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Enhancing Engagement and Retention in Quality HIV Care for Transgender Women of Color

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The Special Projects of National Significance Enhancing Engagement and Retention in Quality HIV Care for Transgender Women of Color Initiative is a multi-site demonstration project initiative expected to provide funding during federal fiscal years 2011 - 2016 to support organizations that will design, implement and evaluate innovative interventions to improve timely entry, engagement and retention in quality HIV care for transgender women of color living with HIV infection. The primary focus of this initiative is to identify and successfully engage and retain in care transgender women of color who are at high risk of HIV infection or are infected with HIV but are unaware of their HIV status; are aware of their HIV infection but have never been engaged in care; are aware but have refused referral to care; or have dropped out of care.

Although CDC does not yet report HIV surveillance data for transgender women, who have been classified as Men who have Sex with Men, data from urban needs assessments and risk behavioral studies have shown high rates of HIV infection in this traditionally underserved population.  Transgender people experience significant difficulties when attempting to access all types of health care, and due to fears of discrimination, provider insensitivity, hostility and lack of knowledge about transgender health, many avoid care altogether until their need becomes acute.  The interventions of this initiative will address many of the barriers faced by transgender women of color who are living with HIV infection when they attempt to access HIV primary care.



Grants for this initiative are awarded to the organizations listed below. The abstracts provide a brief description of their project. Funding is anticipated for five years 2012-2017.


Bienestar Human Services, Inc., Los Angeles, CA 


Working in partnership with JWCH Institute, the Los Angeles Gay and Lesbian Center and Children’s Hospital Los Angeles, Bienestar has designed and will implement TransActívate, a comprehensive, innovative and much needed program to improve the timely entry, engagement and retention in quality HIV care for Latina transgender women in Los Angeles County. Their three medical providers were selected based upon their current expertise in HIV Primary Care and their connections with the transgender community. Bienestar’s program, TransActívate, seeks to encourage transgender Latinas to activate themselves to get tested for HIV, get engaged in care and to stay in care.

TransActívate strategies include Social Network Testing, Social Network Engagement, a Motivational Interviewing-based linkage and peer navigation intervention, and an innovative training component designed to increase provider competency in working with Latina transgender clients.  Social Network Testing will be used implement to identify transgender women of color who are infected with HIV but unaware of their status, as well as those who are at high-risk of HIV infection.  This strategy relies on HIV-positive and high-risk HIV-negative transgender women clients to identify others at risk within their social, sexual and drug-using networks.  Social Network Engagement is an adaptation of Social Network Testing that Bienestar uses to find women who have been diagnosed with HIV but are not currently in care.  This strategy will enlist HIV-positive transgender women of color to identify their peers who are aware but not in care; aware of their HIV infection but have never been engaged in care; are aware but have refused referral to care; or have dropped out of care in Los Angeles County.  The  Motivational Interviewing-based linkage and peer navigation intervention is designed specifically to address barriers related to accessing and remaining engaged in care, including denial, substance abuse issues, mental health problems, lack of social support, and low self-efficacy.


Chicago House and Social Service Agency, Chicago, IL 

TransLife Care Project (TLC Project)

The collaborative TransLife Care Project (TLC Project), led by Chicago House and Social Service Agency, is a comprehensive and multi-strategy approach to identifying HIV-positive transgender women of color who are out of care, engaging them successfully in accessible, quality, and culturally competent HIV primary care, and supporting their continuous engagement in care with individual and structural-level support systems. The project’s core intervention will utilize a strengths-based, case management approach to provide transgender women of color with intensive, short-term linkage-to-care services from TransLife Care Coordinators, and connecting them to resources that address their essential and prioritized needs to support their long-term retention in care.  The TLC Project will leverage the resources and expertise of five project partners – AIDS Foundation of Chicago, Center On Halsted, Children’s Memorial Hospital, Heartland Health Outreach, and South Side Help Center – to identify transgender women of color living with HIV, create a broad network of culturally competent care providers, and delivery an array of ancillary, wrap-around services that help marginalized transgender women overcome barriers to care.

Identification and recruitment strategies will include street and community outreach, linkage with HIV testing/counseling providers and case managers, and a social networking strategy supported by numerous local transgender support organizations. Strategies to support engagement in care will include intervention sessions and linkage-to-care services of mobile TLC Coordinators, as well as Chicago’s first transgender-focused, weekly, drop-in center, the TransLife Care Center. The TLC Center will co-locate social, educational, and basic needs services with linkage-to-care services, in a safe, non-clinical environment, where targeted programming will include health education and group consultations from partnering medical care providers, to help encourage and reinforce engagement in HIV primary care.


City and County of San Francisco, San Francisco, CA 

TransAccess: A Program to Enhance Engagement & Retention in HIV Care for Transgender Women of Color in San Francisco, California 

 TransAccess will forge a unique public / private partnership model in which the medical services of a public community health clinic with an established specialty in transgender medical care - the Tom Waddell Health Center - are transported and integrated into a respected and highly trusted community-based transgender support program - the TRANS:THRIVE program at Asian & Pacific Islander Wellness Center - with the explicit goal of enhancing utilization of and retention in HIV medical care by underserved transgender women of color. The program will create a unique neighborhood-based transgender medical home specifically designed to address the complex needs of this critically impacted population. Through TransAccess, a medical team from the Tom Waddell Health Center will be out-based at Asian & Pacific Islander Wellness Center one day each week to provide HIV and other medical services to transgender women of color in a setting that is safe, welcoming, and respectful of transgender people and their needs, and that is located directly within the San Francisco neighborhood that has highest concentration of transgender residents - The Tenderloin. This medical care model will be enhanced by a range of outreach, linkage, and supportive services designed to significantly increase the number of transgender women of color in San Francisco who are aware of their HIV status and involved in regular medical care on a long term basis, including enhanced linkages to behavioral health, housing, and employment services.

The project will include significant staffing by transgender women, including the positions of Project Director, Transgender Case Manager, and Transgender Outreach Workers / Navigators. TransAccess will also provide opportunities for HIV-affected transgender women of color to play an expanded leadership role through participation in a Transgender Leadership Team, a new proposed transgender Speakers Bureau, and client-developed social media components. Requested SPNS funding will enable our network to develop a model intervention in which HIV-affected transgender women of color who are resistant to accessing care in traditional medical settings are given the opportunity to receive comprehensive medical services within a neighborhood-based, transgender-specific social services setting which has forged strong bonds of trust with the transgender community. The new medical clinic will emphasize the availability of high-quality, supervised hormonal therapy within the clinic as a strong incentive for HIV-infected and affected transgender women to enter care. The intervention is expected to significantly increase both the number and percentage of HIV-positive and high-risk HIV negative transgender women of color in San Francisco who are receiving HIV care and are remaining adherent to HIV treatment.


Community Healthcare Network, New York, NY 

Transgender Women Engagement and Entry to Care Project (TWEET Care Project)

The TWEET Care Project is a peer-based model of outreach and engagement designed to increase access to and retention in quality HIV primary care for transgender women of color in New York City. The goals of the TWEET Care Project are to promote access to quality care among HIV positive transgender women of color in New York City, to increase retention in care and promote re-engagement in care, to improve the quality of life of the enrolled clients through access to comprehensive care and educational opportunities, and to evaluate program activities and facilitate program replication. The TWEET Care Project will be implemented at CHN’s Family Health Center which serves the medically-underserved community of Jamaica, Queens. The project will target transgender women (MTF) of color that have been newly diagnosed as HIV-positive or have been lost to care. Based on lessons learned from CHN’s prior experience outreaching to the transgender community, the project will not only conduct outreach throughout the area surrounding the Family Health Center, but will expand the reach of the project to target HIV-positive, transgender women of color throughout New York City.

Drawing on Social Cognitive Theory, the Transtheoretical Model of Behavior Change, and Motivational Interviewing method, the TWEET Care Project utilizes Peer Leaders that represent the target community to outreach, engage, and link HIV-positive, transgender women who are newly diagnosed or lost to care. Transgender people often encounter a variety of challenges, stigmas, and prejudices when attempting to access health care services, and research highlights the complexities and challenges that can occur within the provider and transgender client relationship that can contribute to a reluctance to engage in care, or disengagement once in care. By empowering transgender individuals to become advocates and educators for their peers that are not currently receiving care, the TWEET Care Project aims to reduce or eliminate the individual- and system-level barriers that transgender women of color often encounter in accessing healthcare and HIV treatment.


Friends Research Institute, Baltimore, MD 

The Alexis Project 

The Alexis Project will employ a multi-tiered, comprehensive approach, which includes network, individual and structural components to identify, recruit, test, link, treat and retain transwomen of color into quality HIV care.  Its goals are 1) to conduct formative evaluation to develop the design, measures, and procedures for The Alexis Project, 2) to identify, recruit and test transwomen of color in Los Angeles County through the Social Network Testing Program, 3) to directly link HIV-infected transwomen of color identified through the Social Network Testing Program to a Peer Health Navigator, 4) to identify transwomen of color who are already aware of their HIV infection but have never been engaged in care or have refused a referral to care or have dropped out of care and to directly link to a Peer Health Navigator, 5) to link HIV-infected transwomen of color to quality HIV care, 6) to work with HIV-infected transwomen of color to address the barriers in their life that limits or impedes their access to HIV care and, 7) to retain HIV-infected transgender women of color in HIV care to reach and sustain HIV milestones.

The Alexis Project will incorporate three proven models, Social Network Recruitment (network); Peer Health Navigation (individual); and Contingency Management (structural) into one multi-leveled project to optimize HIV health outcomes for transwomen of color. Through Social Network Recruitment, local transwomen will recruit transwomen of color from their social, sexual and drug-using networks into the project for either testing (HIV unknown status) or (for those who are aware of their HIV infection but not in care) to the combined Peer Health Navigation and Contingency Management intervention. Peer Health Navigators will work with participants to identify HIV care services and other needed services, develop specific client-centered treatment plans, remove barriers to those services and access those services. Contingency Management will provide increasing valuable incentives for attending HIV medical visits and reaching and sustaining HIV milestones.


Howard Brown Health Center, Chicago, IL 

Drop-In Program 

Howard Brown Health Center (HBHC) will implement its Drop-in Program for transgender and gender non-conforming individuals, with a special focus on African American and Latina transgender women ages 16 and older, living in the Chicago metropolitan area.  The Drop-in Program seeks to improve entry into HBHC’s system of healthcare and engage transgender women of color by reducing the geographic, social, and emotional barriers which interfere when they seek medical treatment.  This culturally sensitive and multi-faceted intervention includes access to basic needs, social support, hormone replacement therapy (HRT), HIV/STI testing, treatment and primary care.  HBHC aims to significantly reduce both time and barriers for transgender women of color in accessing quality health care.  HBHC will provide medical resources that are sensitive to their unique needs and has assembled a team of medical providers and peer-based staff specifically for this intervention who have a long history of working with and for the transgender community.  These care providers have demonstrated their ability to develop trusting relationships to engage and retain patients and provide a welcoming environment that is accepting to all.

Through the Drop-in Program, HBHC will establish multiple, accessible and health-affirming Drop-in locations as a consistent resource for transgender and gender non-conforming individuals to access care within a primary care setting.  HBHC will utilize a team of peer-outreach leaders and patient navigators to educate and recruit transgender women from the entire Chicago metropolitan area to the Drop-in locations.  As the project develops over time, additional Drop-ins will occur at collaborating agencies/site locations. Within each of these sites, HBHC will support the creation a culturally sensitive and trusting environment for transgender women of color to access risk reduction resources, education, testing and care. Drop-in staff members will encourage all attendees of these mobile Drop-ins to receive HIV/STI testing and treatment, and access primary care services within this socially engaging environment that accepts gender diversity while providing access to quality healthcare.  HBHC’s peer-based programming will create a safe and affirming place where program participants can feel comfortable discussing issues relating to gender history such as self-efficacy, sexual health including exposure to HIV and other co-morbidities, depression, and substance use.

In addition to the Drop-in Program, HBHC will offer access to hormone therapy (HRT) through its informed consent model of care.  During these appointments, transgender and gender non-conforming individuals will be encouraged to be tested for HIV or other sexually transmittable infections, will have the opportunity to explore sexual risk reduction, and will be informed of the risks of using non-medically prescribed hormones.  Anyone who tests HIV-positive will immediately connected to HBHC’s robust linkage to care program for HIV treatment, primary medical care and ongoing support.


Public Health Institute, Oakland, CA 

The Butterfly Project 

The Butterfly Project is an innovative intervention utilizing programs with multiple techniques to identify, engage and retain African American transgender women living with HIV infection. Through implementing culturally sensitive and transgender specific outreach programs in African American transgender communities in Oakland/Alameda Country, the Butterfly Project will identify African American transgender women who are at high risk for HIV infection or are infected with HIV but are unaware of their HIV status; are aware of their HIV infection but have never been engaged in care; are ware but have refused referral to care; or have dropped out of care.  The project will engage these targeted African American transgender women; enroll eligible clients in the Butterfly Project; provide HIV counseling and testing, comprehensive case management and client advocacy based on the Motivational Enhancement Intervention (MEI); and retain and monitor the comprehensive HIV primary care and other necessary services in collaboration with service providers in Alameda County and San Francisco.  The project will evaluate the efficacy and impact of the Butterfly Project in collaboration with the Transgender Evaluation and Technical Assistant Center (ETAC), disseminate findings and experience to service providers and transgender community members, and sustain the Butterfly Projects in collaboration with the Community Advisory Board (CAB), transgender community members, and local, State, and national government agencies.

The project will conduct culturally appropriate and target-group specific community outreach, utilizing ethnographic mapping, motivational interviewing techniques, responded driven sampling methods, Internet-based outreach, and in-reach methods to recruit high risk African-American transgender women in Alameda County and provide HIV counseling and testing. The project will adapt and tailor PHI’s current innovative intervention programs, and develop and implement MEI which will provide client-centered and behavioral and cognitive counseling to increase retention, adherence to medication, and self-esteem and self-management skills throughout the course of HIV primary care and other necessary services. In addition, the Butterfly Project will increase the capacity of transgender communities in Alameda County through operating the Butterfly Nest, a store-front safe place for transgender women of color, where weekly support groups and health promotion workshops will be held.


Research Foundation of the State University of New York, Albany, NY 

The Infini-T Project 

The Health Education Alternatives for Teens (HEAT) Program of State University of New York (SUNY) Downstate Medical Center (DMC) provides age- and developmentally-appropriate, culturally-competent HIV care for heterosexual, lesbian, gay, bisexual, transgender (LGBT) and perinatally-infected youth (ages 13-24), primarily from communities of color in Brooklyn, NY. For its Infini-T Project, HEAT will expand upon an existing partnership with the Hetrick-Martin Institute, NYC’s largest agency serving LGBT youth. Infini-T aims to: 1) ensure early identification of new HIV cases among Transgender Young Women of Color (TYWOC); 2) ensure timely entry into co-located transgender HIV care; 3) provide early engagement in mental health services for HIV+ and high risk HIV- TYWOC with unmet mental health needs; 4) increase the retention rates of TYWOC already receiving HIV medical care; 5) re-link to care HIV+ TYWOC who were previously in care, but lost to follow-up; and 6) retain HIV- TYWOC with significant risk factors for acquiring HIV in transgender care at HEAT.

Utilizing HEAT’s multidisciplinary team of social work, case management, peer advocacy, mental health and medical providers, Infini-T will identify, engage and retain HIV+ and high risk HIV- TYWOC in care by: 1) hiring a transgender Peer Youth Advocate to provide linkage to HIV testing and care at HEAT and navigation to facilitate adherence to medical, mental health and psychosocial appointments; 2) adding supplemental social work services for screening assessments, referrals, and support groups; 3) enhancing transgender-focused mental health services to assess unmet mental health needs (barriers to engagement and retention in care); 4) engaging an HMI staff member as a transgender Youth Services Specialist to enhance outreach, engagement, referral and linkage of HMI youth outside of the clinical setting to HEAT services; and 5) engaging a transgender health consultant to develop, administer, and train other project staff on the proposed intervention. Infini-T will also pilot a grass roots group-level psycho-educational intervention, Just One Of The Girls (JOG), adapted from the evidence-based intervention for African-American women, Sisters Informing Sisters about Topics on AIDS (SISTA). HEAT will evaluate the success of Infini-T’s multidisciplinary strategy to maximize the effectiveness of interventions aimed at HIV+ and HIV- TYWOC, and expects the outcomes to include improved self-assessed and clinically-derived quality of care for project clients.


Tri-City Health Center, Fremont, CA 

The Brandy Martell Project 

Tri-City Health Center’s (TCHC) TransVision program has provided HIV services to transgender people in Alameda County since 2002. TransVision provides culturally and trans appropriate service delivery within a comprehensive integrated continuum of care, leading to an increase in HIV positive transgender women of color utilizing services. Services provided include hormone therapy, outreach, one-on-one risk reduction counseling, agency and venue-based HIV, HBV/HCV, TB and STD screening and HAV/HBV vaccination, one-time and multi-session groups, Comprehensive Risk Reduction Counseling Services (CRCS) and comprehensive HIV Care. TransVision is run by and for transgender women. As a result, services provided are culturally competent and catered to the specific needs of transgender women.

The Brandy Martell Project is an innovative intervention implemented by the TransVision program that will address and reduce structural barriers that increase high risk behaviors inhibit transgender women of color from engaging and remaining in HIV prevention and care services. The basic components of the project will include legal services to assist clients in navigating the criminal justice system; a menu of services intended to empower and equip clients with skills and resources to education, housing, and employment; enrollment in health care including hormone therapy, and HIV prevention and care services. To implement the program, peer educators from the target population will be hired to conduct marketing and recruitment. In addition, TransVision health educators will provide case management to new and existing clients. Also, a trained lawyer (Legal Liaison) will be hired to help in legal issues. The continuum of services provided that cater to each client’s needs will significantly reduce structural barriers, enabling them to enroll and remain in HIV prevention and care services.


University of California at San Francisco's Center for AIDS Prevention Studies, San Francisco, CA 

Transgender Evaluation and Technical Assistance Center (TETAC) 

The Center for AIDS Prevention Studies (CAPS) at the University of California, San Francisco (UCSF) is uniquely positioned to serve as the Transgender Evaluation and Technical Assistance Center (ETAC) for this initiative. CAPS has organized a strong, multi-disciplinary team with extensive experience in evaluation research, providing technical assistance, developing and implementing capacity building services, and widely disseminating findings to diverse audiences. The UCSF Center of Excellence for Transgender Health (CoE) is an integral part of this proposal. The CoE is an international leader working to improve the overall health and well-being of transgender individuals by developing and implementing programs in response to community needs. The combined experience of CAPS and the CoE will provide excellent leadership to the demonstration sites implementing interventions to improve the timely entry, engagement, and retention in quality HIV primary care for transgender women of color.

The goals of the TETAC are: 1) to conduct rigorous, cross-site evaluation research that will make a significant contribution to improving the timely entry, engagement, and retention in quality HIV primary care for transgender women of color; 2) to provide high-quality, effective technical assistance (TA) to the demonstration sites to have the most impact on improving the timely entry, engagement, and retention in quality HIV primary care for transgender women of color. TA will be tailored to the specific needs of each demonstration site and will be provided through teleconferences, a website, webinars, site visits, and meetings; 3) to provide capacity building assistance (CBA) relating to the provision of quality clinical and culturally competent HIV primary care and social services to transgender women of color; 4) to synthesize and disseminate findings from demonstration projects to optimize impact on the timely entry, engagement, and retention in quality HIV care for transgender women of color.

The UCSF TETAC team will use both qualitative and quantitative methods to assess engagement in care, utilization of services and outcomes of care associated with demonstration site interventions, as well as clinic, provider, and individual-level factors which impact the effectiveness of these interventions.  Additionally, the TETAC will collaborate with the demonstration sites to assess their specific needs, and develop TA and capacity building plans to meet those needs. Finally, the TETAC will lead a coordinated effort to disseminate findings from this initiative. Together, the aims of this project will help to achieve the goals outlined in the National HIV/AIDS Strategy to reduce the number of new HIV infections, to increase access to testing and linkage to care and to improve health outcomes for transgender people living with HIV, and to reduce HIV-related health disparities.


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