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The Indian government provides free antiretroviral treatment (ART) for people living with HIV. To assist in developing policies and programs to advance equity in ART access, we explored barriers to ART access among kothis (men who have sex with men whose gender expression is feminine) and aravanis (transgender women, also known as hijras) living with HIV in Chennai. In the last quarter of 2007, we conducted six focus groups and four key-informant interviews. Data were explored using framework analysis to identify categories and derive themes. We identified barriers to ART access at the family/social-level, healthcare system-level, and individual-level; however we found these barriers to be highly interrelated. The primary individual-level barrier was integrally linked to the family/social and healthcare levels: many kothis and aravanis feared serious adverse consequences if their HIV-positive status were revealed to others. Strong motivations to keep one’s HIV-positive status and same-sex attraction secret were interconnected with sexual prejudice against MSM and transgenders, and HIV stigma prevalent in families, the healthcare system, and the larger society. HIV stigma was present within kothi and aravani communities as well. Consequences of disclosure, including rejection by family, eviction from home, social isolation, loss of subsistence income, and maltreatment (although improving) within the healthcare system, presented powerful disincentives to accessing ART. Given the multi-level barriers to ART access related to stigma and discrimination, interventions to facilitate ART uptake should address multiple constituencies: the general public, healthcare providers, and the kothi and aravani communities. India needs a national policy and action plan to address barriers to ART access at family/social, healthcare system, and individual levels for aravanis, kothis, other subgroups of men who have sex with men and other marginalized groups.
In 2004, the Indian government began providing free antiretroviral treatment (ART) through government ART centers (NACO, 2006). Although scale up of ART has been considerable, in 2009 only 45% of adults with advanced HIV infection were receiving ART (NACO, 2010).
Men who have sex with men (MSM) and hijras (genetic males who identify as women and can be grouped under the international umbrella term ‘transgender’ [male-to-female]) are designated ‘core high risk groups’ in India (NACO, 2007a). HIV prevalence among MSM is estimated at 7.3%, more than twenty times the general population rate (NACO, 2010). Recent studies report HIV prevalence among hijras of 18% in four south Indian states (Brahmam et al., 2008), 17% in Chennai (Saravanamurthy et al., 2010), and 41% among a clinical sample in Mumbai (Shinde, Setia, Row Kavi, Anand, & Jerajani, 2009). The International Treatment Preparedness Coalition reports limited access to ART among marginalized groups, including MSM and hijras (Abraham, Chakrapani, Ram, Ramesh, & John, 2006).
MSM and hijras are diverse populations. In Chennai, kothis are a relatively visible subgroup of MSM whose gender expression is feminine. Kothis are primarily receptive partners in anal sex and a significant proportion engage in sex work (Chakrapani, Newman, & Shunmugam, 2008; Chakrapani, Newman, Shunmugam, McLuckie & Melwin, 2007), both of which contribute to high risk for HIV infection. Some kothis also engage in sex with women and, largely due to powerful social norms and family pressure, some are married to women (Chakrapani et al., 2008). Hijras in Chennai are called aravanis and most live in aravani communities. A substantial proportion of aravanis engage in sex work for survival (Chakrapani, Babu, & Ebenezer, 2004).
The goal of this study was to inform effective interventions to increase ART access for kothis and aravanis living with HIV in Chennai; to that end, we aimed to identify and understand barriers faced by these marginalized groups in accessing free ART at government treatment centers.
In the last quarter of 2007, we conducted three focus groups among adult HIV-positive kothis and three among adult HIV-positive aravanis. Focus group participants were recruited using purposive sampling through four community-based organizations (CBOs) in Chennai to reflect diversity in terms of area of residence, living situation, and duration of service agency contact. We also conducted four key informant interviews with community leaders of agencies that work with kothis and aravanis.
We used semi-structured in-depth interview guides in Tamil with scripted probes that focused on barriers to ART access and how to address these barriers. Focus groups ranged from 60 to 90 minutes; key informant interviews were approximately 60 minutes. Focus group participants received an honorarium of 250 Indian rupees (~$6 USD); key informants did not receive an honorarium. Interviews were tape-recorded, transcribed verbatim in Tamil and translated into English for data analysis. All participants provided written informed consent. The study received approval from the ethics review committee of the Indian Network for People Living with HIV/AIDS.
Data were explored using framework analysis (Ritchie & Spencer, 1994). Based on Aday and Andersen’s (1974) framework of access to health services, we hypothesized barriers to ART access at family/social, healthcare system, and individual levels. For coding, we established a priori categories and also used open and in vivo coding to derive new codes that emerged, and a constant comparative method within and across cases (Charmaz, 2006; Strauss & Corbin, 1998). We used peer debriefing and member checking to enhance the validity of the findings (Lincoln & Guba, 1985).
Kothi participants (n=17) had a mean age of 32 years. Over half (n=10) completed high school; two-fifths (n=7) were married; one-third (n=5) were on ART; and half (n=8) engaged in sex work. Aravani participants (n=17) had a mean age of 34 years. Over half (n=10) completed high school; one-fourth (n=4) were on ART; and two-thirds (n=11) engaged in sex work. Two key informants represented kothis and two represented aravanis.
Participants reported that many aravanis and some kothis are estranged from their family, and often evicted from their home. Kothis and the relatively few aravanis who lived with their families usually did not disclose their HIV status or their sexuality, fearing familial rejection and bringing shame to their family and themselves. Such estrangement or lack of disclosure precludes family support to initiate ART. For example, an aravani participant reported:
I have already made my mother suffer a lot. This [revealing HIV status] will be too much for her and she cannot face others. I will postpone [taking ART] as long as I can. I am still okay.
In contrast, some kothis who lived with their family and had disclosed their HIV status were motivated to take ART in order to support their families. A kothi key informant explained, “Kothis think that we have to live for the sake of our family. We have to save some money for them before we die, hence they want ART.” Nevertheless, given the costs of ART in potentially revealing kothis’ HIV-positive status, this presents a double-bind: taking ART may enable one to live longer to support one’s family, however it also risks exposing one’s HIV status and thereby losing sex work clients and income (see Unmet basic needs below).
HIV-positive aravanis, who mostly lived with their aravani peers, feared labeling, social rejection, and loss of emotional and psychosocial support from their own community if they were seen taking medications (ART) on a regular basis, revealing their HIV-positive status. Kothis also feared social rejection by peers. According to a kothi participant:
Some [kothis] hesitate to take these [ART] tablets. We can take these tablets in the hand and go. Surely among the friends circle, they will ask why he is continually taking tablets.
In light of lack of support, aravani participants and key informants expressed a desire for a proactive role on the part of aravani community members as peer caregivers. An aravani key informant explained:
If we arrange food in time for them [other aravanis], there are more chances [to enroll them in an ART program]… if a TG [transgender] is on ART, other TG should always monitor her…. For others, we need to ask whether they are taking ART or not…. If we do like this, they will come to take ART.
Some aravani participants who initiated ART despite the risks acknowledged that referrals by aravani staff of CBOs helped them to initiate ART.
The struggle of many aravanis and kothis to meet day-to-day needs for food and shelter presented obstacles to initiating even free ART. Participants and key informants reported that often when parents learn of ‘gender-inappropriate’ (feminine) behaviors of their son, aravanis are evicted from their homes or run away when pressured to behave in a masculine manner or to marry a woman. In cities, aravanis take shelter in low income areas where basic amenities and proper nutrition are difficult to access. Aravanis and kothis who engaged in sex work to meet basic needs worried about potential loss of subsistence income if their HIV-positive status were revealed to potential clients by sex work colleagues. Initiating ART became secondary. A kothi key informant explained: “They are living with 100 rupees per day from sex work. When things are like that, only that [money] could be their priority.”
Participants and key informants noted a trend of increasingly positive attitudes among government healthcare providers, but also indicated continuing incidents of discrimination in government ART centers. Both actual negative experiences and perceived and anticipated discrimination discouraged some kothis and aravanis from accessing ART and healthcare services. Judgmental attitudes, substandard treatment, perceived deliberate delays in services, outright verbal abuse and non-verbal cues, such as facial expressions and body language, from healthcare providers were reported, which created significant obstacles to accessing ART and healthcare generally. For example, an aravani participant reported discrimination in accessing ART at a government hospital:
When [patients] come to get ART, ‘normal’ women will be given ART and sent early. But when they [pharmacists] see people like us, there is laziness and they will say, “Wait for some time, I will give you ART. Let the crowd go first.”
A valid identitycard/proof of address is required for enrollment in government ART programs to enable follow-up. Recent Tamil Nadu government initiatives have allowed some aravanis to obtain food ration cards in their chosen name and gender; however some aravanis who live with their biological family have their male name listed on their family ration card and are asked by ART center staff to register using that name. Although some aravanis begrudgingly comply with this requirement to get free ART, others refuse to access ART at the expense of humiliation, and denial of their gender identity and human dignity.
Additional barriers for aravanis were being admitted to a male ward where, in some government hospitals, they are forced to wear male clothing, and being mocked or taunted irrespective of whether they stand in male or female queues for admission. According to an aravani participant:
[We cannot] stand in the queue for males or females. We are bad-mouthed by people standing there as well as by hospital staff. [We] ran away from [our parents’] home being convinced that we are women. Now our life has become worse than that of a dog. Why should we lose our respect to get this medicine? Instead I would rather die…saying this, I walked away [from the ART center].
Many participants reported that counseling services in government hospitals have substantially improved over the years; and some reported receiving adequate information about ART. However, some participants and key informants expressed dissatisfaction with the quality of counseling services, expecting more time and treatment details. Some expressed concerns about lack of aravani and kothi counselors, lack of privacy and confidentiality, and inadequate time for counseling. As an aravani key informant reported, “They are counselors from the general population. How could they have that much sensitivity or understanding?” A kothi key informant described the substandard counseling milieu, which presents threats to confidentiality:
They don’t even have a door; there is only one screen. [Others] keep coming and going … peep in to check whether the talk is over or not… She [counselor] also does not have time. Many are waiting…There is no privacy.
Key informants further explained that many government hospitals lack adequate space to enable them to follow national guidelines to ensure confidentiality through providing HIV counseling in private.
Participants and key informants reported that targeted interventions among kothis and aravanis focused extensively on HIV prevention, and condom promotion and distribution, with relatively little attention to ART. Key informants reported that lack of training about ART among outreach workers and peer educators contributed to this shortcoming. An aravani participant explained:
If they become HIV positive, counseling [in NGOs] will be given like this: “Take this food. Take healthy food. We have to increase the CD4 count,” and so on. Even in NGOs, it is rare for them to talk about “there are first-line and second-line in it [ART].” Only 20% talk about that…they talk about ART only after seeing the CD4 count. Before that, no one talks about ART.
Knowing one’s HIV status is pivotal to getting appropriate treatment, including ART. However, low HIV risk perception and a preference not to know one’s status, intertwined with fears of stigma, discrimination, and rejection from others, including one’s own community, presented barriers to HIV testing among kothis and aravanis. An aravani participant reported the reason for not undergoing HIV testing: “if our community comes to know [about testing HIV-positive], they will isolate us.” Consequently, some got tested for HIV only after experiencing severe or prolonged symptoms suggestive of HIV illness; even then some declined follow-up or treatment for fear of disclosure of their HIV status.
Even after learning of their HIV diagnosis and medical eligibility for ART, fatalism among some kothis and aravanis fostered reluctance to initiate ART. Fatalism appeared to be related to lack of social support from (and non-disclosure to) family members and not having a steady male partner. A kothi key informant reported a typical reaction: “We don’t have a married life. Why do we have to live?” However, learning about people on ART who were living healthy lives encouraged some to initiate ART. A kothi participant reported:
We will tell them [other kothis], “See, there are people who live for 20 years with HIV. We will not die immediately after becoming positive. If we take proper food and ART we shall live for many years.”
Kothis and aravanis reported that family/social-level factors, such as eviction from home, rejection, economic hardship and violence, led them to use alcohol as a coping mechanism. As described by an aravani key informant:
You asked us why we consume alcohol… several reasons: we were evicted from our home by our own family members. Now…we don’t have a decent job for our livelihood. On top of everything, we face problems from our [sex work] customers and beelis [ruffians]. To forget all these sufferings, we drink. If we need to stop drinking alcohol, you need to stop all these problems we face.
Because healthcare providers emphasized that patients on ART should not consume alcohol, some kothis and aravanis did not initiate ART to avoid the need to stop drinking alcohol and associated withdrawal symptoms. Some also feared side effects if they resumed alcohol use while on ART.
Key informants reported that kothis and aravanis lacked in-depth knowledge about ART, including benefits, when to initiate therapy and medical eligibility criteria. Although healthcare providers stress that there is no cure for HIV, some alternative/traditional medicine practitioners promise such cures, which lures some kothis and aravanis to try these remedies instead of ART. As a kothi participant explained, “In Siddha and Unnani they [some practitioners] say that they cure it [HIV] 100%; they do what the English medicine cannot. So [people] believe this and they go.”
HIV-positive kothis and aravanis in Chennai face multi-level barriers that prevent or significantly delay their accessing ART, even with free ART programs operational in government hospitals. In order to access a life-saving intervention, many aravanis and kothis must confront formidable risks of losing family and peer support, and economic subsistence, in addition to bureaucratic challenges, outright discrimination and affronts to their human dignity. Failure to access ART seems less contingent on individual-level misunderstanding, fear and lack of information, and on balance may constitute a reasonable choice given the monumental risks. The imperative of ensuring equal access to ART among kothis and aravanis raises the need to radically shift this balance so that accessing ART, despite potential challenges, becomes a well-supported and sensible option.
Barriers to ART access emerged at family/social, healthcare system and individual levels. The primary individual-level barrier was integrally linked to the family/social and healthcare system levels: many kothis and aravanis feared serious adverse consequences if their HIV-positive status were revealed to others. Strong motivations to keep one’s HIV-positive status and same-sex attraction secret were interconnected with sexual prejudice against MSM and transgender women, and HIV stigma prevalent in families, the healthcare system, and the larger society(Chakrapani et al., 2007; Newman, Chakrapani, Cook, Shunmugam, & Kakinami, 2008a). HIV stigma was present within kothi and aravani communities as well (Chakrapani et al., 2008). Anticipated consequences of disclosure— rejection by family, eviction from home, social isolation, loss of subsistence income from sex work, and maltreatment within the healthcare system—presented powerful disincentives to accessing ART. As a result of wide-ranging fears of disclosure, many kothis and aravanis postponed initiating ART or even learning their HIV status for as long as possible, until they became symptomatic. Thus, stigma and discrimination were central to multi-level barriers to ART access.
Fatalism also led some kothis and aravanis not to pursue ART. This psychological challenge was linked to fear of adverse consequences of HIV disclosure, which posed an intransigent dilemma: forego one’s family, friends, community, and income from sex work, or forego treatment.
Secondary to stigma and discrimination was limited knowledge about ART. Many kothis and aravanis in Chennai have adequate general knowledge about HIV (NACO, 2007b; Newman, Chakrapani, Cook, Shunmugam & Kakinami, 2008b), and receive appropriate peer counseling about HIV and positive prevention; but the present study indicated a lack of knowledge/education about ART.
Given multi-level barriers to ART access related to stigma and discrimination, interventions to facilitate ART uptake should address multiple constituencies: the general public, healthcare providers, and the kothi and aravani communities themselves. In addition to public campaigns to promote acceptance and combat discrimination against kothis, other subgroups of MSM, and aravanis, both those living with HIV and HIV-negative, targeted interventions are needed for healthcare providers and staff at government ART centers. Provider and staff education should include training on: 1) non-judgmental, non-discriminatory counseling and treatment services; 2) specific challenges faced by kothis and aravanis regarding ART access and adherence; and, 3) counseling needs regarding mental health, alcohol abuse, and disclosure of HIV status and sexuality to family and peers. Training and utilization of kothi and aravani counselors would also fill an important gap. Healthcare system guidelines should be developed in consultation with aravani and kothi communities to address discrimination based on sexual orientation and gender identity. Improvement of infrastructure and staffing levels at government ART centers is also necessary to allow adequate time and privacy for counseling.
HIV-related stigma and discrimination in kothi and aravani communities should also be addressed, with the help of community leaders, through targeted interventions aimed at creating supportive peer norms.
A limitation of this study was the small purposive sample of kothis and aravanis recruited from CBOs. Kothis and aravanis not associated with CBOs may experience greater barriers to ART access than did kothis and aravanis in our sample. Additionally, other subpopulations of MSM, such as gay- or bisexual-identified MSM (Chakrapani et al., 2007; Setia et al., 2008), may experience different barriers to ART access.
In conclusion, we identified an array of barriers to accessing free ART at government centers among kothis and aravanis in Chennai. Interestingly, many of these barriers were similar to barriers faced by female sex workers in Chennai (Chakrapani, Newman, Shunmugam, Kurian, & Dubrow, 2009). India needs a national policy and action plan to address barriers to ART access at family/social, healthcare system, and individual levels for all marginalized groups.
We thank all study participants for openly sharing their personal life experiences, views, and opinions. We thank the following Chennai-based community-based organizations for their help in data collection: Social Welfare Association for Men (SWAM), Sahodaran, South India Positive Transgender Foundation (SIPTF), and Transgender Rights Association. We thank Mr. Sandy Michael and Mr. D. Dinesh Kumar for assisting in data analysis. We also appreciate the hard work and commitment of our community-based field research team. And our sincere thanks to Indian Network for People Living with HIV/AIDS board members especially Mr. K.K. Abraham and Mr. Kh. (Bobby) Jayanta Kumar for their guidance and support. This study was supported by the International Treatment Preparedness Coalition (ITPC) and the ‘Sarvojana’ project funded by the European Union (EU)/The Humanist Institute for Development Cooperation (HIVOS). The project was also supported by the Yale AIDS International Training and Research Program (5 D43 TW001028), funded by the Fogarty International Center of the U.S. National Institutes of Health. Dr. Newman was supported in part by the Canada Research Chairs Program.