The flow chart below (Figure 1) shows participation in the AGYW cohort at baseline and after 12 months (2017-2018).
A total of about 100 interviews with implementing partners, young people, and key stakeholders were conducted, and 19 group discussions including two natural group discussions (total n=112 participants) were conducted with the community, in 2017.
Implementation of PrEP for young female-sex workers in a rural community
- Introduction of PrEP
PrEP was introduced in July 2016 to uMkhanyakude district as a new intervention targeting young FSW through the DREAMS partnership. PrEP was provided by an organisation which was experienced in delivering sex work interventions but new to this rural setting. The implementer conducted a situational analysis of the area to identify ‘hot-spots’ and started enrolling clients for PrEP in August 2016 from these sites; actual PrEP roll-out began in November 2016. For the DREAMS programme, the implementer’s target was to reach approximately 100 AGYW aged 18-24 years who self-identified as sex workers and met the criteria on the PrEP screening tool (including HIV risk assessment, screening and testing), in the two year period that DREAMS was rolled-out.
Challenges of delivering PrEP
Initially, the sex worker programme was not well-received by community gatekeepers and owners of bars/taverns, who did not want to be associated with the programme. Implementers described difficulties in engaging young sex workers in long-term PrEP or HIV related-care given that sex workers were highly mobile, constantly changing their identity i.e names and contact details and did not see HIV treatment and prevention as a priority:
“Yes, it happens, someone gets lost, many of them. When they get lost they sometimes say why are you bothered with me because I am not sick? Just leave me alone I will take treatment when I get HIV. It happens a lot.” (Professional Nurse)
A key obstacle to programme implementation was the very tight target age and gender eligibility criteria set by funders (females aged 18-24). FSWs who were underage, or over 24 (the majority), were often eligible for PrEP based on the PrEP screening tool but did not meet the funders’ age criteria. Implementers struggled to recruit eligible FSW aged 18-24 as they were either not interested or did not self-identify as sex workers. In practice the implementers also engaged with FSWs aged over 24 years.
Facilitators of delivering PrEP
The use of peer workers (former and current sex workers) for recruitment and follow-up helped start-up and continuity of the programme in the study area because “they understand the language spoken by sex workers, another sex worker knows how they greet each other” (Professional nurse) and they could identify with the sex workers. Implementers described that sex workers were initially not sure of the programme and hesitated to join but they would later reconsider. Mobile services were available and reached the sex workers where they were and offered them education and services without a long wait time at clinics. One of the HIV counsellors highlighted that this resulted in an increase in treatment of sexually transmitted infections and suppressed HIV viral loads.
- Uptake of PrEP at a population level for young women who exchange sex for money and transactional sex
Table 1 below shows the characteristics of the AGYW at baseline. The majority of the AGYW were from the rural (64.1%) areas, most still currently in school (75.3%) and about a fifth (18.5%) having migrated before. Among the 2184 AGYW in the nested cohort, HIV testing in the last 12 months increased from 45.0% (95%CI:42.9-47.1%) in 2017 to 53.5% (95%CI:51.3-55.8%) in 2018 (p<0.001), while condom use at last sex among the 965 sexually active AGYW did not (53.7%; 95%CI:50.3-54.0% in 2017 vs. 55.1%; 95%CI:51.6-58.6% in 2018, p=0.559).
Characteristic
|
N
|
% (95%CI)
|
Age group
|
|
|
13-17
|
1148
|
52.6 (50.5-54.7)
|
18-22
|
1036
|
47.4 (45.3-49.5)
|
Location
|
|
|
Rural
|
1388
|
64.1 (62.1-66.1)
|
Peri-urban
|
660
|
30.5 (28.6–32.5)
|
Urban
|
117
|
5.4 (4.5-6.4)
|
Currently in school (Yes)
|
1644
|
75.3 (73.4-77.0)
|
Socio-economic status
|
|
|
Low
|
727
|
35.1 (33.0-37.1)
|
Middle
|
747
|
36.0 (34.0–38.1)
|
High
|
600
|
28.9 (27.0-30.9)
|
Ever migrated in the past years* (Yes)
|
403
|
18.5 (16.9-20.1)
|
Food insecurity (Yes)
|
682
|
31.2 (29.3-33.2)
|
*Defined as moving away from the surveillance area and subsequently returning
Table 1. Characteristics of AGYW at baseline in 2017 (N=2184)
PrEP awareness increased from 2.0% (95%CI:1.5-2.7%) in 2017 to 9.0% (95%CI: 7.3-9.8%) in 2018 in all AGYW, a substantively small but statistically significant increase (p<0.001). About a tenth of sexually-active AGYW, 13.4% (95%CI:11.4-15.7%) reported transactional sex and 10.6% (95%CI:8.8-12.7%) sex for money.
A total of 194 AGYW reported either transactional sex or sex for money and were therefore PrEP-eligible (Figure 2). Of these, n=166 85.6% (95%CI:79.8-89.9%) knew their HIV status and of these, n=113 68.1% (95%CI:60.5-74.8%) were HIV negative. Only n=12 10.6% (95%CI:6.08-17.9%) were aware of PrEP, but none had used PrEP.
Figure 2 below shows the HIV prevention cascade for PrEP-eligible AGYW from 2017-2018
Figure 2: PrEP utilization cascade among eligible AGYW involved in transactional sex/sex work in 2017-2018 (n=194)
- Community and young people’s awareness, demand and perceptions of PrEP uptake
Availability: Awareness of PrEP
PrEP was available and implemented in this area through a peer-delievered sex worker programme to self-identifying FSW. Respondents in qualitative interviews, who did not self-identify as FSW, were generally unaware of and lacked information about PrEP. Some young people indicated it was their first time to hear about PrEP and could not attach meaning to the term since they did not have an isiZulu word for it. Lack of awareness was heightened by PrEP not being available through public-sector health clinics. Most older community members – including community health champions such as community caregivers (CCGs) – were also not aware of PrEP, with some people confusing it with post-exposure prophylaxis (PEP). However, respondents said there was a lot of sex work in the community and some identified FSW hot-spots.
Acceptability: Demand and perceived benefit of PrEP
Whilst generally unaware of PrEP, many respondents could imagine it would benefit young people, often because it could be an alternative to condoms. Condoms were generally seen by young people as unacceptable both for HIV prevention and contraception, as it resulted in “killing your babies” or “eating sweets in a wrapping paper” (group discussion young men). One young person indicated that PrEP would probably be more helpful than condoms because people do not like wearing condoms, but with PrEP “it will be in their system” and hence more likely to be effective as it does not obstruct sex. PrEP was seen by young people as an option for men who were scared of HIV and did not like condoms. Older community members liked PrEP because even though they provided condoms to young family members, they could not guarantee whether the condoms were being used; in contrast PrEP is taken orally and seen to be easier to use than condoms. Staff at FSW clinics reported that PrEP had only minor side-effects and so FSWs were able to adhere to it, as confirmed by drug-level blood tests. However, teachers and other healthcare providers were more ambivalent about PrEP. While acknowledging PrEP’s effectiveness and usefulness for young people who were “rushing to have sex”, they worried it would lower personal responsibility for sexual health and lead to unprotected sex, promiscuity and increases in already high teenage pregnancy rates.
The perceived benefits of PrEP were strongly gendered. Most young people thought PrEP would be more beneficial to boys or young men than girls or women because men were believed to “love sex more than women” and had multiple partners. Further, PrEP was seen to help keep circumcised men negative for a longer time as they were worried about the 40% residual risk not covered by medical circumcision:
“since the availability of PrEP, we have discovered that those who are circumcised are negative…that is why they say they do not want to be on risk and request PrEP” (Professional nurse)
Similarly, an implementing partner from another organisation indicated that PrEP was mainly beneficial for boys because their alcohol use could result in them engaging in unsafe sex. However, some young people thought girls would have greater access to PrEP because they are more likely to go to the clinic for other reasons, while boys associate clinics with sick people so they would not uptake PrEP from healthcare facilities.
PrEP was seen as giving hope to people who are in discordant relationships indicating that someone’s HIV status would not need to be a barrier in forming or remaining in sexual relationships:
“I think it is a good thing because those who are in relationships with older people who are infected, they can be able to get treatment beside leaving him because of his HIV status.” (Young person)
Also, young people thought PrEP would benefit women in long-distance relationships with their husbands as “they cannot be certain of their husbands” other relationships while away from home.
Affordability: Financial and social cost of taking PrEP
The organisation that delivered PrEP used a peer outreach approach with a mobile unit to ‘get the clients where they are’, with peer educators mobilizing and recruiting from taverns and bars. This approach assisted with recruitment as sex workers felt less stigmatised or fearful of being identified. This approach meant FSW incurred little or no transport costs to access PrEP. Further, the mobile unit offered a range of services free of charge, including syndromic screening and treatment of sexually transmitted infections and tuberculosis, HIV testing, ART and PrEP.
However, several social barriers were highlighted for uptake of PrEP. One challenge was stigma as a barrier to HIV testing, the entry point for PrEP:
“I think that the reason that prevent people from testing is that this disease [HIV] was introduced badly, that if you are suffering from it you are sleeping with many people so that can lead to people not wanting to test and your peers will talk behind your back.” (interview with CCGs)
Moreover, clinics were seen as stigmatised spaces, places for “gossip” and associated with being HIV-positive, suggesting PrEP delivery to young people through primary health care clinics would be difficult.
Another challenge for PrEP delivery was that some young people were “ashamed of taking pills” and would not use them until “the situation forces” it, i.e., when they get sick. Pill-taking in this setting is associated with being unhealthy, especially in the context of high HIV prevalence. Furthermore, women felt they could not take PrEP for occasional sexual enounters as they were often not in regular partnerships and therefore not having regular sex. Lack of information on PrEP availability, effectiveness and side-effects created ambivalence in some young respondents, “because we don’t have a guarantee of 100% that this thing works.”