Too poor to be treated: bottom-up advocacy by HIV+ activists in Khayelitsha and Lusikisiki, South Africa.

Doctoral Degree. University of KwaZulu-Natal, Durban.ABSTRACT The attainment of development is often contingent on the promise that those affected can meaningfully participate in policy-making processes and decision making. However, over the past decades, there has been limited to no scholarly consensus about the meaning and purpose of these promises of emancipation. Therefore, this study contributes to theoretical and practical responses to popular participation within systems of power that shapes e condition through development occur. This study employed qualitative approaches using in-depth interviews with and participatory observation of key informants to answer the central research question: to critically examine the shift in AIDS activist advocacy tactics after the antiretroviral therapy (ARTT) rollout by people and social movements affected by HIV/AIDS in Khayelitsha and Lusikisiki, within a national context of dramatic changes in the balance of forces in 2003. The study found that state-led participation has elements of tyranny. If scholarship analysis of popular AIDS activism ended in 2003, that would have been short-sighted. At that juncture, the activists in Khayelitsha and Lusikisiki, instead of retreating, stirred collective pressure to compel the South African government to deliver ART to save lives. During policy implementation, protest action may diminish during implementation of policy and some may fall in abeyance, which does not necessarily necessitate retreat. The ART rollout takes place at local levels, which then meant that activists had to revive dormant participatory structures through popular agency to democratised healthcare. Newer typologies of participation and the conditions that facilitated these forms of engagement emerged. These included the variants in participation during policy implementation, demonstrating activists’ undertaking in forcing the state to deliver services, which had implications for the survival of their movements going forward. Activists shifted their tactics from traditional antagonistic engagements with the state to the use of a dual-tactical approach to allow for heterogeneous engagement with the state at various levels. Activists made health clinics sites of contestation and protesting against the imposition of unattainable ART accreditation, rejecting bureaucratic state power in policy implementation by rationing service delivery. Activists further sustained their engagement with provincial public officials by combining lawyering and popular protests, as direct action forced the state to release the ART rollout plan. This shows that grassroots activists’ collective action can force the state to concede to popular pressure while losing other battles, as shown by the rationing of ART that continued. The findings suggest that movements ought to shift tactics, allowing for modifications in approaches and taking advantage of various state ruptures at provincial levels to achieve their social movement goals. The study concluded that there are glaring limits to participation because movement resources can influence the ongoing ability of activists to continue fighting. That is, the practice of participation is complex and does not inherently amount to movement decline. IQOQA LOCWANINGO Ukufezekiswa kwentuthuko ngokuvamileyo kuncike kwisithembiso sokuthi labo abathintekile bangabamba iqhaza ngendlela enohlonze nephusile ezinqubweni zokwenziwa kwezinqubomgomo kanye nasekuthathweni kwezinqumo. Kodwa-ke, kumashumi-nyaka edlule bekukuncane kakhulu noma-ke nje kungekho neze ukuvumelana phakathi kwezifundiswa mayelana nokuthi zisho ukuthini lezi zithembiso zenkululeko futhi yini inhloso yazo. Ngakho-ke, lolu cwaningo lufaka isandla ezimpendulweni zethiyori kanye nalezo eziphathekayo maqondana nokubamba iqhaza kweningi labantu ngaphansi kwesimo-ngqikithi esinezinhlelo zamandla ezibumba isimo okungenzeka ngaphansi kwaso intuthuko. Lolu cwaningo lusebenzise izindlela-kusebenza ezigxile ekutholeni izincazelo kanye nokuqonda okujulile (qualitative approaches) ngokusebenzisa izinhlolo-mbono ezijulile kanye nendlela-kucwaninga yokubukela nokuqaphela lokho okwenziwa ngababambiqhaza bocwaningo, lapho abahlinzeki bolwazi abangongoti bephendula umbuzo ongumongo wocwaningo: ukubukisisa nokuhlolisisa ngokujulile nhlangothi zonke ukuguquka okwenzekile kumasu namaqhinga ezishoshovu emkhankasweni wokweseka impi yokulwisana nengculazi kulandela ukuqaliswa kwezinqubo zokukhishwa nokusatshalaliswa kwemishanguzo yokudambisa ingculazi (I-ART) okuwuguquko oluqondene nabantu kanye nezinhlangano ezithintekile ngenxa yesandulela-ngculazi nengculazi eKhayelitsha kanye naseLusikisiki, ngaphansi kwesimo-ngqikithi sikazwelonke lapho ngowezi-2003 kwaba khona uguquko-simo lwamandla. Lolu cwaningo lwathola ukuthi ukubamba iqhaza okuholwa ngumbuso kunabo ubundlovukayiphikiswa obuthile. Ukube ukuhlaziya kwezifundiswa ubushoshovu obunamandla bokugqugquzela impi yokulwisana nengculazi kwafinyelela esiphelweni ngowezi-2003, lokho bekuyosho ukungabi neze nomqondo ophusile. Kulelo qophelo, izishoshovu eKhayelitsha kanye naseLusikisiki esikhundleni sokuhoxa nokuhlehlela emuva zafaka ingcindezi ngokuhlanganyela, ngenhloso yokuphoqelela uhulumeni waseNingizmu Afrika ukuthi ahlinzeke ngemishanguzo yokudambisa ingculazi ukuze kusindiswe izimpilo zabantu. Ngesikhathi sokuqaliswa kwenqubomgomo, kungenzeka inciphe imibhikisho futhi kungenzeka eminye ithi ukumiswa kancane, kodwa-ke nakuba kunjalo lokho akusho neze ukuthi ngalokho izishoshovu kumele zihoxe noma zihlehlele emuva. Ukuhlinzekwa kwemishanguzo kwenzeka emazingeni ohulumeni basekhaya futhi lokho kwadinga ukuthi izishoshovu zivuselele kabusha izinhlaka zokubamba iqhaza ezabe sezifadalele ngokusebenzisa ukuqwashiswa komphakathi wonkana ukuze kuqinisekiswe ukutholakala kosizo lwezempilo oluhlinzekwa futhi lulawulwe ngokuhambisana Ukufezekiswa kwentuthuko ngokuvamileyo kuncike kwisithembiso sokuthi labo abathintekile bangabamba iqhaza ngendlela enohlonze nephusile ezinqubweni zokwenziwa kwezinqubomgomo kanye nasekuthathweni kwezinqumo. Kodwa-ke, kumashumi-nyaka edlule bekukuncane kakhulu noma-ke nje kungekho neze ukuvumelana phakathi kwezifundiswa mayelana nokuthi zisho ukuthini lezi zithembiso zenkululeko futhi yini inhloso yazo. Ngakho-ke, lolu cwaningo lufaka isandla ezimpendulweni zethiyori kanye nalezo eziphathekayo maqondana nokubamba iqhaza kweningi labantu ngaphansi kwesimo-ngqikithi esinezinhlelo zamandla ezibumba isimo okungenzeka ngaphansi kwaso intuthuko. Lolu cwaningo lusebenzise izindlela-kusebenza ezigxile ekutholeni izincazelo kanye nokuqonda okujulile (qualitative approaches) ngokusebenzisa izinhlolo-mbono ezijulile kanye nendlela-kucwaninga yokubukela nokuqaphela lokho okwenziwa ngababambiqhaza bocwaningo, lapho abahlinzeki bolwazi abangongoti bephendula umbuzo ongumongo wocwaningo: ukubukisisa nokuhlolisisa ngokujulile nhlangothi zonke ukuguquka okwenzekile kumasu namaqhinga ezishoshovu emkhankasweni wokweseka impi yokulwisana nengculazi kulandela ukuqaliswa kwezinqubo zokukhishwa nokusatshalaliswa kwemishanguzo yokudambisa ingculazi (I-ART) okuwuguquko oluqondene nabantu kanye nezinhlangano ezithintekile ngenxa yesandulela-ngculazi nengculazi eKhayelitsha kanye naseLusikisiki, ngaphansi kwesimo-ngqikithi sikazwelonke lapho ngowezi-2003 kwaba khona uguquko-simo lwamandla. Lolu cwaningo lwathola ukuthi ukubamba iqhaza okuholwa ngumbuso kunabo ubundlovukayiphikiswa obuthile. Ukube ukuhlaziya kwezifundiswa ubushoshovu obunamandla bokugqugquzela impi yokulwisana nengculazi kwafinyelela esiphelweni ngowezi-2003, lokho bekuyosho ukungabi neze nomqondo ophusile. Kulelo qophelo, izishoshovu eKhayelitsha kanye naseLusikisiki esikhundleni sokuhoxa nokuhlehlela emuva zafaka ingcindezi ngokuhlanganyela, ngenhloso yokuphoqelela uhulumeni waseNingizmu Afrika ukuthi ahlinzeke ngemishanguzo yokudambisa ingculazi ukuze kusindiswe izimpilo zabantu. Ngesikhathi sokuqaliswa kwenqubomgomo, kungenzeka inciphe imibhikisho futhi kungenzeka eminye ithi ukumiswa kancane, kodwa-ke nakuba kunjalo lokho akusho neze ukuthi ngalokho izishoshovu kumele zihoxe noma zihlehlele emuva. Ukuhlinzekwa kwemishanguzo kwenzeka emazingeni ohulumeni basekhaya futhi lokho kwadinga ukuthi izishoshovu zivuselele kabusha izinhlaka zokubamba iqhaza ezabe sezifadalele ngokusebenzisa ukuqwashiswa komphakathi wonkana ukuze kuqinisekiswe ukutholakala kosizo lwezempilo oluhlinzekwa futhi lulawulwe ngokuhambisana nezifiso zesiguli futhi sihlinzekwe ngolwazi ukuze sikwazi ukuqikelela impilo yaso. Ocwaningweni kuvele izinhlobo ezintsha zemikhakha yokubamba iqhaza ngokwehlukana kwayo kanye nezimo ezenza ukuthi zenzeke lezi zinhlobo zokuzibandakanya. Lokhu kwabandakanya nezinhlobo ezihlukile zokubamba iqhaza ngenkathi kuqaliswa ukusebenza kwenqubomgomo okuyinto ebonisa isibopho nokuzimisela kwezishoshovu ekuphoqeleleni umbuso ukuthi uhlinzeke ngezidingongqangi futhi lokhu kuyinto engaba nomthelela ekuqhubekeleni phambili nokungashabalali kwemibutho yezishoshovu kusuka manje kuya phambili. Izishoshovu zaguqula amasu namaqhinga azo kusuka ekuxhumaneni kwazo nombuso okujwayelekile lapho bezibonisa ulaka nethukuthelo yazo zaqoka ukusebenzisa indlela-kusebenza yamasu namaqhinga emkhakhambili ukuze lokho kuvumele ukuxhumana nombuso okuxubile okwenzeka emazingeni ahlukahlukene. Izishoshovu zenza imitholampilo yezempilo yaba yizizinda zokuphikisa nokubhikishela ukufakwa ngenkani kwezidingo eziqinile zezimvume-kugunyazwa kwemishanguzo yokudambisa ingculazi ezingatholakali neze kalula, ukuchithwa kwamandla ombuso agxile ezinqubweni eziyinkimbinkimbi futhi ezibambezelayo ekuqalisweni kokusebenza kwenqubomgomo ngokubeka imikhawulo nokulawula ukuhlinzekwa kwezidingongqangi. Izishoshovu zaqinisekisa futhi ukusimama nokuqhubekela phambili kokuxhumana kwazo nabasebenzi bakahulumeni ezifundazweni ngokusebenzisa abameli nomthetho kanye nemibhikisho yomphakathi wonkana njengezinyathelo-ngqo zokuphoqelela umbuso ukuthi uhlinzeke ngohlelo lokukhishwa kwemishanguzo yokudambisa ingculazi. Lokhu kuyabonisa ukuthi izinyathelo ezithathwa ngokuhlanganyela yizishoshovu emazingeni aphansi omphakathi zingawuphoqelela umbuso ukuthi uyivume induku yengcindezi evela emphakathini jikelele wenze lokho okufunwa ngumphakathi futhi kusenjalo ngakolunye uhlangothi nazo izishoshovu zibe ziyivuma eyokuhluleka nokungaphumeleli kweminye imizabalazo yazo njengalokhu kwabonakala ngokuqhubeka kwemikhawulo ebekiwe yokulawulwa kohlelo lokukhishwa kwemishanguzo. Imiphumela etholakale ocwaningweni ibonisa ukuthi imibutho yezishoshovu kumele iguqule amasu namaqhinga ayo ukuze kuvunyelwe ukuguqulwa kwezindlela-kusebenza ngokuthi kusetshenziswe amathuba avela ngenxa yokungqubuzana nobunhlakanhlaka obukhona ezinhlakeni zombuso ezihlukahlukene emazingeni ezifundazwe ukuze zikwazi ukufezekisa izinjongo zazo zokumela nokulwela izimfuno nezidingo zomphakathi. Ucwaningo luveza umbono-siphetho othi kunemikhawulo ecace bha enciphisa futhi ivimbele ukubamba iqhaza kwabantu ngoba phela izinsiza zemibutho yezishoshovu zingaba nomthelela emandleni nekhono lezishoshovu lokuqhubeka nokulwa kanye nokuzabalaza. Okuyinto ebonisayo ukuthi ukubamba iqhaza kuyinto eyinkimbinkimbi futhi okungeke kwathiwa noma kanjani izoholela ekufadalaleni kwemibutho yezishoshovu

Shifting consciousness and challenging power: Women activists and the provision of HIV/AIDS services

In 2003, the South African government shifted AIDS policy making HIV treatment available in the public healthcare sector. The antiretroviral roll out, while hailed as a success, has required continued activism to ensure genuine implementation. Women particularly the poor, traditionally bear the brunt of the impact of HIV/AIDS socially and economically. Very often they do this in most marginalised spaces. This paper draws on theories of participation and empowerment to understand female activism during the period of antiretroviral roll out in South Africa. The paper seeks to understand how processes of empowerment linked with the first stage - access to ARVs impacted on the second stage - ARV roll out .It also considers how female activists understand their empowerment in the context of their role. The focus is grassroots activism females in Lusikisiki and Khayelitsha. This paper draws from a qualitative study on bottom-up policy advocacy utilising participatory observation and in-depth interviews with activists and civil society organisations. The main findings are that during the roll out phase of the HIV/AIDS campaign women activists worked from transformed "ways of thinking and being" in terms of HIV/AIDS and in terms of their role in the struggle for health rights. Their contesting embedded notions of power contributed to the democratisation of HIV/AIDS services. The transformation also caused shifts in the ways women mobilised, framed their understanding of the struggle and accessed participation spaces

Improving men's participation in preventing mother-to-child transmission of HIV as a maternal, neonatal, and child health priority in South Africa

Wessel van den Berg and colleagues outline how increasing male partner involvement in efforts to reduce mother-to-child HIV transmission in South Africa may improve maternal and infant outcomes

Effectiveness of Patient Adherence Groups as a Model of Care for Stable Patients on Antiretroviral Therapy in Khayelitsha, Cape Town, South Africa

Abstract: Background: Innovative models of care are required to cope with the ever-increasing number of patients on antiretroviral therapy in the most affected countries. This study, in Khayelitsha, South Africa, evaluates the effectiveness of a group-based model of care run predominantly by non-clinical staff in retaining patients in care and maintaining adherence. Methods and Findings: Participation in ‘‘adherence clubs’’ was offered to adults who had been on ART for at least 18 months, had a current CD4 count .200 cells/ml and were virologically suppressed. Embedded in an ongoing cohort study, we compared loss to care and virologic rebound in patients receiving the intervention with patients attending routine nurse-led care from November 2007 to February 2011. We used inverse probability weighting to estimate the intention-totreat effect of adherence club participation, adjusted for measured baseline and time-varying confounders. The principal outcome was the combination of death or loss to follow-up. The secondary outcome was virologic rebound in patients who were virologically suppressed at study entry. Of 2829 patients on ART for .18 months with a CD4 count above 200 cells/ml, 502 accepted club participation. At the end of the study, 97% of club patients remained in care compared with 85% of other patients. In adjusted analyses club participation reduced loss-to-care by 57% (hazard ratio [HR] 0.43, 95% CI = 0.21–0.91) and virologic rebound in patients who were initially suppressed by 67% (HR 0.33, 95% CI = 0.16–0.67). Discussion: Patient adherence groups were found to be an effective model for improving retention and documented virologic suppression for stable patients in long term ART care. Out-of-clinic group-based models facilitated by non-clinical staff are a promising approach to assist in the long-term management of people on ART in high burden low or middleincome settings

Civil society leadership in the struggle for AIDS treatment in South Africa and Uganda

Includes abstract.Includes bibliographical references.This thesis is an attempt to theorise and operationalise empirically the notion of ‘civil society leadership’ in Sub-Saharan Africa. ‘AIDS leadership,’ which is associated with the intergovernmental institutions charged with coordinating the global response to HIV/AIDS, is both under-theorised and highly context-specific. In this study I therefore opt for an inclusive framework that draws on a range of approaches, including the literature on ‘leadership’, institutions, social movements and the ‘network’ perspective on civil society mobilisation. This framework is employed in rich and detailed empirical descriptions (‘thick description’) of civil society mobilisation around AIDS, including contentious AIDS activism, in the key case studies of South Africa and Uganda. South Africa and Uganda are widely considered key examples of poor and good leadership (from national political leaders) respectively, while the Treatment Action Campaign (TAC) and The AIDS Support Organisation (TASO) are both seen as highly effective civil society movements. These descriptions emphasise ‘transnational networks of influence’ in which civil society leaders participated (and at times actively constructed) in order to mobilise both symbolic and material resources aimed at exerting influence at the transnational, national and local levels

A living WHO guideline on drugs for covid-19

CITATION: Agarwal, A. et al. 2022. A living WHO guideline on drugs for covid-19. British Medical Journal, 370. doi:10.1136/bmj.m3379The original publication is available at https://jcp.bmj.com/This living guideline by Arnav Agarwal and colleagues (BMJ 2020;370:m3379, doi:10.1136/bmj.m3379) was last updated on 22 April 2022, but the infographic contained two dosing errors: the dose of ritonavir with renal failure should have read 100 mg, not 50 mg; and the suggested regimen for remdesivir should have been 3 days, not 5-10 days. The infographic has now been corrected.Publishers versio

Male Partners’ Roles in Infant Feeding Practices: Perspectives of Black Mothers Living with HIV in Three Countries

Currently, mothers living with HIV (LWH) are challenged with different infant feeding guidelines depending on the country they are living in. This may contribute to confusion, stress, and mental health issues related to decision-making about infant feeding as a mother LWH. Yet, their male partners as their closest social capital have important roles to play in reducing or aggravating this psychosocial distress. Hence, we describe the role of male partners in supporting mothers who are living with HIV in the context of infant feeding. It is based on the results of a recent study of the socio-cultural context of infant feeding among Black mothers LWH in three countries; Canada, the USA, and Nigeria. The study was a tri-national, mixed-methods, community-based participatory research (CBPR) project, informed by postcolonialism and intersectionality theories. This paper is based on the qualitative component of the study. It was a focused ethnography (FE) involving 61 in-depth individual interviews (IDIs) with Black- mothers LWH. Thematic analysis guided the interpretation of these data, and trustworthiness was established through member-checking. Black mothers LWH acknowledged the various support roles that their male partners play in easing the practical and emotional burdens of infant feeding in the context of HIV. Male partners’ roles were captured under three sub-themes: (1) Practical help, (2) Protection of the family, and (3) Emotional support and sounding board. These findings have explicated the evolving ways in which male partners support ACB mothers LWH to promote positive infant feeding outcomes, as well as enhance the emotional and physical well-being of both mother and infant. Our study has explicated the evolving ways in which male partners support Black mothers LWH to promote positive infant feeding outcomes, as well as enhance the emotional and physical well-being of both mother and infant

Estimated effect of club participation from unweighted and weighted Cox models.

<p>Weighted model with baseline covariates estimates the parameters of a marginal structural model, adjusting for confounding due to measured time-dependent covariates.</p

Factors associated with adherence club enrolment.

*<p>Restricted to patients who had virologic suppression at study entry, n = 2517.</p>**<p>Hazard ratios were derived from a pooled unweighted logistic regression model fit on the subsample of person-months of follow-up for which no club participation had yet occurred through the previous months.</p>†<p>P-value based on Wald test.</p><p>LTF: Loss to follow-up; ART: Antiretroviral therapy; WHO: World Health Organization; HR: Hazard Ratio; CI: Confidence interval.</p