Of the total 59 FSW participants, 42 belonged to the urban setting while the rest belonged to the rural setting. The mean age of the FSWs in both urban and rural settings was similar (35.7 years, SD = 8.8). The data was analyzed thematically to capture willingness to use oral PrEP and understand the dynamics of the various factors that affect the usage, acceptance, and adherence of PrEP among a high-risk HIV group, the FSWs, in various parts of India.
All the FSWs from both the settings reported experiencing coercive sex which involuntarily brought out the risk of condom-less sex. Figure 1 depicts the analytical framework. Several other situations also led to condom-less sex. The main emerging theme in this study was ‘condom-less sex’ which led to the theme of ‘oral PrEP is a felt need’. This theme encompassed issues such as female-controlled options, an alternative to male condom, long-term protection, easy to use and economically viable option. As PrEP is not rolled out in India, respondents expressed the testing of PrEP before actual usage. Therefore, 'building confidence in product' was another emerging theme for acceptance. Influencers for PrEP acceptance and usage emerged as barriers and facilitators for PrEP usage among the FSW population. However, the reiterative readings helped in identifying the characteristics and issues that would lead to acceptance of oral PrEP under the theme 'expected product characteristics'. This theme covered the issues of ease of use, ensuring privacy and positioning PrEP in a way to maintain confidentiality. Experiences of antiretroviral therapy and their job profile threw light on both acceptance and adherence issues. ‘Adherence’ was another theme in the study.
The major themes that emerged from the study were: 1) Condom-less sex, 2) Oral PrEP is a felt need, 3) Building confidence in the product, 4) Expected product characteristics, 5) Barriers to acceptance, and 6) Adherence to oral PrEP.
Condom-less sex
While explaining their work, FSWs shared about their vulnerability. Commenting on the lack of protection policy for their population, they narrated incidences of coercive sex and situations where they would end up having condomless sex. FGD participants unanimously reported that like any other woman, they too faced resistance to condom use in regular partner settings. ‘Suspicion’ because of condom use; an emphatic ‘no’ to condom use by the partner; ‘confidence on fidelity’ - were the phrases used by FSWs to explain condom-less sex in certain types of relationships. FSWs stressed that livelihood needs itself brought vulnerability. An SBSW from Pune narrated the situation where being aware of the risk did not necessarily result in the practice of using a condom:
“Why I am saying? I may tell you, women come for housemaid work at = Name of a locality= [and] go by doing [sex] work. Now I came to you for work [/maid work/] but that owner likes me. If the female owner went outside, then, he takes that maidservant to the bed [for sex]. Is there a condom [available that time]?” [Urban SBSW, 01-10-13, Pune, MH]
The universal nature of the risk was apparent at all the settings. Violence and getting caught in the exploiting situations where FSWs were forced to provide services to multiple people, were reported at all the sites in both rural and urban areas.
“There is more risk for those involved in sex work in slum areas. If they are caught by rowdies, nothing can be done” [Urban BK, 05-60-16, Chennai, TN].
Similarly, an FGD participant from the same city reported:
“Some person [/client/] will call us and ask us to have sex in the nearby bushes. When we go, we see there, then there will be 6 to 7 people. It is very much difficult to handle the situation, and cannot use a condom with all of them!” [Urban FGD, FSW-4, Chennai, TN].
FSWs seemed to be living in fear. In rural Karnataka (Hubli district), FSWs talked of fear of getting killed if they resisted in case of mass coercion; thus, lamenting upon their helplessness as follows:
“What to do? We don’t have any options. They [/clients/] come and tell that there is only one person, but they will be four and they will take [us] to the jungle and will do [sex] forcefully. If we go against them, they will kill us and will throw [us] there only” [Rural BBSW, 03-10-35, Hubli-Dharwad, KT].
Time, location and situation- nothing appeared to be in the control of the FSWs. They seemed to be unable to use the condom in such situations. An HIV infected BBSW from Belagavi reported:
“No, without condom I used to never go and partners also- they were that way only [/used condom/]. But the ‘chapter’ [/goons/] people, they raped me and took me to some places and 10–12 people- the whole night they did [sex] with me. So I got that disease!” [Urban BBSW, 03-10-10, Belagavi, KT]
Instead of didactic education, practical need for protection emerges. Need for protection was urgent because of fear even from law enforcers. A lodge-based FSW from Belagavi expected as follows:
“Government should give us more facility [/safe space/] that also in free. We are poor. So sometimes police and ‘don’ [/local goons/] people come and take [us] forcefully [for sex] and put us in jail, and then they are asking for money and doing nonsense things [/having sex/] with us. Then madam [/ Brothel Keeper/] goes from here to bring us out from jail. We are in serious trouble in Belagavi. We are not safe even in lodge, and owner also does not allow us to stay in their lodge”. [Urban BBSW, 03-10-35, Belagavi, KT]
Being aware of how to protect oneself failed to turn into protective practice in case of regular partners. The high level of risk has been apparent when these women recounted situations of coercion, rape and violence. But in a regular partner relationship also FSW faced risk of condom-less sex. Situation was similar to what is observed among general women. FSWs also did not use condom with their regular partner for fear of suspicion and violence when condom use was suggested. An FSW stated:
“We cannot insist upon all [/types of partners/] to use condom. If we insist on a husband or partner to use a condom, then they will suspect us and violence might happen” [Urban FGD, FSW-2, Chennai, TN].
The emotional need of getting accepted by the regular partner led to condom-less sex even among the empowered peers. ‘Trust’ in a relationship turned out to be a barrier to condom use. A street-based FSW shared her inability to use a condom with her spouse because of ‘trust’ in her regular relationship which got further ‘accentuated’ by her HIV negative test report.
“My partner has seen my report. I don’t have HIV [infection]. [He] has seen my report, and he sits [/has sex/] with me without a condom. We have conducted a meeting of partners [for condom use] also, but our peers themselves sit without a condom as they are [their regular] partners [/laughs/]. We tell other women to use a condom with a partner; [also tell them] do not keep auto drivers as a partner but we have the same at our home. What to do? Because they [/spouse/] say, Do I go anywhere [for sex]”? [Urban SBSW, 01-10-13, Pune, MH]
FSWs elaborated on multi-layered inhibitions, barriers, and vulnerabilities to bring out the real sequelae of condom-less sex. In the setting of stigma and societal facelessness, trust shown by her partner is a valued reflection of respect given by the partner which she would not want to lose at any cost. To reciprocate, she does away with condom use. An FSW in Chennai stated:
“I don’t have a husband but I have one regular partner. And he has a lot of confidence in me. So due to this high confidence in me, I never use a condom with him” [Urban FGD, FSW-4, Chennai, TN]
Oral PrEP is a felt need
Life in a situation of economic fallacy exists for FSWs and despite being aware of risks and working in the fear of situations of coercive sex, FSWs do not refuse to go ‘outside’ with clients. Condom-less sex events seemed to be a common occurrence not only when coercive sex occurs but also clients did not use condoms under the influence of alcohol or if they were powerful local disruptive men. Varying levels of risk brought out the need for FSW controlled prevention option. An FSW shared her need for oral PrEP as follows:
“Sometimes if we get caught in the custody of rowdies, they threaten us and ask us to have sex without using a condom. So because of fear, we have sex without a condom with them. To prevent HIV transmission it [/oral PrEP/] is needed, like earlier sister said that, at the time of alcohol consumption they do sex without a condom” [Urban FGD, FSW-1, Chennai, TN].
In the context of condom-less sex, oral PrEP as an alternative to male condom was a felt need of both rural and urban FSWs:
“Definitely, the new prevention product is very much necessary because the gents [/men/] refuse to use the condom during sex. This new prevention product will be very much necessary for people like us [/FSWs/]” [Rural BBSW, 06-10-44, Vellore, KN].
Need for oral PrEP, especially understanding it as a female-controlled option, was acceptable to both the brothel (42.7%) and street-based (57%) sex workers. They reported facing challenges around male condom usage such as ‘interference with pleasure’ and ‘client satisfaction’. A female key informant from an NGO emphasized upon the client’s expectation of pleasure and how oral PrEP would satisfy that criteria:
“It [/oral PrEP/] is convenient to take! There is no question. People feel that there is no skin to skin touch in condom use. That issue doesn’t come in that [/when one uses oral PrEP/]” [Urban Social worker, 01-60-16, Pune, MH].
FSWs in the FGD agreed as follows:
“Some people say that they feel dissatisfaction during sex [/with condom use/]” [Urban FGD, FSW-5, Chennai, TN].
Hope for blanket protection from oral PrEP emerges when FSWs talked about risks in their profession. They informed that violence and forced sex were the social conditions in which an FSW lived. Within this social context, an FSW who is aware of the threats but her livelihood needs make her take a risk, depicts the multi-layered nature of her vulnerabilities. Transactional sex is ‘hurried’ which leads to condom tear. These situations give rise to the need for other prevention technologies:
“Some customers [/client/] will tear the condom and do [sex]. In such times, we should be careful. So this tablet [/PrEP/] will be useful in that condition” [Urban SBSW, 05-10-19, Chennai, TN].
Since client satisfaction is the major goal in the sex work profession, a health care provider (HCP) from a rural site emphasized PrEP as an empowerment option for FSWs.
“If it [/PrEP/] is to be taken regularly, target intervention people especially female sex worker can take it. Because they can use it when the male condom is not used. A female condom is not there [/available/]” [Rural DAPCU representative, 06-50-41, Vellore, KN].
The FSWs projected the financial benefits out of oral PrEP. Condom-less sex being more in demand, FSWs participating in FGD wanted an alternative for the male condom. She examined its economic benefit along with its long term protection value:
“Some people are there if the clients give more money then, they have sex without using a condom” [Urban FGD, FSW-2, Chennai, TN].
She emphasized her need for long term protection which a tablet formulation would be able to give her and serve a dual purpose of safety as well as she will have better financial gains by not being bothered to insist on using male condoms by her clients. Thus she pointed out on the need for female-controlled option as follows:
“...It [/Prevention option/] must come in the form of a tablet so that it will be in our body and we can do sex work without any problem. Eventually, we can earn more money and also we can live safely” [Urban FGD, FSW-2, Chennai, TN].
Building confidence in the product
A high level of acceptance for hypothetical oral PrEP was expressed among FSWs belonging to the urban areas of Chennai (10/ 13) and Pune (03/ 05). However, the need to be confident about the actual product prevailed. Some of the FSWs were keen to see and test the product before they formed any opinion about their preference.
“Now, without seeing how we can tell [about] those things? [/she laughs/] Without seeing, how can the things be known? As we saw [/used/] the condom and accepted… so will check the thing [/oral PrEP/] after it comes and then only will prefer” [Urban SBSW, 01-10-13, Pune, MH].
“It is very much difficult to take the tablet regularly. Before taking this tablet [/PrEP/] regularly we must ‘know’ about the tablet [/PrEP/]” [Urban SBSW, 05-10-77, Chennai, TN].
Participants felt they need to use a product to know the range of side effects it may cause and it might influence the sustained use of this prevention product:
“Only after using it, we can tell whether it has any problem. But it should not have side effects. If I take one tablet with another, I will get giddiness. Some people will get stomach burns, ulcers. A tablet that overcomes all these should come” [Urban SBSW, 05-10-19, Chennai, TN].
In Chennai, participants were conscious of the need for the product to be tested first:
“Before launching the tablet, the tablet must be pre-tested, it will be good if it comes like this. Then only people will come forward to buy and use” [Urban FGD, FSW-3, Chennai, TN].
Expected product characteristics
If FSWs were confident about the product and wanted to use it, they had suggestions for certain characteristics of the product which would facilitate optimal usage of the product. Following three facilitators emerged from the study: 1) Easy to use, 2) Ensuring privacy-formulation, 3) Positioning to maintain confidentiality
Easy to use
Among many of the challenges with condom usage, making men wear a male condom was reported to be the major challenge for FSWs. They found the process of wearing a condom far tedious which in their own words was ‘not as simple as swallowing a tablet’.
“This tablet is for preventing HIV. So, it can be very well taken. We don’t have a fear of it. Whoever wants, can use it. Men or women, whoever is going to this type of work [/sex work/], they can use it. It is good to use it as it prevents HIV” [Urban BBSW, 05-10-27, Chennai, TN].
Formulation to ensure privacy
FSWs wanted to protect their privacy; a client need not know if she was using any protection. This privacy also appeared to be a function of ‘trust’. Without invading the ‘trust’ of the partner, the FSW would be able to use the pill to protect herself. Swallowing a pill would give her protection, privacy, and ease of use, altogether. According to them, since it would be a pill, it would be easy to use:
“ Among all, tablets are best madam…. Means it will be swallowed if that tablet is taken- means- no one will come to know and will not flash [/client will not realize that I have taken it/] anyone [Rural SBSW, 04-10-08, Dharwad, KN].
The ‘oral tablet’ allayed FSWs’ fears about their confidentiality; they felt that it made them self-sufficient for protection; did not make them dependent on the health system:
“Tablet is the best. We don’t have to go to a place for injection, we can buy and keep the tablets and use by ourselves. Even this has to be made available in NGOs, medical shops and hospitals” [Urban SBSW, 05-10-19, Chennai, TN].
Since PrEP has not been part of any prevention discourse in India and therefore, it is highly unlikely that participants of this study had even heard of PrEP prior to the study and therefore they were unaware that oral PrEP might not be an ‘over the counter’ (OTC) drug and that there would be a need for monitoring by the health care provider for any side effects after the initiation of oral PrEP. FSWs from Chennai during FGD pointed out their preference for CBOs or NGOs and not doctors for oral PrEP dispensing as they wanted to be given services ‘with no questions asked’.
“Now the doctor asks many questions - how many customers I have attended? Do you have a habit of alcohol? How much money do you spend on that?” [Urban FGD, FSW-7, Chennai, TN]
The probing questions, perhaps the practice of asking sexual behavioral questions brought this concern. An FSW felt the questions were embarrassing and were suspicious that these are being asked not out of ignorance because ‘peers’ from their community brought them to the HCP.
“This may be the reason people are not coming to the hospitals because unwanted questions were being asked by the doctors. If we bring ORW [/outreach worker/], though they knew we are community people [/sex workers/], doctors will ask unnecessary questions to us, so this may be the reason that people hesitate to come to the hospital and ICTC centers” [FSW-2].
Positioning to maintain confidentiality
The theme ‘Positioning to maintain confidentiality’ was derived from the narratives where FSWs felt that they would be able to access the tablet in privacy; where no one would know them and no one would understand the purpose. According to them, the positioning of the product as a medical product would be helpful. This seems to be a false expectation of making oral PrEP available as OTC at pharmacies:
“It will be good if it comes in medical products like a tablet, so that without anyone knowing [about it], we can have the tablet” [Rural BBSW, 06-10-44, Vellore, TN].
“…normally anyone goes to medical [/pharmacy/]” [Urban SBSW, 01-10-13, Pune, MH].
Unlike FSWs in an urban setting who did not want to go to a doctor to receive oral PrEP, FSWs in rural areas did not have any concern about the integration of oral PrEP delivery with ART centers or ICTCs. Their idea was to integrate CBOs/ NGOs with existing program structures:
“From the ART center, it should be promoted up to the outside people again… it is very necessary [to be dispensed], through an organization. From there also the women will get information” [Rural BK, 02-60-44, Karad, MH].
“I feel that… somewhere if it [/tablet/] will be kept in NGOs then will be ok. I do feel so” [Rural SBSW, 02-10-42, Karad, MH].
From the implementer’s point of view also, dispensing through village level functionaries was the preferred option:
“Availability is very important for the tablet. If it is available with village health nurses, Anganwadi workers [/village level workers/] it will be still good” [Rural DAPCU representative,06-50-41, Vellore, KT].
Barriers to acceptance
Many concerns about oral PrEP were expressed. Taking a tablet for prevention is a major issue. Following barriers to oral PrEP usage emerged: 1) Stigma of using HIV treatment product, 2) Fear of side effects
The stigma of using HIV treatment (ART) product:
FSWs were apprehensive about accessing oral PrEP tablets because they felt that it would be equated to seeking treatment for HIV by the community. They used phrases such as, ‘becoming infamous [/defamed/]’; ‘community would never believe [/that they are uninfected/]’. Despite the emerging need for oral PrEP, FSWs found oral PrEP as stigmatizing. After all, the Oral PrEP is an ‘ARV’. They were conscious of the fact that the community perceived oral PrEP tablets as a ‘treatment medicine’ for ‘the HIV infected’. This statement had nothing to do with the concept of treatment competition for ARV; rather it pertains to stigma. They got agitated with the thought of two people taking similar medicine: one for treatment and the other for prevention. To differentiate between oral PrEP and ARV was too complex to discern for them and the community:
“No benefit, benefit… started becoming infamous, then it will happen like this- she has that tablet, same [/ARV for HIV treatment/] you are giving to me? [They] will not listen. No one will agree for that tablet [/oral PrEP/]. So women will be afraid of becoming infamous. =name of FSW = as well as = name of another FSW = eats the same tablets! It means they both have got [/HIV/]. There the people [/client/] will say this who is [/point out/] having the same tablets. That tablet [/ARV/] has become too famous” [Urban SBSW, 01-10-13, Pune, MH].
The community being suspicious was a major concern because oral PrEP would be an ‘ARV’. A woman mimicked the voice of the community,
“This means the tablets cannot be taken without a reason. I don’t have any disease, nor any risk. Why then I eat [/tablet/]?” [Urban Woman (Spouse of PLHIV), 01-20-23, Pune, MH]
It is noted that FSWs are talking about ‘risk’ which could be used as an indication for oral PrEP. HCPs also considered ‘oral PrEP tablet versus ARV treatment’ situation a challenge. A DAPCU representative from rural India said that risky behavior is a routine continuous activity as opposed to rare accidental exposure. He felt daily oral PrEP would be a challenge:
“Now health care providers take PEP [/post exposure prophylaxis/] after exposure [/only for short period/]. But PrEP is to be taken before exposure that too continuously. But if it is to be taken continuously, everybody will not take it. So, it is difficult to reach to people” [Rural DAPCU representative, 06-50-41, Vellore, KT].
Fear of side effects
In addition to the above described reasons for non-use of oral PrEP, fear of side effects was another major cited reason. Most of the BBSWs (77.3%) talked about their concerns about side effects. However, SBSWs raised this concern in low numbers (5.6%).
“… But for some people, the body will not accept the drug. Sometimes they may take the tablet and some time they may skip” [Urban BBSW, 05-10-27, Chennai, TN].
‘Body heat, giddiness, ulcers, weakness and total rejection by the body’ were some of the anticipated side effects of oral PrEP. Fear of side effect was also voiced as reasons for preferring condoms over oral PrEP.
“I don’t know whether people will use regularly. Those who like to use condom definitely they may have fear on using this tablet [/PrEP/] so there will be less chance of using this tablet [/PrEP/]” [Urban BBSW, 05-10-72, Chennai, TN].
FSWs professed fear towards the possibility of harm occurring to their reproductive parts. They were quite vocal about this issue and some narrated their experience from family planning.
“But I feel difficult to use regularly because earlier I used = mala-d= [/contraceptive pills/] that gives many problems like a bad smell in urine, lower abdomen pain and burning sensation” [Urban BBSW, 05-10-72, Chennai, TN].
Related to their profession, preserving the beauty and the reproductive part/s, were some of the major concerns. In both urban and rural sites, concern existed among the FSWs that these attributes might get compromised if they took oral PrEP:
“People will take regularly to prevent diseases. This tablet we can take but there should not be any problem in the uterus of the women” [Rural BBSW, 06-10-44, Vellore, TN].
“Only if it is not having side effects, we can use it regularly. Beauty is a must to do sex work. This tablet should not spoil it” [Urban SBSW, 05-10-19, Chennai, TN].
Adherence to oral PrEP
Perceived barriers to adherence
Despite the proven efficacy of oral PrEP, the effectiveness depends on the adherence. The daily dose was a challenge:
“FSW people… Taking the tablet daily is impossible for them. Other products may be used by others” [Urban BBSW, 05-10-30, Chennai, TN].
Three sub-themes emerged that cover the perceived barriers to adherence to oral PrEP: 1) Alcoholism, 2) Psychological barriers, 3) Typological barriers. These barriers to adherence are discussed as follows:
Alcoholism
Alcohol forms a prominent part of the routine work of the sex worker. Alcohol consumption is a compulsion of her profession and subsequently, it becomes her need. Hence a vicious cycle of compulsion and alcoholism appears to be the lifestyle under which FSWs showed apprehension for initiating or adherence to oral PrEP tablets. According to an FSW in Chennai:
“Sex workers will maximum [/mostly/] be alcoholics. They say that only when they are drunk; they can do the work. We don’t know whether this tablet can be taken if drunk? Suppose if it can be used even in drunken [state], then again taking it regularly will be difficult because if they take alcohol, they forget to take tablet regularly...These people [/alcoholics/] are not taking tablets regularly even for diabetes” [Urban BBSW, 05-10-30, Chennai, TN].
SBSW from Chennai pointed out towards the habit of consuming alcohol and raised apprehensions about interactions between alcohol and oral PrEP:
“Most of the people in the field [/sex work/], they are having the habit of alcohol consumption. I have a doubt! While using this tablet, how it works at the time of alcohol intake?” [Urban SBSW, 05-10-21, Chennai, TN].
Alcohol was professed as part of their lifestyle. An SBSW from Pune described how she ends up having alcohol in her occupation and that she would be anxious about interaction with PrEP:
“Then my partner, if we have gone outside then what he does, at very first he brings beer, biryani [/a rice-based spicy and savory food/], etc. If with him, then now…after taking the tablet, if I took a beer with him, then, will I not have trouble [/Taking beer with PrEP tablet: Would adverse effect develop? /]” [Urban SBSW, 01-10-60, Pune, MH]
In an FGD at Chennai, an FSW also wanted to know about interactions with recreational drugs. One of the FSWs in the FGD also logically pointed out that because daily alcohol or drug intake was the compulsive need of their profession, taking daily oral PrEP will be a challenge:
“At the same time, I don’t know whether those who are addicted to drugs they might take or not [/take oral PrEP/]. They feel that they would not be able to work if they are ‘not intoxicated” [FSW-8].
A complete conviction seemed to emerge that this tablet should not be taken with alcohol or any other substance as the FGD participants from Pune put forth this argument:
“If having taken the tablet, then we should not chew Gutkha [/chewable tobacco/], should not drink [alcohol] and I have seen that with my eyes” [FSW-4].
Alcohol and drug use were the strong perceived reasons for not taking PrEP inadvertently: ‘they will forget’; ‘will be too intoxicated to remember’ were commonly uttered phrases in the study. An SBSW from Pune told the reason for not wanting to take PrEP:
“Yes, hurdles… therefore we can’t take [oral PrEP] daily and one thing about me is, I have the habit of drinking [alcohol]” [Urban SBSW, 01-10-60, Pune, MH].
The apprehensions surrounding PrEP medicine and alcohol was prevalent among FSWs. Her compulsion to consume alcohol brought out concerns about interactions of oral PrEP tablets with alcohol. The use of alcohol was not only a habit or occupational need but also seemed to be a panacea for all problems. An SBSW from Pune narrates the sequelae of ending up with consuming alcohol for any or everything:
“As I drink alcohol, it means I cannot take that tablet [/Feels PrEP would interact with alcohol/]. Suppose I have white discharge then also I will not take that tablet; I will take it on the second day. But then, as I have severe white discharge; I will become angry and drink one quarter [/of alcohol/]. Woman [/FSW/] has such [habit] and [only] 5 out of 100 women [/FSWs/] are there who do not drink!” [Urban SBSW, 01-10-13, Pune, MH].
Thus, fear of the adverse effect of oral PrEP in the context of their lifestyle was a major concern.
Psychological barriers
A brief attention span and sustaining interest emerged as a unique challenge among FSWs. The fluctuating mood is aptly reflected in the phrase they used: ‘anything routine is boring’. They do not want a repetition of any nature in their life and therefore, taking medicine every day is ‘boring’ for them.
“Will get bored. [People] will say, on daily basis-everyday what? Tablet-tablet! [/angry expression/]. Injection, if taken once, then there will be no tension up to one-one and a half year” [Urban SBSW, 01-10-56, Pune, MH].
‘Boring’ was the state of mind that was constantly voiced by other stakeholders as something repetitive which is not acceptable. To prevent boredom with oral PrEP, other suggestions were that of intermittent dose or coitus dependent regimen that will not bind them to daily regimen:
“I have to eat [/take PrEP/] regularly, then people will be bored. This means they will miss out or become bored. So is it anything like this in that tablets, that the tablets will take only while during sex or like today suppose I want to do or want after one or two hours…. So instead of taking regularly, if the tablets [/PrEP/] will come like before the sex only, maybe half an hour, before 15–20 minutes should be taken then. There will not be any problem at all in that” [Urban bisexual man, 01-30-11, Pune, MH].
Typological Barriers
The condition for non-use of oral PrEP would also depend on the typologies of the FSWs. Over half of the BBSWs (68%) and almost a quarter of SBSWs (33%) cautioned that there would be differential adherence to oral PrEP among FSWs belonging to various typologies. The situations and context are different for different typologies of FSWs. For example, a home-based sex worker would have probably no privacy to continue with the oral PrEP while FSWs, who were on daily-wages, would not be able to afford it daily because of cost as well as disrupted meal timings:
“Taking it daily in a family will not be easy. There is a possibility to forget due to situations like quarrels, any problem, and any work tension. If we become tense due to any problem, we might forget and then later worry about it” [Urban BBSW, 05-10-27, Chennai, TN].
“…majority of people are on daily wages, so it is difficult to take the tablet [/PrEP/] regularly” [Rural SBSW, 06-10-43, Vellore, TN].
Affordability emerged as a major challenge for adherence cited in case of adherence problems in treatment related to Non-Communicable Diseases and even prevention medicines. Majority of the FSWs demanded free or subsidized oral PrEP:
“It will be good if the government provides some concession or else free of cost on medicine for the people like us [/FSWs/] so that it will be very much helpful to take regularly” [Rural BBSW, 06-10-44, Vellore, TN].
Facilitators of adherence
Adherence facilitators were very specific to the profession of FSWs. Their work required long-acting PrEP. Their work also required physical beauty/ attributes that they perceived that made them more attractive. Following two facilitators of adherence emerged: 1) Long-acting PrEP, 2) Monitoring
Long-acting PrEP:
This emerged as the only facilitator for adherence from rural as well as urban FSWs:
“It’s good if the tablet comes for 3 months once or twice but it should not be [/meant to be/] taken daily” [Rural SBSW, 06-10-43, Vellore, TN].
“The tablet [/PrEP/] can be made such that it can be taken weekly once or monthly once instead of daily. It will be better for people to take it consistently” [Urban SBSW, 05-10-21, Chennai, TN].
“Once we take for 2–4 months, if it works it is ok, or for once it works for one day it is ok.” [Urban SBSW, 03-10-31, Belagavi, KT]
“It will be good if the tablet [/PrEP/] can be taken once in six months or yearly once, I feel difficult to use it daily” [Urban FGD, FSW-2, Chennai, TN].
An FSW took the example of national guidelines for HIV testing for key populations to justify a long-acting PrEP as follows:
“Hmm! how our test [/HIV testing/] happens monthly or two months or three monthly? The same way women should get an injection like that … so then she won’t get bored” [Urban SBSW, 01-10-13, Pune, MH].
In the context of adherence, the FSWs put forth their fear of missing dose and the consequent repercussions of acquiring HIV. They tried to extrapolate from their past experiences with contraceptive pills where missed doses had led to conception. ‘What happens if a dose is missed in case of unprotected sex’? This question was raised in several contexts particularly when these women were not confident of optimal adherence. A need to understand the impact of ‘missed’ dosage emerged as responded by the FSW in Chennai:
“If we see the contraceptive pills, we are taking it continuously for 30 days. If we leave it even for one day, we may conceive. But, for this [/oral PrEP/], if we take this continuously and leave it for one day, we should not get any effects [/HIV/]. If it is like that, then it is OK, or else it is difficult to take it continuously” [Urban BBSW, 05-10-27, Chennai, TN].
Monitoring
FSWs emphasized that community is error-prone when it comes to behaviors, especially health behaviors. Hence a simple logic was posed by them– ‘no one gets punished for having a delay in meals’ and similar principle should apply to oral PrEP. Concern for adherence followed logical exploration about the monitoring needs. FSWs suggested the role of NGOs in retention and adherence to overcome the problem of missing dose:
“Similarly they may not miss the tablet. Eventually, someone must follow them from the NGO to [/remind them to/] take the tablet regularly” [Rural SBSW, 06-10-43, Vellore, TN].