HIV Care and HIV Care Continuum

Transforming Health
Download or order clinician and patient materials from CDC's Let's Stop HIV Together campaign

The HIV care continuum refers to the series of steps necessary to identify and manage HIV infection successfully, ranging from HIV diagnosis to ongoing suppression of the virus with antiretroviral therapy (ART). All health care providers, including those who specialize in HIV care and those who do not, play a critical role at each of these steps by screening, testing, and maintaining a supportive patient–provider relationship to ensure patients’ ongoing engagement in care. Few studies have assessed HIV outcomes among transgender women, so data on the HIV care continuum in this population are limited. Nevertheless, the evidence available suggests that many transgender women do not achieve viral suppression and other important milestones along the HIV care continuum.
Many transgender women living with HIV are not receiving HIV treatment. Available research indicates that many are neither engaged in care nor virally suppressed on ART1. Failure to achieve viral suppression endangers the health of these women and increases the likelihood that they will transmit HIV to others.

Suppression of the HIV infection is the primary goal of HIV treatment. Viral suppression prevents many of the complications of HIV and AIDS and significantly reduces the likelihood that those living with HIV will transmit the infections to others. For sexual transmission, there is effectively no risk of transmitting HIV through sex among mixed-HIV-status couples when the partner with HIV achieves and maintains viral suppression.

An infographic identifies the following five continuum of care components, from left to right: 1. Testing/diagnosis of HIV infection. 2. Linkage to care, often defined as having at least one medical visit within 30 days of an HIV diagnosis 3. Engagement or retention in care, defined as ongoing contact with the medical system for HIV treatment 4. Prescription of antiretroviral therapy, or A R T 5. Suppression of HIV infection, as measured by the level of the virus in the blood 6.The infographic also states that suppression of the HIV infection is the primary goal of HIV treatment.

Access to care. Across the continuum, one of the foremost obstacles is lack of access to care. Historically, transgender women have reported high rates of being uninsured compared to the general population2, likely because of poverty and employment discrimination. Even among those who are insured, stigma and discrimination can pose formidable barriers to health care. Transgender people may delay or avoid care entirely because of concerns about discriminatory treatment by medical staff. When they do access care, transgender people may hide their transgender identity to avoid poor treatment, which can complicate health outcomes.

From the Perspective of a Health Care Provider:

“You could have been made fun of the entire way to the health provider’s office, and when you get there you may still face stigma and discrimination. Even in the doctor’s office you might face incorrect pronoun use, misnaming, hostile waiting rooms, or being asked to use bathrooms that don’t support your gender identity.”

– West Coast health care provider

It is important that, when transgender people seek medical care, health care providers welcome them and provide medically appropriate services. Services should include discussions about sexual practices and assessment of trauma across the lifetime.

Housing instability and physical or emotional trauma may exist. More research is needed on barriers to HIV care. However, housing instability and recent physical or emotional trauma3 have both been associated with failure to achieve viral suppression. In one survey of transgender people living with HIV, the most commonly cited obstacles to accessing HIV care included lack of transportation, poor treatment by health care staff due to being transgender, and financial constraints.4 In a qualitative study, transgender women living with HIV described avoiding medical care when they were first diagnosed because of past negative experiences and uncomfortable encounters in health care environments. For example, one participant in the study noted, “I go by [female name], but my ID still says [male name]. With me looking like I do, if they call me [male name] in front of the other patients, I might just walk out.”5

To help address these barriers, all health care providers can take steps to provide transgender women with . Health care providers can also ask HIV-positive transgender women about potential barriers—housing, transportation and financial problems, abuse or violence, and other obstacles to care. Providers can also assist patients by making referrals to social workers, mental health providers, or programs for survivors of violence, as needed. The trauma and stress induced by stigma and discrimination, as well as the related effects of under- and unemployment, homelessness, lack of access to care, and lack of insurance, can create a great burden on the mental health of transgender people. Research has found that, compared to the general population, transgender people have higher rates of mental health issues and suicide attempts.6,7

Transgender women may prioritize other health issues over HIV treatment. In a survey of 157 transgender people—predominantly transgender women—living with HIV, respondents’ top health concern was receiving patient-centered health care without stigma, followed by hormone therapy and mental health care. ART was the fifth most important health priority. Developing a care plan that addresses all the health concerns of transgender people in conjunction with HIV treatment can improve ongoing engagement and trust.

One way that some providers can address these competing priorities is to collocate or integrate services relevant to the local transgender community. The colocation or integration of patient-centered care, mental health care, and HIV care can reduce such barriers as transportation and enable greater continuity and engagement in health care. Fenway Health,external icon Callen-Lorde Community Health Centerexternal icon and the Center of Excellence for Transgender Healthexternal icon serve as examples of integrated services and offer provider resources.

Counseling messages can reinforce meaningful engagement in care and adherence to ART. Adherence to ART over the long term can be challenging. Here are some examples of questions that probe ongoing adherence:

  • “How has it been going taking your medicines?”
  • “What seems to get in the way of you taking your medicines?”
  • “What was going on when you missed that dose you told me about?”
  • Brief discussions with patients at every office visit help build relationships that keep patients engaged in their own care over the long term.8,9,10

Taking ART to achieve and maintain an undetectable viral load enables patients with HIV to stay healthy. It also helps prevent transmission to others, which is known as treatment as prevention. This method is extremely effective for preventing sexual transmission of HIV. People with HIV who take ART as prescribed and achieve and maintain an undetectable viral load have effectively no risk of transmitting HIV through sex. More research is needed to understand how well it prevents transmission by other routes.

Little research exists on the prescription of ART for transgender women, and research on viral suppression is somewhat mixed.

  • In a retrospective study of transgender people in care at 13 clinics across the country, transgender people were as likely as nontransgender people (often known as cisgender people) to be retained in care, to be prescribed ART, and to have achieved viral suppression (69% for transgender people, 70% for nontransgender men, and 63% for nontransgender women). However, the generalizability of this study is inconclusive, because the analysis was limited to people receiving longitudinal HIV care in research settings

Several studies suggest that transgender people, including transgender women, achieve ART adherence and viral suppression at lower rates than other groups.

  • In one study, the proportion of people taking ART was significantly lower between transgender women and nontransgender participants (59% vs. 82%) in a small but geographically diverse sample.11
  • A comparison of HIV treatment outcomes between transgender women and MSM in New York City found that transgender women were less likely than MSM to achieve viral suppression at 1-year follow up.12
  • Among people receiving Ryan White–funded HIV care, transgender patients were less likely to achieve viral suppression compared to the national average (74% vs. 81%) despite similar levels of retention in care.13

Some transgender women may have concerns about interactions between hormone therapy and ART, which could affect their adherence to ART and viral suppression. Of the six first-line antiretroviral regimens recommended for HIV treatment in the Department of Health and Human Services Guidelines,14 at least three have no known or predicted interactions with estrogens (tenofovir/emtricitabine and dolutegravir, tenofovir/emtricitabine and raltegravir, and abacavir/lamivudine/dolutegravir). Thus, in nearly all cases, providers can identify an antiretroviral regimen that will not affect hormone therapy, enabling both effective HIV therapy and estrogen and anti-androgen treatments. Estrogen levels can also be monitored during ART to confirm the lack of interaction.

 

Summary of Actions for Health Care Providers
Summary of Actions for Health Care Providers

To improve outcomes across the HIV Care Continuum, Providers Can:

1 Use the HIV continuum as a framework to build goals and benchmarks, and to identify areas for health outcome improvement among patients.
2 Encourage the whole health care team to participate in training on creating a welcoming and patient-centered environment.
3 Consider colocating services relevant to local transgender people, such as hormones therapies, HIV testing, and social services (when feasible).
4 Update forms for data collection and tracking gender, preferred name, and preferred pronouns.
5 Participate in National Transgender HIV Testing Day on April 18, which offers toolkits and educational materials designed specifically to increase testing among transgender people.
6 Offer HIV testing to all patients, including transgender women.
7 Assess the unique needs and requests of transgender patients to provide a “good fit” for linking to care and supportive services.
8 Consider creating care plans that incorporate all the health concerns of transgender women.
9 Identify ART regimens that will not affect hormonal therapy.

For More Information

  1. Santos GM, Wilson EC, Rapues J, Macias O, Packer T, Raymond HF. HIV treatment cascade among transgender women in a San Francisco respondent driven sampling study. Sex Transm Infect. 2014 Aug;90(5):430-3.
  2. Grant J, Mottet LA, Tanis J, Harrison J, Herman JL, Keisling M. Injustice at every turn: a report of the National Transgender Discrimination Survey [Internet]. Washington, DC: National Center for Transgender Equality and National Gay and Lesbian Task Force. 2011. [cited 2016 Aug 29]. 220 p.
  3. Machtinger EL, Haberer JE, Wilson TC, Weiss DS. Recent trauma is associated with antiretroviral failure and HIV transmission risk behavior among HIV-positive women and female-identified transgenders. AIDS Behav. 2012 Nov;16(8):2160-70.
  4. Houston Area Ryan White Planning Council. Access to HIV care among transgender and gender non-conforming people in Houston [Internet]. Houston, TX: Houston Area Ryan White Planning Council. 2013. [cited 2016 Aug 30]. Available from: http://www.rwpchouston.org/Publications/TG%20Special%20Study%20Report%20APPROVED%2003-14-13.pdfpdf iconexternal icon
  5. Sevelius JM, Patouhas E, Keatley JG, Johnson MO. Barriers and facilitators to engagement and retention in care among transgender women living with human immunodeficiency virus. Ann Behav Med. 2014 Feb;47(1):5-16
  6. National Academy . The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington, DC: The National Academies Press; 2011.
  7. Healthy People 2020. Lesbian, gay, bisexual, and transgender health. U.S. Department of Health and Human Services. Available from: http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=25external icon.
  8. Tripathi A, Youmans E, Gibson JJ, Duffus WA. The impact of retention in early HIV medical care on viro-immunological parameters and survival: a statewide study. AIDS Res Hum Retroviruses. 2011;27(7):751-8.
  9. Giordano TP. Retention in HIV care: what the clinician needs to know. Top Antivir Med. 2011;19(1):12-6.
  10. Mizuno Y, Zhu J, Crepaz N, Beer L, Purcell DW, Johnson CH, Valverde EE, Skarbinski J. Receipt of HIV/STD prevention counseling by HIV-infected adults receiving medical care in the United States. AIDS. 2014;28(3):407-15.
  11. Melendez RM, Exner TA, Erhardt AA, Dodge B, Remien RH, Rotheram-Borus MJ, Lightfoot M, Hong Dl. Health and health care among male-to-female transgender persons who are HIV positive. Am J Pub Health. 2006 Jun;96(6):1034-7.
  12. Wiewel EW, Torian V, Merchant P, Braunstein SL, Shepard CW. HIV diagnoses and care among transgender persons and comparison with men who have sex with men: New York City, 2006–2011. Am J Pub Health. 2016 Mar;106(3):497-502.
  13. Health Resources & Services Administration. Ryan White HIV/AIDS Program Annual Client-Level Data Report 2014 [Internet]. Rockville, MD: Health Resources & Services Administration. 2015. [cited 2016 Aug 29]. 62 p.
  14. U.S. Department of Health & Human Services. Guidelines for the use of antiretroviral agents in HIV-1 infected adults and adolescents [Internet]. Washington, DC: U.S. Department of Health & Human Services. 2016. [cited 2016 Aug 29]. 22 p. Available from: https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-treatment-guidelines/0external icon.