with their clients, targeting some of NYC’s most vulnerable communities, such as Transgender and Gender Nonconforming people, Latinx people and immigrants, and people living with HIV/AIDS. Participants will have learned about GMHC’s Policy department putting together a series of workshops grounded in storytelling and Sexual and Reproductive Justice (SRJ) in 2017 through 2018, and how we’ve had great results in client engagement, outreach, and Giving our clients a way to articulate and advocate their needs in regard to healthcare access, sexual health education and reproductive rights for themselves and their communities. They will also have completed an activity where they work on designing their own campaign and learn how to put stories together to have the widest scope and effect during outreach and education.
Project SUCCEED: HIV Undetectable, Hep C Cured!
Kizzi Belfone, MPH, HIV/HCV Surveillance and Evaluation Analyst, Alexis Brenes, Health Care Access Specialist, MaNtsetse Kgama, MPH, Project Manager, Natalie Octave, MPH,CHES, Project Coordinator
NYC Department of Health and Mental Hygiene
Project SUCCEED is the New York City (NYC) Department of Health’s capacity building effort that prepares HIV clinical and non-clinical providers to offer hepatitis C (HCV) screening, treatment, and navigation services to people living with HIV/AIDS (PLWHA) in NYC, with a special emphasis on people of color and formerly incarcerated individuals. The goal of this presentation is to encourage HIV clinical and non-clinical providers to integrate HCV services into care and treatment for their HIV-positive patients and clients. Addressing HCV is critical to the care and treatment of people living with PLWHA. HCV coinfection triples the risk of developing liver related diseases and death for PLWHA(1) . Curing HCV in PLWHA will help prevent liver disease and improve quality of life for co-infected people.
Standing Up to Stigma: Taking Action to Drive Change
Pernessa C. Seele, PhD, Founder and CEO Balm in Gilead, Inc.
This program offer attendees an overview of Dr. Seele’s work to educate and inform individuals, communities, members of the faith-based community and public health officials about the stigmas associated with AIDS. Included in the discussion is a five-step approach to practical stigma management:
1. Expose the problems. Those facing stigma must come forth; 2. Educate. Most discrimination stems from ignorance or a lack of knowledge; 3. Change the language. Those perpetuating stigmas need to be more conscious of what they say and how they negatively affect people; 4. Improve media coverage. Too often, media sources perpetuate stigma and need to become more sensitive about how it uses language and image; and 5. Become an example. Everyone needs to treat people correctly and stand up for those who are being discriminated against.
Women and PrEP
Johanna Acosta, M.PH, PrEP Specialist and Maria Cardenas-Hernandez, PrEP Specialist, Westchester Medical Center
This session will explore why PrEP important for women and the significant racial/ethnic disparities in HIV infections among women. We will go over newly diagnosed HIV cases, by gender and race in NYS. Included will be a discussion on certain populations of women that continue to have high levels of infections and how Transwomen of color are disproportionately represented among newly diagnosed transwomen. Participants will leave understanding how PrEP can empower women to achieve their sexual health goals and have pleasurable sex lives.
3:00 PM Breakout Sessions
Black Girls Matter
Keturah Clark, Community Health Specialist; Mechell Williams, Peer Navigator, Trillium Health
Black Girls Matter (BGM) workshops offer a holistic approach to health education by helping young women understand the significance that self-awareness (mental, physical and emotional) has on long term health disparities prevalent in their communities. As a result of Black Girls Matter. Trillium’s Women Prevention Program has found that support groups and educational workshops are extremely effective in promoting reproductive health as well as identifying and addressing social determinants of health. Biweekly and monthly sessions have proven effective in making women consciously aware of issues affecting their health and ways to address those issues. As BGM continues to grow, we intend to discuss with the group ways to advocate for global change, as women around the world experience health disparities. This presentation will provide information on the BGM curriculum and the successes that Trillium Health has had reaching this population. By expanding our Black Girls Matter communities, we can fight the epidemic as one.
Sexual Risk Behaviors and Partnership Characteristics Among Women who Exchange Sex in NYC
Sarah L. Braunstein, PhD MPH, Director, HIV Epidemiology and Field Services Program, NYC Department of Health and Mental Hygiene
The NYC Department of Health and Mental Hygiene conducted the fourth round of NYC’s National HIV Behavioral Surveillance Study (NHBS) among heterosexuals at increased risk for HIV infection in 2016. NYC was selected as one of five NHBS sites nationally to focus the 2016 cycle on recruiting high-risk women only, including women who exchange sex (WWES) for money or drugs. In this sample of NYC women who exchange sex, sexual risk behavior—specifically condomless sex—was common with both exchange and non-exchange partners and reported by women of all race/ethnicities. Women reported partnerships with both exchange and nonexchange partners with high-risk characteristics. WWES are an important group for promotion of and linkage to HIV prevention services, including condoms, HIV testing, and pre-exposure prophylaxis.
This session will discuss the process and the findings of the 2016 study.
Retelling the Story: HIV in Black America
C. Virginia Fields, M.S.W, President and CEO, National Black Leadership Commission on AIDS, Inc., Rev. Dr. Calvin Butts III, Senior Pastor, Abyssinian Baptist Church, Debra Fraser-Howze, M.P.A, Senior VP of Government & External Affairs,OraSure Technologies, Terrance Gardet, MS, MPH, Director, Community Partnerships Group, New York City Department of Health and Mental Hygiene, Bureau of HIV/AIDS Prevention and Control, Roscoe Boyd II, M.S.T, Spokesperson, National Black Leadership Commission on AIDS, Inc
The young pioneers of the civil rights movement birthed an era of advocacy, civic engagement and vison for Black Americans during the 1960's. Twenty years after the height of the civil rights movement, young leaders gathered once again to build an infrastructure for a public health epidemic rapidly endangering the Black family. Advocacy and need-based organizations such as NBLCA and Iris House, formed meaningful coalitions to effectively and efficiently address the HIV epidemic in the Black community. This workshop will retell the HIV narrative through a uniquely Black lens. It will reflect on the founding of the organizations committed to Black people battling HIV during the early years of the epidemic. Additionally, the workshop will discuss the political and programmatic initiatives implemented affecting Black Americans to understand the complexities and multi-faceted approach used during the early years of the epidemic. This approach will allow us to reframe effective interventions for this era and beyond.
Undetectable Equals Untransmittable: Building Hope and Ending HIV Stigma
Krista Martel, Executive Director, Bruce Richman, Founding Executive Director, Prevention Access Campaign, and Lillibeth Gonzalez, GMHC
Evidence confirms that people living with HIV who are on effective treatment cannot transmit HIV to sexual partners. If their viral load is 200 copies/ml or less (we define this as “Undetectable” for purposes of the campaign), they pose no risk. During this presentation, the panel will give an overview of U=U, including treatment as prevention (TasP), the scientific studies leading to U=U, the birth and evolution of the U=U campaign, issues specific to WLHIV, and the need to continue to disseminate this information far and wide. The workshop will provide practical strategies to educate about U=U and to break through the barriers of intersecting stigma, institutional racism, public health politics and phobias that block accurate and meaningful information from reaching people living with HIV.
Women’s Voices Raised: How the Regional Resource Network Program is Supporting Women in HIV prevention and Education Across the Nation
Shante Miller M.A., HIV/AIDS Consultant Regional Resource Network Program, Region IV, Lissette Marrero, MSW, HIV/AIDS Consultant Regional Resource Network Program, Region II, and Regina Waits B.S., HIV/AIDS Consultant Regional Resource Network Program, Region VI, U.S. Department of Health and Human Services
People of color continue to be disproportionately impacted by HIV in the United States. In 2015 African Americans represented 12% of the U.S. population, but accounted for 44% of new HIV diagnoses. Currently, Latinos represent 12% of the U.S. population and account for 16.5% of new HIV diagnoses. African American women have a diagnosis rate 16 times higher than white women, and nearly 5 times higher than Latinas. This panel discussion will address issues related to women and their lifetime risks for HIV. As well as the of lack of prevention messages tailored and targeted for women. Additionally, we will discuss how stigma impacts knowing ones status and accessing care. This session paneled by The Regional Resource Network Program (RRNP), a federal program charged with implementing the National Prevention Strategy, will examine key methods for supporting the most impacted regions of the United
States. In addition, the panelist will share the cutting-edge solutions utilized to engage women around testing, PrEP, and treatment as prevention. The audience will gain an understanding of the epidemic as it relates to women, and best practice solutions for reaching women nationally. Participants will get insight into the various measures the RRNP utilizes to meet the needs of women who are at risk or living with HIV.
4:00 PM Networking Session and Dessert
2018 Summit Sponsors