Test and treat: the early experiences in a clinic serving women at high risk of HIV infection in Kampala

ABSTRACT

At the end of 2013, the Government of Uganda issued guidance recommending provision of Anti-Retroviral Treatment (ART) to HIV-positive people in key populations, including female sex workers, regardless of CD4 cell count. We describe the implementation of this new guidance in a clinic serving women at high risk of HIV infection in Kampala. Between July and December 2015, we conducted repeat in-depth interviews with 15 women attending the clinic after the change in guidelines, to explore their perceptions regarding prompt ART initiation. The sample included some women who were HIV-negative and women who had both started and deferred ART. We conducted a data-led thematic analysis of the material from the interviews. A total of 257 of 445 eligible women had started ART; others were undecided or had not returned to the clinic after receiving the new information. Participants recounted varying experiences with the provision of prompt treatment. At an individual level, a history of treatment for opportunistic infections and other illnesses, coupled with relatively poor health, encouraged some to initiate ART promptly. However, knowledge of friends/relatives already on ART who had experienced side effects caused others to delay starting, fearing the same experience for themselves. A number of women questioned why they should start treatment when they were not sick. Situational factors such as work and residence (with many sharing single rooms) caused discomfort among newly diagnosed women who feared disclosure and stigma that would result from taking ART when they were not ill. Alcohol consumption and irregular working hours affected perceptions of future adherence, making prompt ART harder to embrace for some. Our findings show the challenges that influence the delay of treatment initiation, and/or the decision to defer receiving information on ART, with implications for the success of the test and treat programmes and guidelines.

KEYWORDS:

• HIV
• anti-retroviral treatment
• test and treat
• prompt treatment
• key populations
• Uganda

Introduction

In December 2013, the Ministry of Health of the Ugandan Government issued an “Addendum to the National Antiretroviral Treatment Guidelines”. In addition to making provision for all pregnant women living with HIV to be put on immediate anti-retroviral treatment (ART), it also recommended that HIV-positive partners in sero-discordant relationships, people with active TB or HBV co-infection and children below 15 years old be put on treatment. In addition, the guidelines recommended that specific key populations such as “HIV+ fisherfolk, commercial sex workers and truckers operating in hotspots should initiate ART irrespective of CD4 count” (Uganda Ministry of Health, 2013, p. 13).

The change in guidelines is timely, given the evidence of the benefits of early initiation of anti-retroviral therapy for individuals living with HIV, and through reduced viral load, less likelihood of transmission to others (McNairy, Cohen, & El-Sadr, 2013; The INSIGHT START Study Group, 2015). A move to prompt treatment for all people living with HIV, irrespective of CD4+ count, has also recently been endorsed in guidance issued by the World Health Organisation (2015). The guidance to provide prompt HIV treatment to key populations, as a part of HIV prevention interventions in Uganda, stems from growing evidence of high HIV prevalence among groups of people engaged in risky sexual behaviour, including female sex workers. In Kampala, recent research has noted high HIV prevalence among women in the general population (Nakku-Joloba et al., 2015), and specifically among women engaged in sex work and their clients (Lindan et al., 2015; Vandepitte et al., 2011). Female sex workers are vulnerable to infection because many have multiple concurrent partners, may not always be able to negotiate condom use, and may also be at risk of violence from clients and regular partners, among other factors (Rutakumwa, Mbonye, Kiwanuka, Bagiire, & Seeley, 2015; Schulkind, Mbonye, Watts, & Seeley, in press; Scorgie et al., 2012).

In this paper, we describe the early experiences of the implementation of the 2013 treatment guidelines for female sex workers attending a clinic providing health care to women at high risk of HIV infection in Kampala, and highlight some of the current challenges in implementing this guidance.

While we recognise the agency of women who make informed choices about their lives, we note that the lives of many women, including sex workers, are greatly affected by external processes in their local environment and beyond. We therefore use a social ecological model, drawn from the work of Heise (1998), to structure our findings, moving from factors related to individual experience to situational and sociocultural/political factors which influence women’s lives. Social ecological models are based on the assumption that behaviour is a product of various levels of processes acting in concert to shape behaviour (Busza et al., 2012).

Despite the public health importance of providing ART to sex workers, there are a number of obstacles which affect the roll out of immediate treatment for sex workers in Uganda. Sex work is illegal; this affects not only the safety and security of the women engaged in this work, but also their access to services. Working conditions discourage disclosure and invite discrimination even at health facilities; targeted harassment by law enforcement agencies (as well as regular partners and clients) acts as real or potential barriers to healthcare access and specifically HIV-related services (Chersich et al., 2013; Mbonye, Nakamanya, Nalukenge, et al., 2013; Schulkind et al., in press; Schwitters et al., 2014). These challenges also affect the sustained access of women living with HIV to care programmes, and their continuation on ART.

Methods

The women in our study attend a clinic in southern Kampala that offers support to women at high risk of HIV and sexually transmitted infections. The clinic also offers treatment to the women’s children under the age of six years. The clinic was set up in 2008 (Vandepitte et al., 2011) and by the end of 2015 was serving over 3000 women and about 150 of their male partners. Prior to the recent change in guidelines, women found to be HIV-positive were offered Cotrimoxazole until their CD4+ count fell below 350 at which point ART was added to the treatment. Those found HIV-positive at that time were encouraged to maintain their health through their diet and prompt treatment of sickness, in order to sustain their CD4+ count and delay ART initiation. Following the new guidelines, which were implemented at the clinic from August 2014, all HIV-positive women irrespective of CD4+ cell count were encouraged to immediately start ART.

In order to investigate the determinants of the decision that the eligible women took as to whether or not to initiate ART, we undertook a qualitative study with some women being offered immediate treatment, as part of an ongoing study of sexual behaviour. A random sample, stratified to include both HIV-positive and HIV-negative women, was provided by the data manager, guided by a study statistician. The target sample was 30 women. A list of HIV-positive women who had come to the clinic and either started or delayed treatment was drawn up by the clinic data manager. It is from this list that HIV-positive study participants were obtained. Newly enrolled HIV-negative participants were randomly selected and included in the list of potential study participants. The inclusion of HIV-negative women was made to protect the status of those who were positive and also to capture some perspectives from those not yet HIV-positive about their perceptions regarding the test-and-treat policy. The interviewer was blinded to the HIV-serostatus of the women, although women often chose to disclose their status during the interviews. The study was designed to interview the women at least three times with each interview building on the previous one. The interviews were conducted at the clinic by a trained female social science interviewer who is well known to the women having been involved in previous research work with some of them. Since tape recorders were not used, because women were uncomfortable about having their voices recorded, notes were made during the interview and a detailed account of the interview written up in English immediately after the interview. The experienced interviewer had been trained in detailing as much as possible of what was said during the interview, including capturing verbatim quotes which represented the voice of the participants. Debriefs were conducted after each interview, which helped to inform the focus of subsequent interviews. This is a tried and tested approach and we have successfully conducted interviews without tape recorders with this population in our previous work (Mbonye, Nakamanya, Nalukenge, et al., 2013; Mbonye et al., 2012; Mbonye, Rutakumwa, Weiss, & Seeley, 2014). All personal identifiers were excluded from the detailed accounts. This paper is based on the analysis of the experiences of 15 women interviewed between July and December 2015.

The data-led thematic analysis was undertaken by coding the interview accounts from the women into themes and sub-themes manually. The analysis was an iterative process, with the themes continually reworked as the scripts were reread and discussed by the interviewer and others in the social science team engaged in the analysis. Relevant text from each interview was highlighted and arranged into groups of repeating ideas expressed by more than one of the participants. A framework approach was used to order and group the data, with thematic summaries then being written up on the findings.

Ethics approval was obtained from the Uganda Virus Research Institute Research Ethics Committee and from the Uganda National Council for Science and Technology. Written informed consent was obtained from all participants who consented to take part in research activities at the clinic.

Results

By December 2015, 445 women in the clinic were eligible to start ART either because they were already HIV-positive by August 2014, had been attending the clinic and sero-converted between August 2014 and December 2015 or were new participants who had tested HIV-positive. Most of these (361 [81%]) had been reached by December 2015 and offered introductory sessions about the new guidance on ART initiation. Two hundred and fifty-seven (71% of the 361 women) had started treatment. Of the remaining 29% of the 361 women, 48 women were undecided about whether to start and 56 had not returned to the clinic after receiving information on the new guidelines. Eighty-four women (of the 445) were registered at the clinic prior to the change in guidelines, but had not responded to the invitation to visit the clinic for treatment.

We now describe some of reasons the women gave for either delaying or declining to start treatment.

Personal perceptions of test and treat

Those who had been on some form of treatment for other ailments or Cotrimoxazole before the change in guidance seemed most eager to start ART. Many of these women had a history of illness and had taken drugs over prolonged periods; thus, the addition of ART was not seen as a major change. They trusted the clinic staff and the drugs provided and hoped that this offered them another route to managing some of the symptoms that disturbed them.

However, others who felt well compared themselves to people who they knew who had been very unwell because of HIV-related illnesses; they were much more reluctant to start. The perception that informed this delay was that ART was for those in poor health. Women who were well could not understand why they were suddenly being grouped with those who were “very sick”.

I used to think that women that had just given birth or who were breast feeding or the very sick were the ones to take that thing [she used the Luganda term for the ART drugs to mean an undesirable thing] but for me, I wasn’t sick. (Jackie, aged 22, HIV positive, delayed treatment for a year)

Many were concerned about the possibility of suffering drug side effects. This was because they associated ART with disfigurement (particularly lipodystrophy which causes abnormal fat distribution). To these women, the drugs were regarded as something of a mystery that once they entered the body could cause undesirable effects. Women were concerned about the stigma that would come from the changes to their bodies and the impact this would have on their work. These are concerns that many people starting ART under the older guidelines share, which are not specifically related to “test and treat”. The belief was that a drug strong enough to fight the virus would cause a “war-like” situation within their bodies. Side effects were therefore thought of as inevitable. These feared side effects ranged from mental instability to bad skin reactions and disfigurement.

Within me I was filled with fear, I was asking myself how I was going to manage the drugs … I so much worried about the drugs because the people I had seen taking them were taking many big pills, some of them lost their mental wellness. (Diana, aged 22, HIV positive, delayed treatment for a month, only started due to an infection)

This fear was also shared by Martha:

I was first told in April [about 5 months prior to actual starting] but I feared. The counsellor told me that the drugs were good because they reduce the viral load, boost immunity and minimize the risk of re-infection but I still failed. I only reluctantly started after visiting three times. But after starting I imagined how I was yet to look and it so happened that I started to feel sleepy and weak and this is when I said that ‘I am finished’. (Martha aged 32, HIV positive, delayed for 5 months)

However, Martha then went on to recount how surprised she was when she did not suffer the side effects she had feared and managed to stay on treatment.

Some women worried about poverty affecting their ability to take their drugs. Jane (aged 24, not yet started ART), for example, said that she did not earn enough to buy food, saying if she missed many doses because she had nothing to eat, her health would worsen, so it was better not to start ART. Other women had similar concerns about a lack of food and money.

Situational factors related to “test and treat”

Those who had been HIV-positive for some time and had become eligible for ART under the new guidelines were more likely to delay their decision to start than those who were newly diagnosed. This was, some said, because the change conflicted with what they had been told at the clinic. They had regarded delaying ART as a major milestone in their success in managing HIV. Every time they reported at the clinic and were told their CD4+ count was still high, they felt that their positive living efforts were being vindicated since they were not yet ready for ART. The ability to delay ART and keep doing their work as usual was thus something that they prided themselves in and so, with the change in guidelines, they were disappointed:

I feel my life is okay and in fact I feel I can take two to three years before starting ART but poverty stresses me and someone may think it is HIV that is affecting me. I dig from morning to evening. My life hasn’t been bad and I feel energetic so telling me to start taking ARVs I feel I am being forced. (Eron, aged 37, HIV positive, has not started ART)

Another woman, Linda, mentioned how she was monitoring her own health and waiting for the symptoms which would suggest she should start ART:

I refused to take the drugs [ … ] I asked for the period it takes for an HIV-positive person to get signs and symptoms and she told me two years but by then, I had been with it for about six years. Let us wait for next year, I might accept. I have decided to wait until I start getting evening fevers. (Linda, aged 27, HIV positive, has not started ART)

Many women were concerned about the difficulty of keeping their HIV status confidential when they initiated treatment. Many women in the clinic population live in small rooms with other women; this makes it hard to keep the fact that they were HIV-positive from others. Some women said that they could manage to keep their status confidential, if they were not taking a lot of drugs. The introduction of life-long treatment was seen as a threat to this confidentiality and they were therefore not ready to start. As part of the management of ART and in order to facilitate adherence, they had also been encouraged by clinic staff to disclose to someone and many who had only known about their status for a short time were struggling to do this.

It is my secret and I have kept it until now. People are difficult and when you decide to confide in someone, she may instead tell everyone about you. They even end up labelling you which may end up bothering you. (Diana, 22 years old, HIV positive, delayed treatment for a month, only started due to an infection)

Sociocultural and political factors

As noted above, the change in guidelines was for some women irreconcilable with what they had believed about “positive living”, and they felt that they were being forced to go on to ART by a non-contestable Government policy.

The counselor told me that we want you to start taking ARVs because the government said that you should. I told her that I am the government and I make decisions concerning my life! (Eron aged 37, HIV positive, has not started ART)

The suddenness and promptness of recommended ART-initiation contrasted sharply with previous guidelines, when one was taken through a series of preparatory stages and given, they said, ample time to reflect on the lifelong decision. This was particularly confusing for women who had been being monitored for CD4+ cell count and then were suddenly told this count did not matter. This might have led to some of them to hesitate to start ART.

I remember it was in August 2015 when I tested and they told me to start ARVs but because I had so many problems, I told them to give me time. The counselor told me I was supposed to take ARVs every day and for life time. She told me that I was supposed to drink and feed on nutritious foods like fruits and vegetables, but there were times when I even failed to eat or sleep because of stress [so I could not start the drugs]. (Juliet aged 31, HIV positive, has not started ART)

They again told me to start taking ARVs but I told them that I will start next year. Like I have told you, I don’t have any health related problem. (Linda aged 27, HIV positive, has not started ART)

Women like Juliet and Linda wanted time to get ready for treatment; to work out how to fit it into their lives. While some women had other sources of income, apart from sex work, those who engaged in sex work as their only source of income found it much harder to start treatment because, some said, the instructions that they were given were in direct conflict with their work. They were told that the drugs worked better if one avoided alcohol and yet many felt that alcohol was needed for helping in providing courage to negotiate the price for sex and condom use. They were also told to reduce the number of partners they had, which some felt was telling them to be unemployed. A number of women were thus unable to make the drastic change. These women said that the new guidelines would make life too difficult for them.

Discussion and conclusion

Our findings show that while the majority of women eligible to start treatment at the clinic have embraced test and treat, a significant minority have opted out or deferred treatment. One of the main issues that affected the actions of those that delayed treatment was the perception that this was an unexpected change and threatened a sudden disruption in their lives by requiring what they saw as being drastic behaviour change.

Knowing one’s status (by testing) and being asked to start treatment, imposed a heavy burden that many women felt required adequate time and space to prepare and integrate in daily life. Previous studies on adherence, for example, have shown that adequate preparation is crucial and people need time to adjust to lifelong treatment (Foster et al., 2010; Nyanzi-Wakholi, Medina Lara, Munderi, Gilks, & Team, 2012; Wolff et al., 2009). Reluctance to start treatment immediately as well as refusal to start due to perceived “good” health and the possibility of disrupting entrenched lifestyles were highlighted in our findings. While at the biomedical level, the benefits afforded by ART mean that it should be initiated immediately after testing positive, the individual’s perception was that treatment is for the sick, and ART should start when one shows symptoms.

It is important to note that women engaged in sex work in our study are not a homogenous group, and some may be able to handle challenges more easily than others. However, even those women who have currently embraced the test-and-treat programme may also encounter challenges during their lifelong engagement with ART. This calls for a continuous and sustained intervention that focuses on key barriers such as stigma and lifestyle changes. Previously, we have seen how adherence changes over time (Mbonye, Nakamanya, Birungi, et al., 2013; Mbonye, Seeley, et al., 2013); this may also be the case with this group, especially given the fact many start treatment without the strong motivation of those who started when they were already very ill or were aware that they had failing health. Although women, like those attending the clinic in Kampala, have been shown to be capable of adhering at comparable levels with other women in the general population (Mountain et al., 2014), barriers to adherence such as alcohol use, partner change, high mobility, stigma and poor disclosure are important factors in their lives that may affect their future on ART (Weiss et al., 2016).

We conclude that while “test and treat” is welcomed by many women in our study, the barriers causing hesitation among a significant minority should not be ignored. Many women need appropriate support as they contemplate starting ART. Peer-led approaches have already been documented as being very helpful in interventions with sex workers (Reza-Paul et al., 2012) and these could be further enhanced to offer support for the implementation of the new guidance on prompt treatment, as well as continued efforts by clinic staff to support and reassure women initiating treatment.

Acknowledgements

We are very grateful to the women at the clinic for sharing their experiences with us.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The research is jointly funded by the UK Medical Research Council (MRC) and the UK Department for International Development (DFID) under the MRC/DFID Concordat agreement and is also part of the EDCTP2 programme supported by the European Union. The clinic at which the research was conducted receives support for the provision of clinical services from the US President’s Emergency Plan for AIDS Relief (PEPFAR) through the Centres for Disease Control.