PrEP Provider Toolkit

Transgender women—those who were assigned male at birth and who identity as female—are disproportionately affected by the HIV epidemic in the U.S. Between 2009 and 2014, an estimated 1,974 transgender women were diagnosed with HIV in the U.S., representing 84% of transgender people diagnosed. Racial and ethnic minority transgender women bear a higher burden of HIV compared to White transgender women. In the U.S., an estimated 44% of Black transgender women and 26% of Hispanic/Latina transgender women are living with HIV compared to 7% of White transgender women. Barriers to PrEP uptake among transgender women fall along multiple socio-ecological levels. Individual-level barriers may include low PrEP awareness and knowledge, past experiences of violence, uncertainty about health insurance coverage and associated health costs, concerns about side effects, possible hormone interactions, past negative healthcare experiences, and self-perception of being at low risk for HIV infection.

Some examples of interpersonal-level barriers include lack of support of cisgender male partners for PrEP, and medical mistrust due to experiences of transphobia. Structural-level barriers include lack of trans-inclusive PrEP marketing, lack of integration of PrEP services into feminizing hormone therapy (FHT) and gender affirming care, and social marginalization (lack of adequate employment and stable housing). Experiences of social marginalization because of gender, class, race, sexual identity, poverty, and the intersection of these identities and experiences may contribute to increased vulnerability to HIV infection among Black and Hispanic/Latina transgender women. Although several studies have investigated barriers and facilitators to PrEP uptake among transgender women, there is a dearth of research on multilevel barriers to PrEP uptake and adherence specifically among Black and Hispanic/Latinx transgender women.

In the United States, Black men who have sex with men (BMSM) are the most affected by HIV and are diagnosed at a rate of 6.0 times higher than white MSM. Awareness and uptake of PrEP are lowest among this community. Latino MSM are another group that is critically affected by HIV and account for 85% of all new HIV diagnoses among Latino males. Like BMSM, barriers like cost and lack of insurance, concerns about side effects, societal or contextual factors such as racism and homophobia and HIV/AIDS conspiracy beliefs are barriers preventing Latino MSM from accessing PrEP.

Youth continue to be a population impacted by higher rates of HIV. In 2019, 21% of new HIV diagnoses were among young people aged 13-24, and most of these cases are among Black and Latino youth. PrEP uptake among racial and ethnic minority adolescents has been slow due to lack of awareness of PrEP, behavioral factors, and legal and financial barriers to adolescents seeking sexual and reproductive health care.

Indian/Alaska Native adults and adolescents increased. Access to PrEP and PEP in American Indian and Alaska Native (AI/AN) communities can be limited and there are cultural and historical considerations that impact Tribal communities’ ability to adopt PrEP, and social and systematic considerations that also present challenges.

According to the CDC, Asian Americans who make up only 6 percent of the U.S. population, make up 2 percent of all HIV infections. The CDC suggests this disparity is so great due to cultural factors, such as language barriers and immigration issues that create barriers to accessing healthcare (though this only addresses access to care for Asian immigrants, not Asian Americans who have lived in the U.S. for generations.) Low PrEP utilization rates among the Asian/Pacific Islander communities could be because of lack of awareness about the medication, misconceptions regarding its affordability, misinformation about its effects and fear of community stigma about sex.

HIV incidence is high among people who use drugs and are unhoused across the U.S. This is fueled by the opioid epidemic, lack of affordable housing, socioeconomic marginalization, and other complex factors. Despite this, PrEP is largely under-utilized among this vulnerable population.

Some of the low PrEP uptake can be attributed to practical barriers, such as competing health and survival needs, and medications being lost or stolen due to being unhoused and without a safe place to store medications. However, there is also a pervasive belief among clinicians that people who use drugs who are unhoused are not good candidates for PrEP. This idea is likely due to overlapping stigmas and isn’t supported by data.

Medical Mistrust is “an absence of trust that health care providers and organizations genuinely care for patients’ interests, are honest, practice confidentiality, and have the competence to produce the best possible results.”

The Origins of Medical Mistrust

Research indicates that Medical Mistrust is rooted in the history of mistreatment, discrimination, and abuse perpetrated against Black and brown bodies, sexual and gender diverse people, and other marginalized groups by both the State and the medical establishment. In addition, contemporary experiences of discrimination in health such as inequities in access to medical insurance, health care facilities, and treatments along with institutional practices that make it difficult for marginalized communities to access quality health care also play a significant role in shaping Medical Mistrust particularly among Black and other patients of color. Studies that have explored healthcare experiences among different populations have identified a significant association between race and medical mistrust such that Black Americans are significantly more likely than White Americans to mistrust healthcare personnel and the medical system as a whole.

The Impact of Medical Mistrust

• Trust in health care among Americans has declined in recent decades
• Mistrust may prevent people from seeking care
• Black Americans are more likely than whites to say they do not trust their medical provider
• People who say they mistrust health care organizations are less likely to take medical advice, keep follow-up appointments, or fill prescriptions
• People who say they mistrust health care systems are more likely to report being in poor health

Talking with Patients about Medical Mistrust – How to Have Those Conversations

In the U.S., trust in the health care system is extremely low. Reversing medical mistrust is integral to building and strengthening patient-provider relationships. Health care professionals should assume patient mistrust and take the appropriate steps to address it.

Effective ways to communicate with patients about Medical Mistrust

1. Openly discuss mistrust with patients
2. Talk with, not at patients
3. Partner with patients in making decisions about their health care

Medical mistrust has been identified as a primary driver of racial and ethnic inequities in health outcomes in the U.S. Among Black individuals, medical mistrust stems from experiences with discrimination in healthcare and is the result of persistent social inequity and structural racism, both contemporary and historical. Regarding PrEP use, several studies have identified medical mistrust as a barrier to uptake among Black individuals. Studies that have explored healthcare experiences among different populations have identified a significant association between race and medical mistrust such that Black Americans are significantly more likely than White Americans to mistrust healthcare personnel and the medical system as a whole.

Medical mistrust is a major barrier to a strong patient-clinician relationship. Patient mistrust in health care clinicians and in the health care system generally, negatively influences patient behavior and health outcomes.

Furthermore, the staff of healthcare organizations do not reflect the face of the communities they serve. Numerous studies have shown that increased provider diversity is associated with improved healthcare quality. Concordant care, defined as a patient and provider sharing a common attribute such as race, ethnicity, or gender, has been associated with improved quality of care. According to the Association of American Medical Colleges, only about 36% of active physicians are female, and only about 5% of physicians identify as Black or African-American, despite this group making up 13% of the U.S. population. Fewer than 6% of physicians identify as Hispanic, despite Hispanics making up about 19% of the U.S. population. However, 28% of physicians and surgeons in the United States are immigrants, with doctors from India and China making up the largest groups. This speaks to issues of systemic oppression: People from minority groups that have been oppressed for generations in the United States are less represented as physicians than are immigrants of color. There is a long history related to how we have gotten here. Since Abraham Flexner’s review of the American medical education system in 1910, it was believed that there was a limited role for Black physicians in the medical community and that Black physicians possessed less potential and ability than their White counterparts. The result of this characterization led to the closure of five of seven African American medical schools. The impact is still felt today.

Social determinants of health, the conditions in environments where people live, drive inequities, HIV acquisition and the use of PrEP among BIPOC. These social determinants include, among others, economic stability, access to quality education, and access to quality healthcare.

The uptake of PrEP has been shown to be impacted by unmet social determinants of health (SDOH) needs. These include basic needs (e.g., food, shelter, water), health/social service needs (e.g., healthcare), and economic needs (e.g., money for savings). Socioeconomic factors identified to affect PrEP uptake included lack of insurance, difficult access to transportation, and inflexible work situations. Individuals with more unmet SDOH needs may have other priorities that divert their focus from obtaining preventative health services.

There are multiple socioeconomic factors to consider when looking at the barriers to PrEP uptake among disproportionately impacted communities at both the individual-level and structural-level barriers. Individual-level barriers to PrEP uptake include low PrEP awareness and knowledge, past experiences of violence, uncertainty about health insurance coverage and associated health costs, concerns about side effects, possible hormone interactions, past negative healthcare experiences, and self-perception of being at low risk for HIV infection.

3. Create a safe & welcoming clinic
• Staff Diversity
1. Actively engage clinic leadership to champion Diversity, Equity, Inclusion and Anti-Racism efforts.
2. Hire and retain staff that reflect the patient population, especially clinicians
3. Encourage clinic leadership (including Human Resources) to adopt workplace policies, procedures, and compensation rates that foster retention of a culturally concordant workforce.
4. Speak with staff and conduct quarterly trainings on cultural responsiveness.
• Have inclusive imagery and signs visible.
• Have BIPOC-centric brochures & magazines in waiting areas
• Post a Diversity & Inclusion statement in a conspicuous location

4. Bringing them back to care
• Before the patient leaves the visit:
1. Confirm the best form of future contact
2. If you have a portal, make sure that it is on their mobile phone
3. Ask them to send you a Test Message
4. Introduce them to the person(s) who may follow-up
• Patients, clients, customers may come once, but maybe not again
• Look at your client-level data and see if your BIPOC clients are coming back for their appointments
• It’s probably not them … It may just be you (and/or your staff)
1. Conduct an anonymous survey of patients
2. Be committed to receiving feedback and change
3. Reiterate that you are committed to their success
4. Ask for a verbal report card before the patient leaves