We still lack good data on many specific populations that are most severely affected by HIV

Editor’s notes: Transgender women are often under-represented in HIV research.  Yet they face many challenges in day to day life with discrimination at many levels.  Employment opportunities are few and many transgender women make a living through sex work.  It is well recognized that they are at specific and increased risks of HIV. Yet many intervention trials group them with gay men and other men who have sex with men, often meaning that the results cannot be disaggregated into more meaningful categories.  The number of transgender women in particular studies is also often too small to make strong conclusions from the data they provide to the study.  So it is encouraging to see Grinsztejn and colleagues establishing a major study specifically in the community of transgender women in Rio de Janeiro, Brazil.  The authors recruited 345 transgender women through a respondent driven sampling process.  This non-random approach is necessitated by the nature of the population, as it would not be possible to make a complete sampling frame from census or other documentation.  However, statistical approaches to make best estimates of population measures are available and the authors found that almost one third of the women were living with HIV and that 29% had not previously been tested for HIV.  The high frequency of other sexually transmitted infections highlights the need for better engagement and services not just for HIV but for their wider sexual and reproductive health and rights needs.

Another population that is under-researched is people with disabilities.  “There is a tribe of Ugandans . . . whose issues and needs have not been given their due and appropriate attention in the fight. By all indications, persons with disabilities have been forgotten, consciously and unconsciously. They represent the forgotten tribe” (Mwesigwa Martin Babu, 2005). Abimanyi-Ochom and colleagues used data collected during the 2011 Ugandan demographic and health survey, which included questions about disabilities for the first time.  While HIV knowledge is similar in those with and without disabilities, people living with disabilities reported indicators of increased risk of acquiring HIV.  Findings included slightly earlier sexual debut and a higher frequency of reported sexually transmitted infections.  Other studies have demonstrated that people living with disabilities may have lower self-esteem and self-efficacy and that abuse, including sexual abuse is more common among this group than among their peers.

The findings are reinforced by a study from Cameroon.  De Beaudrap and colleagues used the same questionnaire that had been used in the Uganda DHS (the Washington short set of questions on disability) to identify people living with disability in a random sample of the population in Yaounde.  The prevalence of HIV was almost twice as high among those with disability than among controls matched by age, sex and residential area.  In line with the discussion in the Ugandan paper, the authors in Cameroon found that women with disability were more likely to receive money for sex and to be victims of sexual violence.  Both of these characteristics were, not surprisingly, associated with still higher rates of HIV infection.  Both papers call for more and better data and we also need to develop and test interventions to reduce the burden of HIV among those living with disabilities.

Unveiling of HIV dynamics among transgender women: a respondent-driven sampling study in Rio de Janeiro, Brazil.

Grinsztejn B, Jalil EM, Monteiro L, Velasque L, Moreira RI, Garcia AC, Castro CV, Krüger A, Luz PM, Liu AY, McFarland W, Buchbinder S, Veloso VG, Wilson EC; Transcender Study Team. Lancet HIV. 2017 Apr;4(4):e169-e176. doi: 10.1016/S2352-3018(17)30015-2. Epub 2017 Feb 8.

Background: The burden of HIV in transgender women (transwomen) in Brazil remains unknown. We aimed to estimate HIV prevalence among transwomen in Rio de Janeiro and to identify predictors of newly diagnosed HIV infections.

Methods: We recruited transwomen from Rio de Janeiro, Brazil, by respondent-driven sampling. Eligibility criteria were self-identification as transwomen, being 18 years of age or older, living in Rio de Janeiro or its metropolitan area, and having a valid peer recruitment coupon. We recruited 12 seed participants from social movements and formative focus groups who then used peer recruitment coupons to refer subsequent peers to the study. We categorised participants as HIV negative, known HIV infected, or newly diagnosed as HIV infected. We assessed predictors of newly diagnosed HIV infections by comparing newly diagnosed with HIV-negative participants. We derived population estimates with the Respondent-Driven Sampling II estimator.

Findings: Between Aug 1, 2015, and Jan 29, 2016, we enrolled 345 eligible transwomen. 29·1% (95% CI 23·2-35·4) of participants had no previous HIV testing (adjusted from 60 participants), 31·2% (18·8-43·6) had HIV infections (adjusted from 141 participants), and 7·0% (0·0-15·9) were newly diagnosed as HIV infected (adjusted from 40 participants). We diagnosed syphilis in 28·9% (18·0-39·8) of participants, rectal chlamydia in 14·6% (5·4-23·8), and gonorrhoea in 13·5% (3·2-23·8). Newly diagnosed HIV infections were associated with black race (odds ratio 22·8 [95% CI 2·9-178·9]; p=0·003), travesti (34·1 [5·8-200·2]; p=0·0001) or transsexual woman (41·3 [6·3-271·2]; p=0·0001) gender identity, history of sex work (30·7 [3·5-267·3]; p=0·002), and history of sniffing cocaine (4·4 [1·4-14·1]; p=0·01).

Interpretation: Our results suggest that transwomen bear the largest burden of HIV among any population at risk in Brazil. The high proportion of HIV diagnosis among young participants points to the need for tailored long-term health-care and prevention services to curb the HIV epidemic and improve the quality of life of transwomen in Brazil.

Abstract access [1] 

HIV/AIDS knowledge, attitudes and behaviour of persons with and without disabilities from the Uganda demographic and health survey 2011: differential access to HIV/AIDS information and services.

Abimanyi-Ochom J, Mannan H, Groce NE, McVeigh J  PLoS One. 2017 Apr 13;12(4):e0174877. doi: 10.1371/journal.pone.0174877. eCollection 2017.

Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV knowledge, attitudes and behaviour component of the 2011 Ugandan demographic and health survey, analysing a series of questions comparing those with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We found comparable levels of knowledge on HIV/AIDS for those with and those without disabilities in relation to HIV transmission during delivery (93.89%, 93.26%) and through breastfeeding (89.91%, 90.63%), which may reflect increased attention to reaching the community of persons with disabilities. However, several gaps in the knowledge base of persons with disabilities stood out, including misconceptions of risk of HIV infection through mosquito bites and caring for a relative with HIV in own household (34.39%, 29.86%; p<0.001; 91.53%, 89.00%; p = 0.001, respectively). The issue is not just access to appropriate information but also equitable access to HIV/AIDS services and support. Here we found that persons with multiple disabilities were less likely than individuals without disabilities to return to receive results from their most recent HIV test (0.60[0.41-0.87], p<0.05). HIV testing means little if people do not return for follow-up to know their HIV status and, if necessary, to be connected to available services and supports. Additional findings of note were that persons with disabilities reported having a first sexual encounter at a slightly younger age than peers without disabilities; and persons with disabilities also reported having a sexually transmitted disease (STD) within the last 12 months at significantly higher rates than peers without disabilities (1.38[1.18-1.63], p<0.01), despite reporting comparable knowledge of the need for safer sex practices. This analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys to provide information about persons with disabilities in Uganda in comparison to those without disabilities. These findings present a more complex and nuanced understanding of persons with disabilities and HIV/AIDS. If persons with disabilities are becoming sexually active earlier, are more likely to have an STD within the preceding 12 month period and are less likely to receive HIV test results, it is important to understand why. Recommendations are also made for the inclusion of disability measures in Uganda's AIDS Indicator Survey to provide cyclical and systematic data on disability and HIV/AIDS, including HIV prevalence amongst persons with disabilities.

Abstract [2] Full-text [free] access  [3]

Prevalence of HIV infection among people with disabilities: a population-based observational study in Yaoundé, Cameroon (HandiVIH).

De Beaudrap P, Beninguisse G, Pasquier E, Tchoumkeu A, Touko A, Essomba F, Brus A, Aderemi TJ, Hanass-Hancock J, Eide AH, Mac-Seing M, Mont D. Lancet HIV. 2017 Apr;4(4):e161-e168. doi: 10.1016/S2352-3018(16)30209-0. Epub 2017 Jan 24.

Background: In resource-limited settings, people with disabilities have been left behind in the response to HIV. In the HandiVIH study, we estimate and compare HIV prevalence and associated risk factors between people with and without disabilities.

Methods: In this cross-sectional, population-based, observational study, we used two-phase random sampling to recruit adults with disabilities and a control group matched for age, sex, and residential location from households of the general population. We used the Washington Group Short Set of Questions on Disability to identify people with disabilities. We administered an HIV test and a life-course history interview to participants. The primary outcome was the prevalence of HIV among participants with and without disabilities.

Findings: Between Oct 2, 2014, and Nov 30, 2015, we recruited 807 people with disabilities and 807 participants without disabilities from Yaoundé, Cameroon. 28 of 716 people in the control population had a positive HIV test result (crude prevalence 3·9%, 95% CI 2·9-5·3) compared with 50 of 739 people with disabilities (6·8%, 5·0-8·6; conditional odds ratio [OR] 1·7; p=0·04). Women with disabilities were more often involved in paid sexual relationships than were women without disabilities (2·5% vs 0·5%, p=0·05). People with disabilities were also at increased risk of sexual violence than were women without disabilities (11·0% vs 7·5%, OR 1·5; p=0·01). Sexual violence and sex work were strongly associated with increased risk of HIV infection among participants with disabilities but not among controls (OR 3·0, 95% CI 1·6-5·6 for sexual violence and 12·3, 4·4-34·6 for sex work). Analyses were done in men and women.

Interpretation: The higher prevalence of HIV infection in people with disabilities than people without disabilities reflects a higher exposure to HIV infection as well as the presence of disability-associated HIV infection. The susceptibility of people with disabilities to HIV infection seems to be shaped by social and environmental factors. Research is needed to inform firm recommendations on how to protect this vulnerable population.

Abstract access [4] 

HIV [6], HIV testing [7], Key populations [8], Sexual transmission [9]
Africa [10], Latin America [11]
Brazil [12], Cameroon [13], Uganda [14]
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