HIV self-testing for couples in resource-poor contexts in urban Malawi Nicola Desmond Wellcome Trust Fellow Liverpool School of Tropical Medicine Malawi-Liverpool-Wellcome Trust Major Overseas Programme IAC, Melbourne, Australia July 21 st -26 th 2014

Human Rights concerns Increased risk of unmanaged anxiety Negative impacts by bypassing counseling Potential for coercive testing –3% participants in Blantyre, Malawi Lower test accuracy Lower linkage to care

HIVST in urban Malawi 16,600 adult residents –free access to 1 HIVST per year –semi-supervised via community- based counselors Testing in private –pre & post-test counseling –encouraged to include partner Linkage to confirmatory testing & care via counsellors to direct to study clinics 28 clusters: ~ 1,200 adults (16+) Primary clinics District hospital National HIV prevalence: 11.9% Doctors /1000 population: 0.02

Methods: 2 cohort studies Kumwenda et al 51 couples 12 months FU Mixed methods 12 months follow up –Face to face survey –Audio computer assisted self-interviews (ACASI) –Daily diary study –In-depth serial biographical interviews with both partners individually Desmond et al 17 couples 12 months FU Serial in-depth interviews – Both partners individually “Couples-testing” HIVST: 14% participants Malawi HTC: 14% clients “Couples-testing” HIVST: 14% participants Malawi HTC: 14% clients

EXPLORING NEGATIVE IMPACTS THROUGH BYPASSING COUNSELING

Deconstructing couples HIVST: access & presentation Majority of couples came into HIVST through counselor-initiated approaches Most couples testers had previously tested with a partner

Deconstructing couples HIVST: steps taken together Majority of men & women in couples received pre-test counseling with a partner (69%) Men more likely have received both pre- AND post test counseling

Disclosure enhanced High proportion (99%) of participants shared results with partner –whether or not they read the results at the same time Use of HIVST to disclose previously known +ve status common and motivated by: –Guilt –desire to foster openness –mistaken assumption of concordance & ensuring access to care

Assumptions of HIV concordance ‘… this is why I invited the counselor to test us after realizing that it was not good that I should continue hiding that I am HIV+ve from her … I expected that she would also be positive. I did not believe it when her result was negative after all these years that I have lived with her’ Male partner, HIV positive, Discordant couple

GENDERED NATURE OF DECISION-MAKING

Decision-making: individual motivations for couples testing Known to be positive Self-checking “cure”: known HIV status –Through beliefs in cure through prayer –Through long-term ART Linking back into HIV care after ‘defaulting’ From the perspective of being in a relationship Assessing the strength and fidelity

Evidence of coercive testing? Coercive testing reported by 3% in parent study 78% of individuals in couples study reported they had not been influenced at all to test Some felt pressure to test from partner & unable to ‘opt-out’ –To show commitment to relationship –To remove existing mistrust

Gendered response to acceptable force –Lower levels of coercion reported for women –Men *more* likely to report coercion from partner –Gender-based violence normalized and pervasive Marital Status% of women who experienced physical violence since age 15 Number of women EverPast 12 mos Currently married 28.3%15.9%6,856 Divorced / separated 42.2%16.5%5,832 Widowed14.5%2.1%1,365 Never married23.1%10.8%1,647 DHS Malawi 2010

Male pressure to test ‘My husband just gave me the test-kit and told me to test. I feel that this is a problem … I did not have a choice to say no … my husband initially went to test alone. According to his test results, he also wanted me to get tested … so I was in a dilemma’ HIV-ve wife in discordant partnership

Female pressure to test ‘When I got the kit I took two days without testing, then my wife said that I won’t eat that day if I don’t test. She went to the bedroom and poured water on my clothes. There was force, I knew that if I don’t test then there won’t be sex for me’ Husband in concordant HIV –ve couple

HIVST empowering women in relationships? Women able to break existing barriers – household decision-making – power dynamics – resident volunteers reinforce and destigmatise testing and couples testing Gendered response to “acceptable” force –Men more likely to report coercion from partner than women

Conclusions to date Low levels of formal “couples HIVST” overall –How best to promote couples HIVST for “first-time” testers? The option of HIVST is empowering for women wanting to promote couples testing –Important social reinforcement from community counsellor Decisions shaped by gender and power relations within the household Need for more research on coercion –Unpacking the implications of gendered social norms and acceptability of GBV Discordancy identified through HIVST presents complex challenges

Acknowledgements Mr Moses Kumwenda - MLW Dr Sally Theobald - LSTM Dr Miriam Taegtmeyer - LSTM Professor Liz Corbett – LSHTM Dr Mavuto Mukaka – Johns Hopkins, US Dr Ireen Namakhoma - Reach Trust Dr Lignet Chepuka - LSTM Mr Simon Makombe - MoH Malawi Professor Janet Seeley - MRC Uganda Professor David Lalloo - LSTM Professor Rob Heyderman - LSTM Ms Effie Chipeta - MLW Ms Wezzie Lora - MLW Community men & women in urban Blantyre

Uptake since introduction of HIVST Couples uptake Round 1: 932 (14%) couples of 13,655 tests Round 2 (Repeat testing): 1201 (16%) couples of 15,009 tests

Exploring the social impacts of HIVST in couples Decision-making dynamics Nature & extent of coercive testing Sexual behaviour & risk compensation Gendered household relations Role of counseling