The 2016 International AIDS Conference theme is “Access Equity Rights Now”, and one important objective involves recognizing that the “cross-cutting issues of criminalization, gender-based violence, sexual and reproductive health, rights, and stigma and discrimination” deeply impact people living with HIV everywhere. The CCC is proud to support the International AIDS Conference theme by taking this opportunity to highlight the health needs of trans women living with HIV in this Case of the Month.
A nurse practitioner working in a rural health center called the CCC HIV Warmline about a 22-year-old trans woman who had been taking co-formulated elvitegravir/cobicistat/tenofovir DF/emtricitabine (Stribild®) for the last year after discontinuing the previous efavirenz-based combination because of persistent bothersome side effects. These included mood changes, dizziness, and sleep difficulties complicating the patient’s depression and anxiety. Review of lab testing indicates the patient has never continually maintained virologic suppression since diagnosis; most recent CD4 count is 142 cells/mm3 and viral load is 73,280 copies/mL. The patient reports taking ARVs daily for the past two weeks, but missed three doses last month due to travel. The caller thinks the patient is overestimating her medication adherence, as she frequently misses clinic appointments and the pharmacy has not called recently for refills.
The patient says she only has a few friends in the local community, and she lives with her mother who is unaware of her HIV status. She travels almost every weekend to the nearest city three hours away, stating she feels more comfortable with the social scene and community there.
The caller asked what to do next regarding ARV management.
CCC Consultant Response
The consultant recommended obtaining ARV resistance testing before making any treatment changes. The possibility of reverse transcriptase and integrase inhibitor resistance is present, given the patient’s overall treatment and viral load history. A thorough review of the patient’s chart may also shed light on whether any prior resistance testing has been done. This information could potentially complement resistance testing results obtained now.
The consultant also noted that additional challenges could be affecting adherence to medications and care for this patient. These challenges include limited social support networks, ongoing depression/anxiety, and possible fears and concerns around disclosing her HIV status to loved ones. It might also be worth asking the patient about her experiences of discrimination or violence, whether related to her gender or not, and past (or current) trauma. Stress caused by transphobia can negatively impact both mental health and adherence. As a group, trans women experience severe health disparities with significantly higher rates of HIV infection, are less likely to receive ARVs, and report limited access to health care1. Understanding the particular challenges and needs of trans women can lead to improved health outcomes. In one study, trans women living with HIV who were older, happy with their gender expression, and adherent to hormone therapy were more likely to have excellent ARV adherence2.
As with other cases involving similarly complex situations, the consultant encouraged the caller to try to engage the patient in a broader conversation about life circumstances that might be impacting motivation and ability to take ARVs consistently. Although the caller was specifically focused on ARV management, the CCC consultant also encouraged them to discuss prevention for the patient’s sex partner(s), including treatment as prevention as well as PEP and PrEP.
Finally, given the history of unpleasant side effects attributed to efavirenz, the consultant recommended engaging the patient in a careful review of potential side effects once future ARV combination options were identified. An understanding of what the patient is willing to tolerate in terms of side effects/toxicity could help the clinician select a regimen the patient is less likely to feel anxious about, and could also help promote optimal adherence. It may also be beneficial to explore the patient’s ideas and intentions regarding gender-affirming hormone therapy; this includes asking whether the patient has taken non-prescribed hormones and what role (if any) they play in future plans. For individuals who prioritize hormone therapy over HIV treatment, competing needs and priorities may adversely affect ARV adherence. Providers who can support or even gain experience in prescribing/managing hormone therapy may find that integrating transgender health services into their HIV care leads to improved patient retention, ARV adherence, mental health outcomes, and patient satisfaction.
1. Sevelius JM, Keatley J, Gutierrez-Mock L. HIV/AIDS programming in the United States: considerations affecting transgender women and girls. Womens Health Issues Off Publ Jacobs Inst Womens Health. 2011 Nov; 21(6 Suppl): S278-82.↩
2. Sevelius JM, Saberai P, Johnson MO. Correlates of antiretroviral adherence and viral load among transgender women living with HIV. AIDS Care. 2014; 26(8): 976-82. doi: 10.1080/09540121.2014.896451. Epub 2014 Mar 20.↩
Online Clinical Resources:
UCSF Center of Excellence for Transgender Health
World Professional Association for Transgender Health
NYS Department of Health AIDS Institute Guidelines on Care of HIV-Infected Transgender Patients
Transgender HIV/AIDS Health Services Best Practices Guidelines
Callen Lorde Community Health Center
Tom Waddell Health Center Transgender Protocols
Because CCC consultations are based on information provided by the caller or clinician accessing the online consultation center, without the benefit of a direct evaluation or examination of the patient, consultations are intended to be used as a guide. They do not constitute medical advice and are not to serve as a substitute for medical judgment.