New York clinic outlines how to improve uptake of PrEP by transgender people

Dedicated efforts are needed to engage transgender men and women with clinical services and to encourage them to use pre-exposure prophylaxis (PrEP), Asa Radix of the Callen-Lorde Community Health Center in New York told the recent 21st International AIDS Conference (AIDS 2016) in Durban, South Africa.

The need to prevent HIV infections and improve the health of transgender men and women is urgent. Globally, it is estimated that trans women have an HIV prevalence of 19%, which is 49 times higher than that of the general population. In high-income countries the prevalence is estimated to be 22%, with the highest rate among trans women of colour. There are very few data on trans men.

Callen-Lorde is the largest specialist provider of health services for lesbian, gay, bisexual and trans people in New York. It has over 15,000 clients, including 3095 trans men and women. Over half of trans clients are black or Latino, one third do not have health insurance and 15% are homeless or unstably housed.

Demand for PrEP has been high, with a lot of new clients attending for this purpose. However, uptake by transgender clients was slow to develop.  

In the last two years, Callen-Lorde has gone from having only one or two transgender people starting PrEP each month to around 15 trans people enrolling each month. Now, of the 2324 individuals who have ever received PrEP from the centre, 195 are transgender. Asa Radix set out to explain how the clinic had managed to achieve this.

Barriers to PrEP uptake that are specific to this community include a dearth of PrEP marketing materials that are trans-inclusive, concerns about potential interactions between PrEP and hormonal therapies, and a mistrust of medicine, due to individuals’ experiences of providers who are hostile or uninformed about transgender people’s needs.

Over half of the trans people taking PrEP are under the age of 30. Two-thirds of those taking PrEP are trans women (individuals assigned a male gender at birth and now identifying as female), with only 16% being trans men (individuals assigned a female gender at birth and now identifying as male). A further 17% are gender non-conforming and this group were mostly assigned a male gender at birth.

Asa Radix said that it was vital to create a safe and supportive environment. The registration forms and electronic patient records at the clinic have been redesigned to be trans-inclusive. They can accommodate differences between the sex an individual was assigned at birth, the sex listed on their health insurance documents and the gender the person currently identifies with. Patients are asked to specify the name and pronoun they would like to be used.

“Many people underestimate how very difficult it is when you come into a health centre and you are being mis-gendered,” said Asa Radix. “Calling people by a gender they don’t identify with, or using Ma’am or Sir incorrectly, can be incredibly uncomfortable for people.”

An emphasis is put on respecting privacy and confidentiality. Staff at the in-house pharmacy are familiar with trans issues. At commercial pharmacies, staff may be disconcerted by apparent discrepancies between a person’s official documents and their current gender identity.

Trans-identified staff have been recruited, are visible to clients, and have been involved in developing clinic policies. A community advisory board allows trans advocates and service users to provide input.

Images of trans people are included in PrEP brochures, PrEP videos, and the clinic’s website. Many of these resources had to be developed specifically by Callen-Lorde. PrEP materials are prominently displayed in the clinic.

PrEP has been promoted at a wide range of outreach activities, community events and forums. Staff have been instructed to discuss PrEP at every clinical encounter. It was necessary to raise rates of screening for HIV and sexually transmitted infections (STIs), as PrEP is more likely to be proposed following such testing. As some clients find physical examinations uncomfortable, self-swabbing kits for STIs have been offered and have had a dramatic impact on the uptake of STI screening. Self-swabbing also reduces the burden on clinical staff.

Dedicated staff help clients with health insurance and coverage issues. This kind of support has been important for a wide range of clients seeking PrEP, including trans people.

Uninsured patients have to be linked to medication assistance programs or low/no cost health insurance plans. Clients with health insurance may still encounter challenges due to high co-payments, insurance denials and requirements to have drugs delivered by mail (difficult for people who are homeless). Medical staff have needed to be trained on these issues.

Following the presentation, an audience member asked if focusing on PrEP for trans people was an “easy way out” of not dealing with underlying factors that make people vulnerable to HIV, such as poverty, homelessness and sex work. Tonia Poteat of the Johns Hopkins Bloomberg School of Public Health responded that there won’t be good engagement with PrEP unless these issues are addressed first.