Socio-demographics and HIV prevalence
3 formative FGDs happened with 26 women over 3 dates. A short demographic survey was collected at one of the FGDs, where there were 12 participants with an average age of 36.7 years (SD=±7.9) and age range from 29 to 49. Half of the FGD participants identified as trans-female, 4 identified as cis-female, and 2 did not answer. Most participants were African American and almost all were from Washington, D.C.
Among the 32 participants of the IDIs, all identified as African American and were aged 21 to 54 years (Table I). Nearly half of them identified as trans female (n=13) while all others identified as cis female (n=19). The majority (n=23) lived in D.C. and from those, 12 were from the Northeast quadrant. Many participants described either having achieved a high school diploma/GED or higher degree (n=13) or had degrees beyond high school (n=11). 10 reported having children. Over 2/3 (n=21) conveyed that sex work was their primary form of income. Of the 25 participants who responded to the question of whether they travel for sex work, about half reported to do so (n=11), with New York and New Jersey being the most cited destinations.
23 participants affirmed the use of an illegal substance in the past 12 months, with the top being crack cocaine (n=13) and cannabis (n=10).Among the 29 participants who revealed their HIV status, a third (n=10) reported being HIV-positive, while 3 did not feel comfortable sharing.
PrEP knowledge and access
There were evident gaps in knowledge of PrEP in the initial FGDs. During one FGD, some participants insisted the pill was blue, while others claimed it was purple. There was also a discussion about the name Truvada [emtricitabine/tenofovir disoproxil fumarate] and its relation to PrEP. Participants displayed confusion when explaining Truvada to one another. One participant stated:
“There are 2 kinds of Truvada. Some for HIV patients, and some stuff so you don’t
get HIV” (FGD III).
Women on antiretroviral treatment (ART) explained that Truvada was also a drug for HIV treatment. In another FGD, a debate took place over which type of person, HIV positive or negative, was eligible for PrEP. They concluded that PrEP was only for those that tested HIV negative.
Less than half of IDI participants (n=14) said they had heard of PrEP, and among those who had heard it, only one had tried to obtain it. Several participants mentioned that even though they had heard of PrEP, they were unsure how it was used and whether they were eligible. The following quotes exemplify interview participants’ typical experiences with PrEP:
“Somebody talked about it one time but I really never. I’ve heard of it before but I’m not really familiar with everything about it” (cis woman, age 44).
“I’ve just seen it on a bus, but I never got any information, and I want to know about it more... I’ve seen the advertisement, but I haven’t done any research on it, and I want to get some more information about it” (trans woman, age 34).
Several interview participants asked how PrEP would be paid for and voiced concerns about potential side effects. Participants reacted positively when interviewers informed them there are few side effects and the cost would be covered by the D.C. government. By the end of the interview, most participants voiced interest in either obtaining more information or enrolling in a PrEP program. Some indicated they would seek PrEP “just to be safe” (cis woman, 21 years old). Others compared PrEP to other HIV prevention methods, asking questions that compared PrEP’s purpose to that of a condom. One participant equated taking PrEP to taking a vitamin:
“It would be like taking a vitamin every day” (cis woman, 42 years old).
Communication with physicians on PrEP and sex work
In Washington, D.C., the government provides the Health Care Alliance Program, which offers medical assistance to those not eligible for Medicare or Medicaid (and who do not have other health insurance) 28. With health insurance available to all District residents, this study focused on communication with physicians rather than access to medical care.
One FGD ended with a dialogue surrounding whether PrEP was brought up in conversation with their physicians. Some participants claimed that to obtain a PrEP prescription they had to tell their physician that their partner was HIV-positive. Others reported they will ask their physician about PrEP in the future, stating:
“I am very secure with my doctor” (FGD III).
Details about communication with healthcare providers about sex work surfaced during the IDIs. Approximately half the individuals disclosed their involvement in sex work to their primary physician or a medical provider when prompted by sexual health questions.
“They’ll ask you when doing your physical. That is one of the questions and it’s best that you be honest because when they examine you so they can know what type of test to give you…If you don’t tell them then they’re not going to know what to look for in case something’s wrong with you so it’s best to be as truthful as possible” (cis woman, age 49).
On the other hand, several individuals indicated that engaging in sex work is a personal matter that need not be shared with medical providers:
“…but it’s never nobody’s personal business for me just to come out and say, ‘I’m a sex worker, this and that’” (trans woman, age 23).
Several individuals who had not disclosed to their physician further indicated that they would only disclose their involvement in sex work if there was a problem with their sexual health:
“If something comes from my nightlife that comes up, then yes, I will let my doctor know, but until then, don’t ask, don’t tell” (trans woman, age 26).
A couple of individuals indicated not disclosing to their medical providers, since the conversation about sex work has never occurred. One individual indicated they do not disclose to medical providers because of the shame associated with sex work:
“It’s hard. I mean, I’m out here doing it, but I’m ashamed. I’m ashamed” (trans woman, age 37).
When asked, several individuals reported they would feel more comfortable disclosing involvement in sex work to a healthcare provider if they had received sex work cultural competency training.
Preferred HIV testing settings
In the FGDs, many participants claimed a physician’s office or mobile clinic is more trustworthy than at-home testing results. One participant explained:
“It’s better when you go to a doctor and let them just do it. A lot of times [the kits are] not as accurate. They say 99.9... A lot of times that kit ain't even right” (FGD II).
Participants also expressed concerns that at-home tests lack the opportunity to immediately discuss the next steps if it is positive. One participant advocated that at-home tests be pulled from shelves entirely given the severe anxiety they could induce in an unsupportive setting with no information on next steps. Some participants expressed their preference for a physician’s office due to increased space and comfort. One participant affirmed preferring “a nice room size space to be tested instead of some small, cramped room because we are already uncomfortable” (FGD II).
All IDI participants except one reported having been tested for HIV at least once, and most also reported having hepatitis C (HCV) and other STI testing, indicating a robust coverage of HIV/HCV/STI screening in Washington, D.C. The testing was usually done during their annual physical examinations at a hospital with a primary care physician (PCP), in a clinic, or through free health screening services. Several individuals also indicated that the last time they were tested for HIV was while incarcerated. No individual reported having done at-home testing for HIV or STIs. Individuals who reported having been tested for HIV or an STI indicated that an oral swab, finger prick or blood draw, or urine (for STIs only) were the testing methods used, with most individuals having experienced at least 2 methods.
While some interview participants reported being open to self-administered tests “If it was all the same results” (cis woman, age 35), the majority said they would prefer being tested by a health professional in a physician’s office or mobile clinic. Reasons for this included perceived increased accuracy and if applicable, the benefit of having a physician available to explain the next steps.
“To me, it’s more safer. It’s accurate, and he can tell you, if you’re sick, what would be the next step” (trans woman, age 37).
Another woman explained:
“I wouldn’t want to do it myself because if you do anything wrong you may miss something. You want this done as professional as possible” (cis woman, age 49).
Between the choice of a physician’s office versus mobile clinics, a few women reported during the interviews that they preferred testing in a physician’s office over in a mobile clinic due to privacy reasons. However, one woman reported she would rather get tested in a mobile clinic than in a physician’s office due to convenience:
“It is easier if you come to me” (cis woman, age 42).
FSWs expressed that more people would utilize testing services if incentives like gift cards were involved. One participant posed that if such incentives were missing, at-home testing kits paid for by Medicare and Medicaid could be more appealing.
Preferred HIV testing method
Among the IDI participants reporting their preferred testing method for HIV testing, about half preferred a blood test while the other half preferred the oral swab. Those who preferred the oral swab denoted doing so because they do not like needles; one individual indicated the finger prick makes their finger sore. Most individuals who preferred the blood test did not identify why, except one who specified trusting blood test results more than those of oral swabs. Preferred methods for STI testing were also discussed in the FGDs, with a few participants having unfavorable views towards the pap smear, as they preferred not undressing for testing and stated they would prefer a blood test.