NQC Logo



in+care Newsletter

Issue 24

National Campaign to Improve Retention in HIV Care
in care Logo 
In This Issue
Provider Spotlight
Journal Spotlight

52 days

until the next data submission deadline

Enter your data at: incarecampaign.org/database

Like us on Facebook!

 Spread the word to help others make an impact on the lives of people living with HIV/AIDS.


 Like us on Facebook

Like us on Facebook.

Data - National Averages*

(as of 11/30/13)

Gap Measure
(149 sites, 106,856 patients)


Visit Frequency Measure
(142 sites, 89,603 patients)


New Patient Measure
(146 sites, 6,152 patients)


Viral Load Suppression
(149 sites, 126,450 patients)


*data not unduplicated
Website Updated!

 The in+care Campaign has recently updated its website to make searching for Retention Strategies and Tools easier for you! Visit the website today to explore the new area!

Quick Links

Campaign Headquarters

National Quality Center (NQC)

New York State Department of Health AIDS Institute


90 Church Street, 13th floor
New York, NY 10007


Work: 212-417-4730
Fax: 212-417-4684


Trans Patients and Retention in+care


This newsletter issue examines how to improve retention in care for transgender patients. HIV affects transgender populations disproportionately, and transgender people are more likely to face stigma and discrimination when accessing medical services. 
Campaign webinars focusing on the transgender experience that have explored some of these considerations can be accessed on our website.
If you have implemented retention improvement strategies focusing on transgender populations and you would like to share with the Campaign, please spend five minutes to report them at this link.
Upcoming Events
+ Partners in+care Webinar | SPNS Projects Examine Retention in+care for HIV-Infected Transgender Individuals
Tuesday, December 10, 2013 | 2pm ET
Agenda: In 2012, HRSA funded a new SPNS project examining retention in HIV care among transgender women of color. During this webinar, JoAnne Keatley from the Center of Excellence for Transgender Health at the University of California at San Francisco will provide an overview of the issues faced by this community with regard to their retention in HIV care. In addition, Dr. Freddy Molano from the Community Health Network of New York City will discuss specific interventions medical providers can try to improve their transgender patient retention in care. The webinar will conclude with a panel discussion on this topic involving both consumers and providers.
Please note that no prior registration is needed to participate in this webinar. Just click the webinar link to join and enter the room as a guest. Type your name when prompted to enter the webinar room. If you have any questions, comments or concerns you would like addressed during the presentation, please send them to Michael Hager in advance (Michael@NationalQualityCenter.org).
Dial-in Number: 866.394.2346
Participant Code: 397 154 6368 #
Webinar URL:
+Next Retention Measures Submission Date
January 3, 2014



+ Next Improvement Update Form Submission
December 15, 2013
Keep up-to-date with the latest in+care events through our webpage: http://incarecampaign.org/index.cfm/75283


What's Next for the in+care Campaign?

The Campaign's active phase will be transitioning to a sustaining phase as of January 1, 2014. Even though the Campaign's newsletters and webinars occur less frequently, the Campaign is here to stay! You'll still be able to submit your performance data online and receive benchmarking reports for the years to come. News and important content related to the in+care Campaign will be shared and disseminated through the monthly NQC eNewsletter and NQC TA Calls. Starting in January 2014, focus will shift to highlight the results of all your hard work and to feature community providers that have shared retention improvement strategies they have put in place at their agencies. 

Provider Spotlight - Meeting the Needs of Transgender Clients

This month, we've asked two long-time providers of services to the transgender community to share some insights based on their experiences working with this population.


HIPS: Creating a Welcoming Environment for Transgender Clients


Since 1993, HIPS has been providing a range of services to individuals who engage in street-based sex work.  The Washington, DC-based agency strives to provide harm-reduction, advocacy, and community engagement services that are respectful and non-judgmental. Through its work on the streets, HIPS reaches transgender individuals who are engaged in sex work. Over time, these services have been expanded.


"We opened our services to all transgender people," says Cyndee Clay, executive director. "There was a need and we were effective in our work with this population."


Critical to engaging transgender individuals is the creation of an environment that is welcoming at multiple levels-from the clinical staff to the receptionist. This population regularly faces misunderstanding, discrimination, and stigma and may have had negative experiences in the past as they have sought services. All staff receive basic training on how to sensitively interact with transgender patients-such as what pronouns to use and calling the client by his or her preferred name (not necessarily their legal name).


HIPS takes a holistic approach to their clients' health care needs. Often, transgender patients are seen in the context of HIV and the focus is on their sexual health. Clinical providers should be knowledgeable about transgender health as well as HIV, since patients often report having to educate their health care providers about transgender health care. However, it is also important for providers to treat the patient as a whole person - and not just assume that the patient is coming in for a trans-specific health issue.  This is especially important as the medical home model becomes more prevalent. 


For HIPS, the first step in linking a client to health services is an assessment to determine the client's needs and learn about their prior experience with the health care system.  If the client has had a bad experience with a specific provider, they may not follow up on the referral.  Working with each client on an individual level and figuring out what will work best for them is essential. HIPS works with several different providers so clients have options.


The individualized approach is important because significant access barriers to health care exist for transgender individuals.  To facilitate access to and retention in care, Cyndee emphasizes the use of specific strategies.  First, it is essential to recognize the legacy of discrimination and stigma and that our culture can be very hostile to transgender individuals. Because they have so many challenges in their lives-housing, employment, mental health issues, etc.-health care may not be their top priority. Working within this framework, HIPS seeks to create a community of providers around clients that offer a complete range of health care and social services. Not only do the services need to be available but the providers must offer a welcoming environment. All staff need sensitivity training (i.e., Transgender 101) to ensure that transgender clients feel they belong. Even better is to hire transgender employees-not just to work with transgender clients but throughout the agency.


"Nothing is more powerful than to see someone with similar experiences," says Cyndee. "They send a message that transgender people are not only accepted but valued."


Community Healthcare Network: Focus on Communication


"With this population it is even more important to treat each person as an individual and to make no assumptions," says Dr. Luis Freddy Molano.


Dr. Molano is Vice President of the Infectious Diseases and LGTBQ Programs and Services at the Community Healthcare Network (CHN) in New York City.  In his nine years with the program he has learned that the only way to learn how a person identifies is to let him or her tell you.  Working with transgender individuals involves a lot of listening. But to get to the answers, providers must also know how to ask the right questions.


From initial contact with a new client, staff seek to identify the complete range of the client's needs-such as their health care needs beyond HIV and their current living condition.  A critical element of the approach is to ask the client if he or she would like a "family member"-either biological, extended, or adopted-to be involved in care. Not only do these family members provide support, they can also serve as an additional point of contact should the client be lost to care.  Since CHN offers comprehensive health care services, approximately 90 percent of family members come to access health care at the clinic. This helps strengthen ties with family members.


At their initial appointment, clients are introduced to the entire clinical team (e.g., nutritionist, social worker, and mental health provider).  Emphasizing that support services are integrated into the care model and establishing an initial rapport helps lay the ground work for ongoing communication.


While it is important for providers to be good listeners during their one-on-one interactions with clients, CHN also seeks to gain feedback from clients at a systemic level. Gaining client input is critical at the developmental stages as well as on an ongoing basis-whether it is a single person within the clinic that can listen to clients' concerns or through other mechanisms. For example, CHN was able to reduce the no-show rate by extending clinic hours until 7:00 pm after learning from patients that they did not want morning appointments.  CHN also learned from clients that many do not have regular access to phones and contact numbers change frequently. Contacting clients through Facebook for reminders about appointments and support groups has proven much more effective.  Having transgender people on staff is also an effective way of gaining input about the needs of this population.


To ensure that staff is well prepared to hear the concerns of their transgender clients, Dr. Molano stresses the importance of training.


"During the training, it is important to acknowledge that there may be some level of discomfort on the part of staff," says Dr. Molano. "This acknowledgement allows you to work toward addressing it. By listening to staff concerns, you can learn if more sensitivity training is necessary."


Dr. Molano also recommends involving transgender individuals in staff training. In addition to the training, Dr. Molano stresses that a clear set of policies and procedures that address bias and provide a guide of how staff should interact with transgender clients is critical.


"The policies and procedures will hold people accountable," says Dr. Molano.


Journal Spotlight - 

Retention in Care and Health Outcomes of Transgender Persons Living with HIV

Yehia, B.R., Fleishman, J.A., Moore, R.D., et al. Retention of care and health outcome of Transgender Persons Living with HIV. Clinical Infections Diseases 2013, 57(5): 774-6.

The researchers conducted a retrospective cohort study to examine whether retention in care, use of antiretroviral therapy (ART), and HIV suppression differ between transgender and non-transgender people living with HIV/AIDS (PLWH). Prior to this study, there had been few studies related to the health outcomes of transgender individuals living with HIV/AIDS, which documented low ART coverage and suboptimal adherence to HIV treatment in transgender patients.

Transgender individuals face many challenges in accessing and remaining in HIV care. Discrimination and social isolation can have a negative impact on engagement in care. Once in care, concerns about adverse interaction between ART and hormone therapy may result in resistance to starting ART or poor adherence to the regimen.

The study cohort include 36,845 PLWH receiving care in 13 HIV clinics across the United States between 2001 and 2011. Of the patients studied, 285 self-identified as transgender. These patients were more likely to be young, Hispanic, and report male-to-male sexual contact as their HIV risk factor.

In multivariate analyses, retention in care was similar for transgender patients and nontransgender men. Non-transgender women were more likely to be retained in care. Use of ART and rates of viral suppression were similar across the three groups.

The researchers concluded that the results reflect improvements in health equity for transgender individuals living with HIV. Advances in HIV therapy (e.g., new ART drugs, simplified dosing, and greater tolerability) most likely have contributed to these improved outcomes. The researchers acknowledge that there are limitations to the study's findings. These include the retrospective nature of the study, the small sample of transgender patients, and the focus on patients that are already engaged in care.

Given the findings of the study, the researchers have identified other important areas of study.

"Next steps would be to examine health outcomes among different transgender groups-whether male to female or female to male," states Dr. Baligh Yehia of the Department of Medicine at the University of Pennsylvania. "In addition, examining the full cascade of care for transgender individual would be a useful tool to identify gaps in care and target interventions." 

Connect. With patients.
Collaborate. With a community of learners.
Change. The course of HIV. 

incareCampaign.org  |  212-417-4730