Walking the Talk - VSO

Walkingthe talkPutting women's rightsat the heart of theHIV and AIDS response

Cover Photo: Gideon Mendel/Corbis/ActionAidRuth Nkuya, who is living with HIV and AIDS and taking antiretroviral medication, talksto a participant in an HIV and AIDS education drama at the market place in NgwenyaLocation, Lilongwe, Malawi.AcknowledgementsAuthors: Nick Corby, Nina O'Farrell, Mike Podmore and Carmen Sepúlveda ZelayaEditors: Vicky Anning, Christian Humphries and Jenny DrezinResearch assistants: Maria Adelantado and Rebecca SinclairDesign: Academy Design PartnersWith thanks to all ActionAid and VSO staff, volunteers and partners whocontributed to the country research, including:Christy Abraham, Solomon Adebayo, Samia Ahmed, Maria Amjad, Juliet Bavuga,Smriti Bhattarai, Menno Bongers, Tasallah Chibok, Winston Chirombe, WedzeraiChiyoka, Dr. Rumeli Das, Charlotte Vidya Dais, Wubishet Desinet, Arturro Echeverria,Alma de Estrada, Nontuthuzelo Fuzile, Gezahagn Gezachew, Cynthia Gobrin-Sono,Shukria Gul, Innocent Hitayezu, Mohammed Kamal Hossain, David Lankester, AnchitaJahatik, Faiza Javaid, Sara Joseph, Farah Kabir, Lute Kazembe, Dr P. Manish Kumar,Etelvina Mahanjane, Vidyacharan Malve, Aveneni Mangombe, Shiji Malayil, Maia Marie,Sipho Mtathi, Dagobert Mureriwa, Lutfun Nahar, Hannah Pearce, Roberto Pinauin,Stephen Porter, Claudia Areli Rosales, Sanjay Singh, Sudhir Singh, Shyamalangi,Srinivas, Rimmy Taneja, Carine Terpanjian, Chinyere Udonsi, Whelma Villar-Kennedy,Lumeng Wang, Annemieke van Wesemael, Mohammad Arif Yusuf, Kazi KarishmaZeenat, Qingtian Zheng.With thanks for their input to:Avni Amin, Emma Bell, Brook Baker, Belinda Calaguas, Sara Cottingham, MartaMontesó Cullell, Leona Daly, Dorothy Flatman, Susana Fried, Gerard Howe, RichardHowlett, Beri Hull, Dieneke Ter Huurne, Clive Ingleby, Kate Iorpenda, Anne Jellema,Susan Jolly, Agnes Makonda Ridley, Joe McMartin, Malcolm McNeil, Bongai Mundeta,Neelanjana Mukhia, Fionnuala Murphy, Lina Nykanen, Leonard Okello, Luisa Orza,Jacqueline Patterson, Kousalya Periasamy, Fiona Pettitt, Maria Alejandra Scampini,Andy Seale, Aditi Sharma, Alan Smith, Asha Tharoor, Laura Turquet, Mary Wandia,Patrick Watt, Samantha Willan, Kemi Williams, Everjoice Win, Jessica Woodroffe.

ContentsContents 1Glossary 2Definitions 3Executive summary 51. Introduction 91.1. Structure of the report 101.2. Methodology 101.3. Overview: the feminisation of HIV and AIDS 111.4. Universal access: what is it and why arewe using it as a framework? 111.5. Why take a rights-based approachto universal access? 121.6. Achieving a rights-based approachto universal access 131.7. Gender, poverty and HIV and AIDS 132. Gender inequality, women’s rights andHIV and AIDS 142.1. Sexual and reproductive rights andviolence against women 142.2. Right to the highest attainable standardof health 162.3. Poverty and economic rights 172.4. Recommendations 184. Women’s rights and universal access toeffective treatment 304.1. Access to treatment: is there agender bias? 314.2. Adherence to treatment: it’s not justabout access 324.3. ART in resource limited settings 344.4. Recommendations 345. Women’s rights and universal access toHIV and AIDS care and support 365.1. What do we mean by ‘care and support’? 375.2. Women and girls’ access to care andsupport services 375.3. Women and girls providing care andsupport services 405.4. The impact of providing care andsupport on women and girls 425.5. Recommendations 476. Conclusion 507. Endnotes 523. Women’s rights and universal access toHIV prevention 203.1. Women’s right to education andinformation 213.2. Technologies and medical interventions:putting prevention directly in women'shands 243.3. Services: prevention of mother-to-childtransmission-Plus 273.4. Services: voluntary counsellingand testing 283.5. Recommendations 29Walking the talk putting women's rights at the heart of the HIV and AIDS response 1

GlossaryABC‘Abstinence, Be faithful, Condom use’INGOInternational non-governmentalapproachorganisationACHRAmerican Convention on Human RightsLGBTQILesbian, gay, bisexual, transsexual, queer,(1968)intersexACHPRProtocol of the African Charter on HumanMDGsMillennium Development Goalsprotocoland People’s Rights on the Rights ofWomen in Africa (2003)NGONon-governmental organisationAIDSAcquired Immune Deficiency SyndromePEPPost-exposure prophylaxisARTAntiretroviral therapyPEPFARPresident’s Emergency Plan for AIDS ReliefARVsAntiretroviralsPITCProvider initiated testing and counsellingCAAPConfidential Approach to AIDS PreventionPLWHAPeople living with HIV and AIDSCBOCommunity-based organisationPMTCTPrevention of mother-to-child transmissionCEDAWConvention on the Elimination of All FormsPPTCTPrevention of parent-to-child transmissionof Discrimination Against Women (1981)PWN+Positive Women’s Network, IndiaCHBCCommunity home-based careSIDASwedish International Development AgencyCRCConvention on the Rights of the ChildSRHSexual and Reproductive HealthCSOCivil society organisationSRHRSexual and Reproductive Health RightsDFIDDepartment for International DevelopmentSTISexually Transmitted InfectionUKTACTreatment Action CampaignFBOFaith-based organisationUDHRUniversal Declaration of Human RightsFGMFemale genital mutilation(1948)GBVGender-based violenceUNAIDSJoint United Nations Programme onHIVHuman Immunodeficiency VirusHIV/AIDSICPDInternational Conference on Population andUNFPAUnited Nations Population FundDevelopment (1994)UNIFEMUnited Nations Fund for WomenICCPRInternational Covenant on Civil and PoliticalVAW/GViolence against women and girlsRights (1966)VCTVoluntary counselling and testingICESCRInternational Covenant on Economic, Socialand Cultural Rights (1966)WHOWorld Health OrganizationICWInternational Community of Women Livingwith HIV/AIDS2 Walking the talk putting women's rights at the heart of the HIV and AIDS response

DefinitionsUniversal Universal access is the most recent andaccess comprehensive commitment made by the‘continuum’ international community in response toHIV and AIDS. The ‘continuum’ iscomposed of prevention, treatment, careand support – four indivisible pillars of aneffective response to HIV and AIDS.Civil society Civil society is composed of diverse actorsand institutions such as charities, nongovernmentalorganisations, communitybasedorganisations and groups, women'sorganisations, faith-based organisations,professional associations, self-help groups,networks of people living with HIV andAIDS, social movements, coalitions,advocacy groups etc.International A body of treaties, charters, covenants,human rights bills of rights, declarations and otherinstruments international legal instruments thatgovernments have agreed or signed.Rights Individuals and groups with rights asholders defined in International HumanRights Instruments.Duty bearers State or non-state actors responsible andaccountable for ensuring rights, as definedin International Human Rights Instruments,are respected, protected and fulfilled.Empowerment The process through which women andgirls come to see themselves as havingentitlements and rights and identify thepower they and others have to claimthose entitlements.Women’s The capacity of women to act individuallyagency or within a group, to start an empowermentprocess and to then regain control andmake choices in their life.SexGenderSexualityGenderequalityPMTCT-PlusThe characteristics of human biology andanatomy that define males and females;sexual intercourse.Socially constructed characteristics,qualities and behaviours, assigned tohuman beings according to their sex,against which women and menare measured.Encompasses sex, gender identities androles, sexual orientation, eroticism,pleasure, intimacy and reproduction.Includes thoughts, fantasies, desires,beliefs, attitudes, values, behaviours,practices, roles and relationships.Sexuality is influenced by the interaction ofbiological, psychological, social,economic, political, cultural, ethical, legal,historical, religious and spiritual factors. 1The right of both sexes to equal rightsand opportunities, and to be free fromdiscrimination established throughgender norms.Unlike simple prevention of mother-tochildtransmission programmes (PMTCT)that put the burden of prevention oftransmission to the newborn exclusivelyon women, PMTCT-Plus involves everyfamily member infected or affected by HIVand AIDS. It is a more holistic set ofservices for pregnant women living withHIV and AIDS, providing preventativetherapy, treatment and care for women intheir own right (including treatmentoptions beyond pregnancy). PMTCT-Plusencourages the participation of men at allstages of pregnancy, delivery and care aswell as on issues around stigma andpositive status disclosure.Walking the talk putting women's rights at the heart of the HIV and AIDS response 3

PositivelivingA term used to describe a way of living afull and healthy life with HIV and AIDSincluding mental, physical and emotionalhealth. Positive living can include goodnutrition, accessing treatment including foropportunistic infections, and withpsychosocial, spiritual, emotional andcommunity support.Primary care Family members or close friends whoprovider provide care and support in the home.Secondary Visiting nurses, health workers orcare provider community care providers from NGOSor community groups. They provide arange of services for people living withHIV and AIDS.SerodiscordantVerticaltransmissionA term used to describe a couple in whichone partner is living with HIV and AIDSand the other is not.Vertical transmission, also known asmother-to-child transmission refers totransmission of an infection, such as HIV,hepatitis B, or hepatitis C, from mother tochild during the perinatal period, theperiod immediately before and after birth.4 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Gideon Mendel/Corbis/ActionAidAderonke Afolabi, founder of the support organisation PotterCares in Nigeria, is one of the few people in the country livingopenly with HIV and AIDS.Executive summaryIt is time to walk the talk on women, human rights and universal access toHIV and AIDS services. We call on decision-makers to take urgent andpractical action to ensure that women and girls’ rights are recognised as anessential foundation for achieving universal access to prevention, treatment,care and support.Walking the talk putting women's rights at the heart of the HIV and AIDS response 5

Rights violations drive the pandemicUsing research from 13 countries, this reportdemonstrates that gender inequalities and thepersistent and systematic violation of their rights areleaving women and girls disproportionately vulnerable toHIV and AIDS. Poverty and limited access to educationand information, discriminatory laws and ingrainedgender inequalities all deny women and girls their rights.Gender-based violence, health systems that serve theneeds of women poorly and limited participation indecision-making processes all fuel the feminisation ofthe HIV and AIDS epidemic.Globally the percentage of women and girls living withHIV and AIDS has risen from 41% in 1997, to just below50% today, while in sub-Saharan Africa, 75% of 15 to24-year-olds living with HIV and AIDS are female. Thisreport shows that it is poor, rural women who are amongthose hit hardest by the profound health, economic andsocial impacts of the HIV and AIDS epidemic.We have known for some time that while women andgirls are disproportionately affected by HIV and AIDS,they still provide the backbone of community supportand play critical roles as agents of change, activists andleaders. However, responses to HIV and AIDS still donot reflect these realities.Universal access and women’s rights: theframework for actionThere are only two years left to meet the commitmentby governments and donors to ‘universal access toprevention, treatment, care and support by 2010’ forthose affected by HIV and AIDS. The only effective wayto realise this commitment is to promote a women’srights-based and gender-sensitive approach.Our call to actionOur report lays responsibility for making these changes firmly with thosewho hold power and bear the duty to respect, protect, promote and fulfilrights – national governments, donors and multilateral organisations and, tosome extent, civil society. Our report balances this with the essentialpromotion of women and girls as rights holders, activists and leadersof change.6 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Prevention, treatment and care and supportIn every aspect of prevention, treatment and care and support, women and girls are regularly unable toexercise their rights to access HIV and AIDS services. In this report we detail the barriers for women andgirls in terms of prevention, treatment and care and support, and suggest recommendations. We summarisethese recommendations below.Prevention“…my husband tested positive before me,but my aunties, together with my latehusband, disapproved of condom use,arguing that he had paid up all the bridewealth and therefore [I] was supposed notto deny him sex, unprotected or not… theyaccused condom use with lack of love formy late husband… everyone was againstme and [I] had no option…”Strategies to prevent HIV infection often fail to take intoaccount the real lives of women and girls. Preventionstrategies based on abstinence, being faithful and usinga condom ignore the lack of control most women haveover their sexuality and the violence women face,particularly within marriage. The development ofprevention methods that women can control (femalecondoms and microbicides) will help, as will educationand public awareness campaigns that promotewomen’s rights.National and donor governments must only fundevidence-based, gender-sensitive preventionprogrammes that take a rights-based approach,including contributing their fair share to thedevelopment of microbicides and increasing access tothe female condom and other female-initiated HIVpreventionmethods.TreatmentZimbabwean woman living with HIV and AIDS“How can I get up at 3am then travel aloneduring the night to make sure I getantiretrovirals? But a man can easily walkduring the night.”Women are more likely to receive treatment than men, butour research suggests they may be less likely to adhere toit. Reasons given are the lack of privacy and the fear ofviolence or abandonment if their positive status isdiscovered. Women also have less access to adequatenutrition, which they need to support their treatment. Ifaccess to treatment is to be increased, the particularbarriers for women will also have to be addressed.National governments must develop, fund andimplement their national treatment plans and budgetswith a strong emphasis on the access and adherenceof women and girls to treatment, particularly those inpoor and rural communities.Care and support“We walk for miles and miles in order toreach clients in other homesteads. Oncewe are there clients expect a lot from us,like food and even money. This putspressure on our personal resources.”Namibian care providerWomen living with HIV and AIDS face significantbarriers in getting the care and support they need.Leadership of support groups is often dominated bymen, with women and girls unable to raise theirconcerns. The problem is particularly difficult forwomen living in poverty, who don’t have access to theincome generation opportunities or state services theyneed to provide for themselves or their families.Furthermore, women and girls are the major careproviders, yet they are seldom paid and the value ofthis work is rarely recognised.Rwandan woman living with HIV and AIDSWalking the talk putting women's rights at the heart of the HIV and AIDS response 7

Cross-cutting recommendations• National and donor governments should basenational AIDS plans on a rights-based analysis of thebarriers faced by women and girls in regard to HIVand AIDS prevention, treatment, care and supportservices. UNAIDS and the World Health Organizationmust develop clear targets, guidelines and a singlestrategy to support country governments to do this.• National and donor governments should consultwith women’s movements, local networks andmovements of women living with HIV and AIDS toensure funding reflects local priorities. They shouldalso ensure that their policies and programmes donot reinforce inequalities and have the participation ofwomen and girls living with (and affected by) HIV andAIDS at their heart.• National and donor governments should ensurelong-term, predictable funding for the strengthening ofhealth systems, in particular to ensure women-friendlyand pro-poor health systems that integrate HIV andAIDS and sexual and reproductive health rightsservices with HIV and AIDS prevention, treatment, careand support services. This should include adequatestaffing, diagnostics, medicines and other provisions totreat opportunistic infections that particularly affectwomen and girls, such as cervical cancer.• The Global Fund to Fight AIDS, Tuberculosis andMalaria should improve expertise on women’s rightsat all levels of the decision-making process, anddevelop adequate indicators to monitor that countrycoordinating mechanisms are reflecting the prioritiesand rights of women and girls.• Civil society should undertake advocacy and raiseawareness around women’s rights to HIV and AIDSprevention, treatment, care and support, as well ashold governments to account for the realisation ofthese rights. They should also increase meaningfulinvolvement of women in leadership and decisionmakingpositions in their organisations to ensureissues related to women and girls’ rights areprioritised in their workWorldwide commitment to the universal access goal– and the universal access process itself – providesan opportunity to strengthen advocacy for women’srights. Moving from recognition of the feminisationof HIV and AIDS to action is a major challenge. Todate, this challenge has been met by devastatinginaction. The solution requires both politicalcommitment and resources. Those with power mustlisten to women’s priorities, uphold their right toparticipation, support their empowerment andchallenge those who violate their rights.“When my husband was ill I went with my husband for medication, but when I’m ill I talk tothe NGO staff.”Woman living with HIV and AIDS, Pakistan8 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Gideon Mendel/Corbis/ActionAidStreet vendors trained as HIV and AIDS educators perform aneducational song in Bobole in Mozambique. They aim theirmessage at truck drivers who buy their produce.1. IntroductionMost governments have committed to ensuring therights of women and girls through the legal frameworks“The HIV/AIDS epidemic has put thespotlight on deep-rooted constraints thathold women back in many areas of life.Traditional attitudes and behaviourschange gradually, sometimes over severalgenerations. This epidemic gives us nosuch luxury of time.” 2Dr Margaret ChanDirector-General of the World Health Organizationof international human rights. However, growingfeminisation of the HIV and AIDS pandemic is damningproof of the failure by governments to deliver on theircommitments. Gender inequality, violence againstwomen and other violations of women’s rights arecritical drivers of the HIV and AIDS pandemic. Studieshave affirmed gender norms to be among the strongestunderlying social factors influencing sexual behaviourand HIV risk. Similarly, women and girls living with HIVand AIDS may experience particular stigma,discrimination and increased violence if their HIV statusis disclosed. Despite the overwhelming evidence of theimportance of discrimination against women, it has notbecome an integral aspect of the global AIDS response.By failing to acknowledge and respond to genderedaspects of the pandemic, not only are governmentsfalling short on their commitments, their efforts to stemthe spread of HIV and AIDS are destined to fail.This report argues that only a rights-based approachcan redress the current failures and support women inthe response to HIV and AIDS. While firmly anchored inthe treaties, declarations and commitments that makeWalking the talk putting women's rights at the heart of the HIV and AIDS response 9

up international law, a rights-based approach placespeople squarely at the centre of the agenda. Itempowers women and girls to claim their rights, andtake control of their bodies and lives. It puts women andgirls at the heart of policies and programmes, ensuringtheir meaningful participation by making governmentsand institutions accountable to them. It also placesresponsibilities on men and boys for respecting andpromoting women’s rights. It is our hope that this reportwill contribute to international advocacy efforts that gobeyond mere rhetoric and make a tangible difference inthe lives of the people we serve.1.1. Structure of the report“We will not be able to stop this epidemicif we don’t address its drivers in the firstplace – gender inequality and itsconsequences for women. This willrequire that we go well beyond thegender rhetoric and be more operationalin what we promote.” 3Dr Peter PiotUNAIDS Executive DirectorThis report explores obstacles to universal access toprevention, treatment, care and support for all womenand girls. It illustrates the ongoing violations of women’srights by the actions and inactions of those settingpolicies, providing funding, offering services andimplementing programmes. It further provides workingsolutions and best practices for overcoming thoseobstacles. Such strategies were gathered throughresearch studies conducted in 13 countries in whichActionAid and VSO work. While not an exhaustive reviewof women’s rights, it incorporates the voices of ourconstituents to bring to life the particular challenges forwomen living in the era of HIV and AIDS. By weavingsuch everyday stories throughout the text, we hope toillustrate that rights are not just abstract principles, butrather tangible tools that fundamentally affect thewellbeing of women and girls around the world.The report presents an overview of the ways in whichwomen’s rights affect every aspect of HIV and AIDSprevention, treatment, care and support. We begin inChapter 2 with an overview of cross-cutting women’srights issues relevant to HIV and AIDS. Chapters 3 to 5then examine the many barriers women face in accessingHIV and AIDS prevention (Chapter 3), treatment (Chapter4), care and support, as well as the challenges faced bywomen care providers (Chapter 5). Finally, the reportconcludes by calling upon governments in rich and poorcountries, as well as donors, multilateral organisations andcivil society, to take specific steps to place women’s rightsat the heart of their response to HIV and AIDS.Throughout the report we have includedrecommendations for incorporating the rights of womenand girls in the scale up to universal access.Lastly, we use the term ’women and girls’ throughoutthe report, while acknowledging that this does notrepresent a homogeneous category. However, werecognise that some women and girls are particularlyvulnerable or marginalised, whether as a result ofincome, ethnicity, class, caste, religion, sexualorientation, age, disability, profession or other factors.There are specific challenges to realising the rights ofeach of these groups, made more complex andpressing by the many ways in which they aremarginalised. While this report does not cover everykind of marginalisation, stories integrated into the reporthighlight some of the challenges faced by specificgroups in the developing world, where ActionAid andVSO’s work is focused.1.2. MethodologyThis report is a joint project between ActionAid andVSO, conducted between May and November 2007. Itdraws together desk-based research at internationallevel and short participatory research projectscommissioned from Bangladesh, Ethiopia, Guatemala,India, Mozambique, Namibia, Nepal, Nigeria, Pakistan,Rwanda, South Africa, Vanuatu and Zimbabwe.ActionAid and VSO programme staff and nationalpartner organisations conducted the country levelparticipatory research over a two-month period. Theyused a range of research methods including: focusgroups of women living with HIV and AIDS, as well asspecific vulnerable groups such as sex workers, inaddition to focus groups of community care providers inboth urban and rural settings; semi-structured andin-depth interviews with key policy makers ingovernment, international non-governmentalorganisations (INGOs) and national coordinatinginstitutions; and desk-based surveys of nationalresearch and policy to assess the legal and socialcontext affecting women in those countries. Quantitativedata was gathered through desk-based research. Theinformation and stories gathered from focus groupparticipants have both guided the content of the reportas well as provided its most personal testimony.10 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Figure 1: Number of women and men living with HIV and AIDS in sub-Saharan Africa 1985-200416Number of women and men living withHIV and AIDS – Millions14121086420Women living with HIV and AIDSMen living with HIV and AIDS1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004Year(Source: UNAIDS/WHO estimates 2004)1.3. Overview: the feminisation of HIV and AIDSThe ‘feminisation of HIV and AIDS’ is an often quotedrecognition by governments and internationalorganisations that women and girls are increasinglyinfected by HIV and AIDS, and carry many of theburdens related to the pandemic. Globally, thepercentage of people living with HIV and AIDS who arewomen and girls has risen sharply from 41% in 1997 4 tojust below 50% today. 5The vulnerability of women and girls to HIV and AIDS isparticularly marked in sub-Saharan Africa. As the abovegraph shows, the difference in the number of womenliving with HIV and AIDS in sub-Saharan Africa nowsignificantly outstrips the number of men. Women andgirls in this region now represent nearly 60% of all thoseliving with HIV and AIDS, 6 and as much as 75% amongst15 to 24 year olds. In other regions, an increasingproportion of people living with HIV and AIDS are womenand girls. 7 The reasons for the feminisation of HIV andAIDS are complex. As we discuss more extensively inChapter 2, women and girls’ rights violations leave themmore vulnerable to HIV and AIDS and with limited accessto HIV prevention, treatment, care and support services.Understanding the role of women and girls’ rights inrespect to achieving universal access to prevention,treatment, care and support is therefore crucial.1.4. Universal access: what is it and why are weusing it as a framework?Providing universal access to prevention, treatment,care and support is the most recent and comprehensivecommitment made in response to HIV and AIDS by theinternational community. These four pillars are nowrecognised as the indivisible elements of an effectiveHIV and AIDS response. First proclaimed by the G8countries in 2005 at the Gleneagles Summit, andreiterated by other UN member nations in 2006 at theUN High-Level Meeting on AIDS, universal access setsthe framework for both the UN system and, byextension, country-level response. As part of theircommitment, countries promised to set national leveltargets to work towards the goal of “universal access tocomprehensive prevention programs, treatment, careand support by 2010”. 8There are two important limitations to using universalaccess as a framework for scaling up women and girls’access to prevention, treatment, care and support. Thefirst refers to the actual definition of ‘universal’. While weat ActionAid and VSO define ‘universal’ as access foreveryone, UNAIDS has set specific targets forprevention, treatment, care and support. For example,the 2010 target for the ‘treatment’ goal has been set at80% coverage of those who would die within one yearwithout such treatment. 9 It is important that thesetargets are seen as a milestone towards reaching theultimate goal of genuinely accessible serviceseverywhere, for everyone.The second limitation refers to the importance of (orlack of) gender as a factor in the universal accessprocess. Governments ratcheted-up the significance ofgender during the 2007 G8 summit, the first G8meeting both to acknowledge the importance ofwomen’s rights in addressing the pandemic as well asto expressly make the link between HIV and AIDS andsexual and reproductive health. 10 And yet the lack of anexplicit mandate to include gender issues on country-Walking the talk putting women's rights at the heart of the HIV and AIDS response 11

Gideon Mendel/Corbis/ActionAidA woman comforts her sister who has malaria, in the femalegeneral medical ward of Kamazu Central hospital, the secondlargest in Malawi.2. Gender inequality,women’s rights and HIVand AIDS“Violence against women is a fact of life inIndia. A woman has the duty of pleasingher husband; if she refuses sex, she risksviolence, abuse and abandonment. Thesewomen tolerate their husband’s infidelityand abuse and submit to their demandsto avoid further abuse, remaining in theserelationships for fear of abandonment.The culture of silence is maintained andmany view this violent relationship as‘normal’.” 15 Walking the talk research, India, 2007Gender bias undermines the universal access effort atevery step – from prevention to treatment, to care andsupport. This chapter explores some of the rights ofwomen and girls that cut across the universal accesscontinuum. We have grouped the rights under broadercategories of sexual and reproductive rights, right to thehighest attainable standard of health, and economic rights.As HIV and AIDS is not just a health issue, but an issue ofsocial, cultural and economic inequalities, we focus on theinterplay of abuses of these rights in hindering the universalaccess process for women and girls.2.1. Sexual and reproductive rights and violenceagainst womenAll people have the right to control what happens totheir bodies and to make personal decisions regardingwhen, how, and with whom they have sex. ‘Sexualrights’ refers to sexuality and human rights associatedwith physical and mental integrity, including the right toa safe sex life, the right to choose an intimate or lifepartner, and the right to sexual health information andservices. Yet the prevalence of violence against womenmeans that countless women around the world aredenied that basic right. Whether forced into sex throughexpressly violent means, or coerced through early14 Walking the talk putting women's rights at the heart of the HIV and AIDS response

marriage, harassment or other societal pressure,women are often at great risk of contracting HIV.Indeed, there is widespread recognition that HIV andAIDS cannot be addressed effectively withoutspecifically addressing violence against women,particularly sexual violence. 16 The two issues areinextricably linked. HIV and AIDS are recognised as botha cause of violence (eg following a positive test) and aconsequence of it (eg through rape or domesticviolence). Domestic violence, rape and harmfultraditional practices such as female genital mutilation(FGM) all increase women’s risk of infection. Youngwomen and girls are at particular risk of infection sincethey are more biologically vulnerable and may have lesscontrol over their sexuality.Gender-based violence strips women of their physicalautonomy and is explicitly or implicitly used by men as ameans of control, enforcing many of the genderinequalities that we shall explore in this chapter. Recentresearch by the World Health Organization shows thatsexual violence, particularly by an intimate partner, is aleading factor in the increasing ‘feminisation’ of theglobal AIDS pandemic. 17 However, recent research bythe Women won’t wait campaign has confirmed thatthis recognition is not yet reflected consistently (or,sometimes, at all) in the policies, programming andfunding priorities of governments and donors at thenational, regional and international level. 18The right to enter into marriage freely and to equality inmarriage also affects women’s – and in particular younggirls’ – likelihood of contracting HIV, as well as theirability to seek treatment, care and support. Worldwidetrends show that married women may in fact be atgreater risk than unmarried women for contracting thedisease. In Bangladesh, for example, one focus groupwith women belonging to the self-help group MUKHTOAKASH, stressed that the majority of women living withHIV and AIDS are married women infected by theirhusbands, who are often migrant workers, or inmonogamous relationships. 19 Indeed, the executivedirector of the Confidential Approach to AIDSPrevention (CAAP), argued that in Bangladesh it iswidely considered a “man’s innate right to indulge inunsafe sex with their wives. These women are infectedby their husbands and then are blamed by society forinfecting their husbands.” 20 In Rwanda, members of afocus group reported how their husbands had beatenthem because they once refused to have sex if nocondom was used. 21 Sexual rights are often abridged inthe case of an ‘early’ or child marriage, especially wherea dowry has been paid. Dowries are often considered‘an outright purchase of a wife’. 22 As a result, wiveswho do not ‘measure up’ may be denied information orcontrol over their lives and in some cases are victimsof violence. 23Reproductive health and rights are also critical forstemming the spread of HIV and AIDS. A majority of HIVinfections worldwide are sexually transmitted or areassociated with pregnancy, childbirth or breastfeeding.Women who become pregnant after sex with aninfected partner face particular challenges. Thesewomen are more likely to be aware of their HIV status,because of the prevalence of pre-natal testing.However, women living with HIV and AIDS may beadvised against continuing their pregnancy. In cultureswhere women’s value is strongly linked to their maternalabilities and where childbearing brings social status andeconomic support, stigmas arise around a woman’s realor perceived infertility. (See Chapter 3 for morediscussion on sexual and reproductive health and rightsin relation to HIV prevention).Choices around childbearing may be most acute foryoung, married women living with HIV and AIDS. On theone hand, women who choose not to have children orto stop childbearing before having the socially expectednumber of children, may be stigmatised for breakingsocial and gender norms. On the other hand,communities frown upon women living with HIV andAIDS having children, and tend to blame them forinfecting their children. “In India, motherhood isperceived as the ultimate validation of womanhood.With the increasing risk of married, monogamouswomen contracting HIV… women [are commonly]stigmatised and blamed for passing the infection to herunborn child. Blame is accentuated if a male babybecomes infected, due to the high value alreadyawarded male children.” 24HIV-positive mothers also may need to take precautionsto prevent mother-to-child transmission, such as usingbreast milk substitutes. However, in cultures wherebreastfeeding is commonplace, women who don’tbreastfeed may be condemned by relatives or othermembers of the community. Failure to breastfeed is oftenseen as tantamount to an admission of HIV-positivestatus. Even women aware of the risks of breastfeedingmay continue the practice because of the fear of beingstigmatised or because of economic dependence onhusbands who can’t or won’t give them money forformula. Stuck between contradictory culturalexpectations, these young women can be said to face‘multiple, simultaneous stigma’ 25 (see Chapter 3 for moreon prevention of mother-to-child transmission plus).Walking the talk putting women's rights at the heart of the HIV and AIDS response 15

2.2. Right to the highest attainable standardof health“When my husband was ill I went with myhusband for medication, but when I’m illI talk to the NGO staff.” 26Woman respondent, Walking the talk research,Pakistan, 2007Many women and girls living with HIV and AIDS,especially those who live in poor, rural communities, findit difficult to take care of their health. In some casesthey face discrimination from health professionals thatfurther violates their rights. As one woman in Nepalreported, “When I visited Teku Hospital for getting myquota of ARV for that month, there was a new nursethere. When I asked her for ARV, she looked at me fromtop to bottom and made a comment ‘you look sopretty, you must have been involved in some immoralbehaviour, that’s why you got this virus’.” 27 Suchdiscrimination and stigma, coupled with inadequatetraining around HIV and AIDS, has resulted in somewomen receiving poor treatment or inaccurateinformation from health professionals in comparison tothat given to men:“A man gets priority treatment with politenessfrom the nurses while a woman in pain screamsin the background. A woman is also most of thetime shouted at and dismissed easily when theyare late for medication. If the medication is notavailable they are told to go home, notconsidering the distance that they have travelledto get there.” 28The International Community of Women Living with HIVand AIDS (ICW) has highlighted many incidents ofwomen living with HIV and AIDS who have beenadvised to have terminations or sterilisations, have beengiven misinformation about child-bearing options,prevention of parent-to-child transmission andbreastfeeding, or encountered fear or judgement fromhealthcare workers. 29 In research for this report inChina, for example, one focus group participantreported that she had been forced by healthcareprofessionals to have a termination of her pregnancybecause she was living with HIV and AIDS. 30 Researchin Namibia has found that healthcare workers do notmake medical information accessible to their clients,thus denying their right to information. Women inNamibia reported that they often do not understandwhat healthcare workers are telling them about theirhealth or treatment. 31As a result, many women and girls are reluctant toaccess or return to healthcare facilities. All participantsin one focus group in India, for example, agreed thatwomen and girls find it difficult to visit clinics comparedto men, mainly because of stigma and discrimination,and the fear of being branded as sex workers. 32Furthermore, many cases exist of health professionalsviolating women’s right to privacy by notifying others oftheir HIV status. For example, one woman interviewedby ICW reported the following:“I got pregnant and was happy about that. But,after the delivery, I got ill. They did a test withoutmy knowledge. And then the staff didn’t treat meso well. And then, instead of telling me the result,they announced it to my husband! No one saidanything about it to me. I had no idea what wasgoing on. People began to treat me strangely, butI didn’t know why. It was only four months laterthat my husband told me I was HIV-positive.” 33According to the Positive Women’s Network (PWN+) inIndia, some health systems also fail to provide adequatetreatment for opportunistic infections commonlyaffecting women living with HIV and AIDS. PWN+ foundthat a lack of trained medical staff specialising in theseareas has resulted in a dire shortage of medicaldiagnostics, treatment and care for many opportunisticinfections experienced by women. 34 Similarly, despitegrowing evidence that HIV and AIDS predisposeswomen to cervical cancer regardless of age, ICW foundthat many health professionals in South Africa andSwaziland refused to screen women living with HIV andAIDS for cervical cancer, 35 thus violating their sexual andreproductive rights. As one woman in Sibasa, SouthAfrica reported, “I tested HIV-positive in 2003. To date Ihave not been asked about a pap smear or anything likethat at my clinic.” 36There are also more practical concerns that womenhave. In Bangladesh, for example, one focus groupexpressed concerns that, at one state-owned hospital,women were placed in mixed-sex general wardsregardless of their ailment, while men with certainailments were placed in men only wards. 37 One focusgroup in India also expressed a wish for health servicesto provide a separate section for women in clinics andhospitals as well as a good attitude to patients, femaledoctors, provision of house visits and provision ofchildcare facilities. 38The burden of unrecognised domestic and informalwork, including caring for others (see Chapter 5) meansthat many women are simply not able to find time torealise their own right to health. The need to make16 Walking the talk putting women's rights at the heart of the HIV and AIDS response

childcare arrangements or to take time off work mayprevent many women from accessing health clinics,particularly those who work in the informal sector wheresick leave and other employment rights may not exist.Finally, because of costs such as transport to healthfacilities or user fees for accessing medical services,formal medical care may simply not be an option formany women and girls, even for those with a regularincome. Richard Bauer, Chief Executive of CatholicAIDS Action in Namibia, highlighted this tension:“People need to make a decision on either buyingfood for their family or spending money ontransport to access a medical facility. Mostpeople decide to go for the short-term solutionand provide food to their family.” 39Restrictions on freedom of movement further mean thatsome women are not allowed to go to the doctor aloneor without permission from a male relative. In Malawi,Nigeria, Mali and Burkina Faso, 70% of womensurveyed said their husbands made the decisionsregarding their healthcare. 40 In rural areas of Limpopoprovince in South Africa, some women we spoke toregard men as the head of the family and every familymember is expected to follow his words. Women toldresearchers that they find it difficult to seek helpbecause this action alone might lead their husbandsand their husbands’ families to suspect she is doingsomething against her husband’s will. Even leaving thehouse of their own accord may place a woman’smotives under suspicion. In such a situation, it is hardfor women to realise their health rights by going to aclinic or to seek support for fear of being diagnosed assick and being blamed for her illness. 41The stress and impact of restricted mobility, of thefinancial cost of healthcare, and of the time spenttravelling to healthcare facilities is well articulated by onewoman from Nepal, who feared seeking the permissionof her parents-in-law to travel to a treatment centre:“This time I said I am going for some check upbut in future when I need to travel repeatedly, Idon’t know what I should say to seek theirpermission. Kathmandu is very far from my homeand I can’t bear the repeated travelling cost.” 42Indeed, costs and financial considerations are asignificant impediment to universal access, as weexplore in the next section.2.3. Poverty and economic rights“If you want me to have sex with a condom,I won’t give you any money for food.” 43Partner of member of Women against Women Abuse,South AfricaPoverty is a major driver of HIV and AIDS. It is alsoinextricably tied to women’s rights, as women make upa majority of the world’s poor population. Globally,women are more likely than men to work in the informalsector with low earnings, little financial security and fewor no social benefits such as free or subsidised antiretroviraltreatment, or food supplements. Furthermore,a woman’s earned income is on average approximatelyhalf that of a man’s in sub-Saharan Africa, falling to 40%in Latin America and South Asia, and 30% in the MiddleEast and North Africa. 44Feminised poverty is also linked to women’s lack ofability to administer and own property. Some womenand girls also have limited control over householdincome and assets, despite their right to own andadminister property. In sub-Saharan Africa, for example,title deeds to land are normally issued to male heads ofhousehold. 45 In Kenya, women hold only 1% ofregistered land titles and around 5-6% of registered titlesare held jointly with others. 46 Even upon inheritance,many women and girls face eviction from family propertybecause of disputes with members of their husband’s orfather’s extended family. 47 Such property grabbing iscommon as women and girls are thrown off their land byhusbands/partners and their relatives.Furthermore, legislation, where adopted, may not givewomen equal protection under the law. The Indian HinduSuccession Act 1956, for example, recognised the rightof women to inherit the property of their father. However,this Act does not apply to women belonging to non-Hindu religious communities and is rarely implementedeven in the case of Hindu women. 48 Without propertyand inheritance rights, women and girls living with HIVand AIDS, widowed or abandoned by their husbands orfamilies, may be left penniless and destitute.Poverty and the resulting economic dependency ofmany women and girls often means that they are forcedto rely on, and stay with, their male partners, even inviolent or abusive relationships. Furthermore, it givesthem little power to negotiate safe sex, even when theyknow that their partners are HIV-positive or havemultiple sexual relations. In Zimbabwe, for example,“although women knew their sexual rights, they fearWalking the talk putting women's rights at the heart of the HIV and AIDS response 17

imprisonment of their husbands and the consequentloss of income if they reported sexual violence by theirpartners.” 49 Early marriage and relationships with ‘sugardaddies’ often represent a form of economic exchangewhich leave women and girls with little power. Insituations of extreme poverty, sex serves as a survivalstrategy, where women balance immediate needs offood or shelter with the more distant and abstractprospect of contracting a disease.This same economic dependency forces many womenand girls to disclose their HIV status and ask their malepartners or guardians for money for medication ortransport. 50 According to the Zimbabwe study, “somewomen living with HIV and AIDS had been deserted bytheir husbands,” and “many were facing problems inraising funds for AIDS treatment, including CD4 cellcounting services”. Even when her partner stands byher, such dependency can leave women morevulnerable to interruptions in their treatment. In Uganda,for example, “if the husband dies, most of the widowsare dependent and their lives change so abruptly”. 51In fact, socio-economic barriers are a major reasonwomen are unable to access treatment, care andsupport. In many countries, prohibitively high hospitalfees combined with other expenses are a major barrierto access. According to research in Nepal undertakenfor this report, “The major obstacles faced by thesewomen… are associated with regular cost toKathmandu, and to clinics for CD4 count and ARTcoupled with the time lost due to long travel time andfew days stay in Kathmandu and thus time lost fromregular income generation work and childcare.” 52The burden of HIV and AIDS care places a heavy tollon women and girls, affecting their financialproductivity, among other things. Up to 90% of care isprovided in the home, and the principal givers ofphysical and psychosocial support are women andgirls. 53 In one region in Ethiopia, for example, about85% of care providers (the majority of whom arewomen) spend their time providing care and supportto home-based patients and have no other sources ofincome to support their families. 54 It is often taken forgranted that such women will continue to provideunremunerated care and support to infected andaffected family and community members. Lesserknown is the cost of this care, how it affectseconomic, societal and familial relations, and – last butnot least – the women and girls themselves (seeChapter 5).2.4. Recommendations Donor governments1) Donor governments should consult with women’smovements, local networks and movements ofwomen living with HIV and AIDS to ensure donorfunding reflects local priorities of the people livingwith and affected by HIV and AIDS. They shouldalso ensure that their policies and programmes donot reinforce inequalities.2) Donor governments should fund civil society andlegal aid organisations to support women living withHIV and AIDS to establish test cases, research,monitor and report women’s rights violations, andto lobby and advocate for reform of laws andpolicies that discriminate against women.3) Donor governments should ensure long-term,predictable funding for the strengthening of healthsystems, in particular to ensure women-friendlyhealth systems that integrate HIV and sexual andreproductive health rights (SRHR) services.18 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Multilateral organisations1) The Joint United Nations Programme on HIV/AIDS(UNAIDS) and the World Health Organizationshould develop clear guidelines and a strategy tosupport country governments to develop a humanrights-based analysis of the barriers faced bywomen and girls for scaling up HIV and AIDSaction. This can be done in conjunction with localHuman Rights Commissions.2) The Global Fund to Fight AIDS, Tuberculosis andMalaria should improve expertise on women’srights at all levels of the decision-making processand develop adequate indicators to ensure thatcountry coordinating mechanisms are reflecting thepriorities and rights of women and girls.3) The second independent evaluation of UNAIDSmust analyse the degree to which women's rightsin relation to HIV and AIDS are addressed byUNAIDS and its co-sponsors. It must make clearrecommendations around women's rights toimprove UNAIDS’ effectiveness.Developing country governments1) National governments should base national HIVand AIDS strategies on a human rights-basedanalysis of the barriers faced by women and girls inregard to HIV prevention, treatment, care andsupport services. This should have the participationof women and girls, living with and affected by HIVand AIDS, at its heart.2) National governments should tackle stigma anddiscrimination head on by establishing andenforcing anti-discrimination laws, investing innational stigma reduction campaigns and byproviding training for doctors and healthcareworkers on the rights of women and girls living withHIV and AIDS. Governments, donors and civilsociety should also be careful about how publicinformation campaigns transmit messages in orderto avoid stigmatising messages.3) National governments should provide training andfunding and put systems in place to ensure thatadequate staffing, diagnostics, medicines and otherprovisions are made to treat opportunisticinfections that particularly affect women and girls,such as cervical cancer. Governments must investin training female healthcare workers and othermedical professionals.Civil society organisations1) Civil society should prioritise capacity building inwomen’s rights-based programming in their HIVand AIDS responses.2) Civil society organisations in developed anddeveloping countries should prioritise women’srights advocacy and campaigns at all levels.3) Civil society should ensure that a human rightsapproach to the barriers faced by women and girlsis at the heart of their programmatic interventions.Walking the talk putting women's rights at the heart of the HIV and AIDS response 19

Gideon Mendel/Corbis/ActionAidYoung people march in a street protest against analleged child abuser in the poor Lagos neighbourhoodof Ajeromi, Nigeria.3. Women’s rights anduniversal access toHIV preventionThe political declaration on HIV/AIDS adopted by theUN General Assembly in 2006 reaffirmed the centralityof women’s rights in HIV prevention. 55 Governmentspledged “to eliminate gender inequalities, gender-basedabuse and violence; increase the capacity of womenand adolescent girls to protect themselves from the riskof HIV infection.” 56Such ambitious goals necessitate multi-prongedstrategies. Whereas critical areas of HIV prevention havealready been explored in Chapter 2, including issuesaround sexual and reproductive rights and violenceagainst women, this chapter examines a variety ofcomplementary strategies to empower women (and men)to protect themselves against contracting HIV. Thesestrategies can be roughly divided into the categories of‘information’, including formal and informal education andawareness-raising to promote behaviour change;‘technologies’ and medical interventions, includingcondoms, microbicides, circumcision, and post-exposureprophylaxis; and services such as voluntary counselling20 Walking the talk putting women's rights at the heart of the HIV and AIDS response

and testing. A few of the strategies, such as prevention ofmother-to-child transmission plus, can be consideredcross-cutting, as they involve elements of all of thesestrategies. No strategy will succeed if tackling genderinequality and women’s lack of power to use HIVprevention is not at its heart.3.1. Women’s right to education and informationSexuality education in schoolsIn the absence of a cure for HIV and AIDS, educationhas been called a ‘social vaccine’ for preventing HIV.Research in a variety of settings asserts that educatedgirls are more likely to know the basic facts about HIVand AIDS, more empowered to negotiate safe sex, maybe more likely to delay sexual activity, and are less likelyto suffer from sexual and gender-based violence. 57Women with at least a primary education are threetimes more likely than uneducated women to know thatHIV can be transmitted from mother to child. 58Schools play a crucial role in providing vital informationon HIV prevention. They are often the only method fordelivering information on HIV prevention, especially inremote places, or where access to family planninginformation only exists for married couples, such as inVanuatu. Recent statistics make it clear that youngpeople need better access to accurate information onsafer sex. According to UNAIDS, “though theDeclaration of Commitment on HIV/AIDS aimed for 90%of young people to be knowledgeable about HIV by2005, surveys indicate that fewer than 50% of youngpeople achieved comprehensive knowledge levels.” 59 InZimbabwe, adolescents associated with this study“showed ignorance of sexual and reproductive rights”as well as negative perceptions about condoms whichthey associate with lack of trust among partners. 60 InVanuatu, girls openly said that they were afraid to ask touse condoms “in case they were accused of beingpromiscuous” and showed a clear lack of knowledgeand familiarity with their bodies when acknowledgingtheir anxiety to use condoms for fear that “they wouldget stuck”. 61Education also plays a second, crucial role in“empowering young women to take control of theirsexual lives.” 62 Studies have shown, for example, that“completion of secondary education was related tolower HIV risk, more condom use and fewer sexualpartners, compared to completion of primaryeducation”. 63 We also know young people are morelikely to delay sexual activity if they receive correct andunbiased information, allowing them to make informeddecisions. 64 For example, highly educated girls andwomen are better able to negotiate safer sex, having animpact on HIV rates. 65 Given the predominance ofpressure to enter into high-risk sex, this is especiallyimportant. In research completed in Nigeria, SouthAfrica and Vanuatu, boys were generally quoted aswanting to have ‘skin to skin’ sex. 66 In South Africa, forexample, HIV prevention strategies involving life-skillsprogrammes focusing on HIV and AIDS in schools werefound to be “not appropriate for women who are poorand vulnerable to violence” because they do not “digdeep into the dynamics of gender inequality and armyoung women and men to transform the cycle ofinequality and gender-based violence in society.” 67Taught properly, sexuality education can begin tochange harmful gender stereotypes and empower boysand girls to make choices about healthy sexualbehaviours, including protecting themselves from HIV.Information given must be comprehensive and evidencebased, and lessons must go beyond presentingbiological facts to providing a space for girls and boysto discuss, challenge and analyse gender relations. Thisshould include gender equality, girls’ empowerment,mutual respect, gender-awareness education for boysand girls, and empowerment training for girls.Information should be fully integrated in school curriculain consultation with the community, local leaders andgatekeepers. An example of good practice is the newcurriculum developed last year in Nigeria forcomprehensive sex education targeting 10-18 year olds.It aims to increase their knowledge and change theirattitudes to sexual health and reduce risky behaviours.In the past such measures would have faced strongopposition on religious and cultural grounds, but thistime the curriculum was developed in consultation withreligious and community leaders, showing promisingsigns for long-term implementation. 68To enable effective sexuality education, governmentsmust invest in girls’ education to send the strong signalthat their education is just as important as that of boys.Although, worldwide, girls’ enrolment has gone up,gender inequality in accessing education remains animportant issue, 69 in particular in sub-Saharan Africa. 70The efforts must be sustained at all levels of educationsince gender inequality in accessing secondaryeducation stems from disparities in primary education. 71In Vanuatu, as in many countries surveyed, “boys in thefamily get priority if resources are limited.” Educatinggirls was seen as a “waste of resources if you just wanther to stay home,” since “educating women mightencourage them to look outside the home”. 73 Thisshows that family and marriage are still often wronglyWalking the talk putting women's rights at the heart of the HIV and AIDS response 21

perceived as safe havens for girls whose worth isstill exclusively tied to their roles as mother andcare provider.In order to maximise the educational benefit ofschooling and to promote girls’ safety andempowerment, girls must be free from violence in theschool setting. 74 Growing evidence of sexual violenceand exploitation in schools shows that girls (and lessoften boys) experience rape, assault and sexualharassment both by teachers and male students. Insome countries, it is considered an inevitable part of theschool environment. 75 Research in Ghana, Malawi andZimbabwe demonstrates the role of schools themselvesin sanctioning sexual and gender-based violence. 76According to the study, this includes male teachers andpupils propositioning girls for sex, teachers andstudents using language sexually explicit and degradingfor girls; and teachers dismissing boys’ intimidatingbehaviour as a normal part of ‘growing up’. Violenceand fear of violence are important reasons for girls notattending school. In fact, many cases go unreportedbecause of fear of stigmatisation by the family orbroader community. 77 As long as the state, officials, thepolice and prosecutors pass the responsibility to eachother, leaving perpetrators unpunished, girls’ right tobodily integrity will keep being violated. 78Women’s rights and awareness-raising: fromawareness to behaviour changeIn some rural areas, state-sponsored health oreducation services are not available. The existence ofaccessible, reliable information in these areas isespecially important because of high levels of ignoranceand misinformation about HIV and AIDS. In Nepal, forexample, “the rural female, though classified as a lowrisk population, is in fact at extreme high risk due to adeeply rooted traditional discrimination belief systemthat regards the discussion of HIV and AIDS as beingtaboo, their traditionally lower, unequal social status andlimited access to means of protection rendering themvulnerable to infection.” 80In such circumstances it is often civil society thatprovides information about how to prevent HIV andAIDS. In other rural areas where health and educationservices are available but limited, civil society plays acrucial role in disseminating information on HIVprevention. For example, one woman in the ruralprovince of Limpopo, one of the poorest regions inSouth Africa, said:“Without the NGOs, we would have very littleinformation. Indeed, many of us would just die ofignorance.” 81Efforts to raise awareness in rural areas about HIVprevention must therefore be increased through nationaland local campaigns. A rights-based approach to publicawareness-raising campaigns on HIV preventionrequires key messages to be tailored for women andgirls. As one focus group participant in Nigeria said:“Women and girls need prevention messagestailored peculiarly to the needs of women, the useof such messages on men worked for familyplanning and the same can be used to tell womenthat using [a] condom is also their right.” 82For example, information must be available in locallanguages in order to ensure that women have access tothe information they need to make informed HIVpreventionchoices. Local clinics should have up-to-datematerials displayed on the walls or available for patients totake away. Information must also be made availablethrough multiple means in order to increase itsaccessibility, for example to illiterate women and girls. Onefocus group in India suggested street theatre should beused to target unique locations frequented by women,such as markets, places of worship and primaryschools. 83 In Nigeria, women and girls cited radiocampaigns and the engagement of celebrities andBox 1. Female guardians (mlezi), TanzaniaA good practice in this area comes from Tanzania, which instituted a ‘female guardian’ programme in primaryschools. This initiative trains guardians or mlezi, one per primary school, to give advice in cases of sexual violenceor harassment and other issues related to sexual health and HIV and AIDS. The programme began as an HIVpreventioneffort when girls identified sexual coercion as a major issue affecting prevention efforts. Mlezi areteachers chosen by their colleagues and trained to give advice and advocate for girls in cases of wrongdoing. Anevaluation of the programme has shown that the establishment of mlezi has significantly increased the reportingof sexual harassment or violence in the schools. 7922 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Box 2. The Climbing to Manhood Project, Chogoria hospital, KenyaIn Kenya, the Climbing to Manhood Project of Chogoria hospital uses the practice of circumcision, a traditionalrite of passage, to address issues around young men’s sense of manhood and masculinity. During the time ofcircumcision around the age of 15, boys are expected to undergo physical, psychological and behaviouralchanges associated with manhood, and may be encouraged to begin having sexual relations. Chogoria hospitalrecognised the time around this ceremony as an opportunity to inform boys about sexual health. Incorporatingthe seclusion and bonding that occur as part of traditional circumcision rites, groups of boys participating in theproject spend a week together in a special ward following hospital circumcision. Men from the communityincluding healthcare workers, pastors and teachers explore a range of topics with them including STIs and HIVand AIDS, community expectations of men, and issues surrounding violence. 92musicians as good sources of HIV-prevention messages. 84In South Africa, women mentioned Soul City and Lovelife,TV programmes that have been targeting youth with HIVpreventioninformation. Soul City has in fact been verysuccessful in its outreach and replication in other countriesof the region, including the creation of school clubs.International donors, including DFID, fund the project andit provides a clear case of good practice. Governmentsand donors should fund additional and large-scaleprogrammes that raise awareness of HIV prevention withthe participation of women and girls. These campaignsmust go hand in hand with programmes challenginggender norms so that women and girls’ knowledge aboutHIV and AIDS is accompanied by the necessary power tonegotiate safer sex.Public campaigns must also reflect women’s rights, theneed for women’s empowerment and women’sleadership in order to be effective. The ABHAYA projectin India, for example, raises awareness amongvulnerable and excluded groups of their rights andentitlements. The project has had substantial successbasing HIV-prevention messages on women’s rights. Asone sex worker explained:“Here I learnt that if we sex workers unite, we willbe able to get our rights. We talked aboutviolence and how we can protect ourselves fromviolence, and that we have the right to askquestions. I come to ABHAYA for the monthlysupport group meetings and visit the STI clinicregularly. I have also learnt about safe sex andHIV and AIDS after coming here and have startedinsisting on using condoms ever since.” 85However, among the women interviewed for thisresearch, this experience seems to be the exceptionrather than the rule. Many women and girls remainunaware of their rights. Some members of a focusgroup of women living with HIV and AIDS inBangladesh, for example, argued that women are“usually unaware of their basic rights”. 86 For otherrespondents, women seemed to be “programmed froman early age to think of themselves as unequal and thusthey are not aware of their rights as individuals”. 87Finally, women and girls’ access to HIV preventioninformation and services often lies in the hands ofhusbands, fathers, community leaders and serviceproviders who play the role of gatekeepers. For example,women and girls are often deliberately left in the darkregarding their husband’s HIV status as well as their own.One focus group in Bangladesh reported cases of womenwhose husbands had infected them knowingly andsubsequently refused them or their children an HIV test. 88“When a male is identified as positive, it oftentakes considerable convincing and coercing forthem to get their families tested” [and thehusband] “always makes that decision.” 89To resolve this, one focus group participant in Nigeriaemphasised that:“Messages should be made in such a way thatthey give power to women to freely makechoice[s] and take decisions on usage ofprevention tools like condom[s].” 90In particular, community awareness-raising initiativesneed to be long-term, strategic and sustainable. 91 Theyneed to enable women to increase their participation,power and equality in the community and familyspheres, lead men to act responsibly and respect theirwives’ rights, and enable women and girls to sharetheir positive status publicly without violence, stigmaand discrimination.Walking the talk putting women's rights at the heart of the HIV and AIDS response 23

Abstinence, Be Faithful, Use a Condom (ABC)“A lot is being done on the preventiveaspect; however these activities are limitedto what the government considers ‘high-risk’groups. HIV/AIDS can strike anyone at anytime; it does not discriminate between age,gender or race. The preventive measuresshould be directed towards everybody, notjust those who are considered to be underthreat of infection.” 93Walking the talk research, Bangladesh, 2007ABC has become the most common HIV-preventionapproach for many governments and NGOs around theworld. However, ABC fails to consider the need to putHIV prevention directly into the hands of women and theinfluence of powerful conservative lobbies, many ofthem faith based, has often detrimentally skewed theABC strategy further. According to numerous studies,abstinence-only approaches have little proven benefit.For example, a recent study in the United States of HIV‘abstinence only’ and ‘abstinence plus’ programmes(promoting comprehensive safe sex strategies includingcondom use) indicated that the former do not decreasesexual risk among youths and “do not encourageabstinent behaviour but instead are ineffective forpreventing or decreasing sexual activity amongparticipants”. ‘Abstinence plus’ participants generallyknew more about HIV and AIDS. 94 The emphasis upon‘being faithful’ also risks presenting marriage as a riskfreeenvironment for women and girls who are not livingwith HIV and AIDS. As we have seen throughout thecourse of this report, marriage in fact is a main riskfactor for women in contracting HIV.This shift in emphasis is in large part the result of USpolicies initiated through the President’s EmergencyProgram for AIDS Relief (PEPFAR), the largest globalhealth grant ever announced by any donor government.The original $15 billion (now proposed to increase to$30 billion) HIV and AIDS grant provides a huge influx ofnew resources to countries with the greatest need,primarily those in sub-Saharan Africa. PEPFAR thus hasthe potential to change not only the course of thepandemic, but the politics and priorities aroundcondom-based prevention.PEPFAR stipulates that one-third of HIV preventionmonies must be spent on abstinence-only interventions.It advocates condom promotion only for so called highriskgroups such as sex workers and truck drivers, andcouples where only one partner is infected. 95 Accordingto ActionAid research in Nigeria, “PEPFAR funds focuson abstinence and fidelity education, mother-to-childtransmission and blood safety… Condom marketing willbe improved, but only for those thought to be at highrisk of being infected, such as prostitutes and truckdrivers. Condoms will not be marketed to young peopleor married couples.” 96 Such an emphasis ignores thelocal context in Nigeria and similar high-prevalencecountries. Indeed, PEPFAR does not recognise marriageas a risk factor or include married couples as a focus ofits programming interventions. By designating certaingroups as ‘high risk’, the programme not only promotesstigma and discrimination, but implies that other groupsare somehow immune from HIV. Furthermore, its focuson couples where only one partner is infected is futile incountries where the majority of people are unaware oftheir HIV status.3.2. Technologies and medical interventions:putting prevention directly in women's handsCondomsCondoms are the most effective method of HIVprevention currently available. However, many womenand girls do not have sufficient resources, information,knowledge or negotiating power in their sexual relationsto demand the use of a male condom. One sex workerin India explained that at the time of her infection, “I didnot know anything about safe sex. Some clientsbrought condoms that they used but [I] had no ideawhy it was used.” Even when women have theinformation, cultural expectation among both men andwomen can block condom use. As one Zimbabweanwoman living with HIV and AIDS reported:“…my husband tested positive before me, but myaunties together with my late husbanddisapproved [of] condom use, arguing that he hadpaid up all the bride wealth and therefore [I] wassupposed not to deny him sex, unprotected ornot… they accused condom use with lack of lovefor my late husband… everyone was against meand [I] had no option… [ended in tears].” 97Similarly, one woman in South Africa explained:“because of Venda culture, men initiate things. Soif a man does not initiate condom use, we don’tuse it. We think female condoms will help. Itwon’t be easy because he can think I want to usea condom because I am having an affair.” 98Although many women and girls may still need tonegotiate using the female condom, it may mitigate24 Walking the talk putting women's rights at the heart of the HIV and AIDS response

some of the problems facing women and girls. In SouthAfrica, for example, women surveyed were eager to seemore female condoms, arguing “that way we do nothave to ask the man because the condom is in mybody.” 99 Despite this interest, the female condom hasnever been promoted or distributed on the same scaleas the male condom. In Nigeria, for example, mostwomen and young girls did not know what a femalecondom looked like. 100Health officials and donors argue that this is the result ofcost. The current cost of a female condom isapproximately ten times the cost of most malecondoms, 101 although this could be reduced with highvolumedistribution and global purchasing. 102 The SouthAfrican government, which has one of the largest femalecondom programmes in the world, is still distributingless than 3 million female condoms per year, comparedto 386 million male condoms annually. 103 According to arecent study, increasing female condom distribution to10% of current male condom use could avert a further10,000 infections annually. 104 Furthermore, UNAIDS’recent guidelines to scale up HIV prevention efforts incountry105 barely mention female condoms, and mostgovernments and donors have not increased financialsupport to develop cheaper alternatives for productionof the female condom.While promoting male condom use can help to fostergreater responsibility amongst men for their actions, andprotect them against risk, there is a risk that an overemphasison male condoms reinforces men’s controlover sexual relations, at the expense of women.Governments and donors must take urgent action toinvest more in female condoms, raising awareness oftheir availability and empowering women and girls touse them. As expressed by one South Africaninterviewee: “It can be difficult introducing new things,but male condoms became known because they weremade available, we were not born with them here. Wethink it will be easier for young women. They will beinterested to test new things.” 106Gideon Mendel/Corbis/ActionAidAderonke Afolabi conducts an HIV and AIDS educationworkshop for teachers in Lagos, Nigeria.Walking the talk putting women's rights at the heart of the HIV and AIDS response 25

MicrobicidesMicrobicides are products, in the form of a gel, cream,film, suppository, sponge or vaginal ring, which wouldgradually release an active ingredient to block or disablethe HIV virus. While they do not yet exist, bothcontraceptive and non-contraceptive microbicides areunder development, to allow women the option ofbecoming pregnant while remaining protected againstHIV transmission. Such products would protectwomen’s right to health, but also allow them to realisetheir reproductive rights.Microbicides represent a crucial advance in femaleinitiatedHIV prevention methods, increasing women andgirls’ control over their body and sexual autonomy bygiving them the power to protect themselves. Indeed,research by the London School for Hygiene and TropicalMedicine and the Rockefeller Foundation indicates thataccess to and regular use of a microbicide by just 20%of women, even when only 60% effective, "could resultin 2.5 million HIV infections averted among females,males, and children in lower income countries”. 107There is increasing scientific confidence that withsufficient funding, a safe and effective microbicide couldbe developed within five to seven years. However,almost all microbicide research is conducted by publiclyfunded, non-profit and academic institutions, or smallbiotech companies. Large pharmaceutical companies“have not yet invested, primarily because microbicidesare a classic ‘public health good’ which would yieldtremendous benefits to society but for which the profitincentive to private investment is low.” 108 Externalfunding is therefore crucial. According to the GlobalCampaign for Microbicides, approximately US$280million is needed per year over the next five years. 109Donors and governments must invest more in thedevelopment of microbicides and subsequentdistribution in parallel to investment in female condoms,and in programmes to increase women’s power tonegotiate safer sex within relationships.Male circumcisionRecent research suggests that male circumcision offersmen and boys added protection from HIV and AIDS.However, many unanswered questions must be resolvedbefore it is considered a safe and effective HIV-preventionmethod for both women and men. Furthermore, givenwomen and girls’ limited negotiating power, emphasis onmale circumcision should not come at the expense offemale-controlled HIV prevention methods.Research on male circumcision so far has mostlyfocused on reducing sexual transmission of HIV andAIDS from women to men, 110 largely neglecting theimpact it may have on transmission to women, asacknowledged by UNAIDS and the WHO. Indeed,research has shown that there is no clear sign ofincreased protection for women when men arecircumcised. 112 In fact, there is concern that circumcisedmen may feel they no longer need to use condoms.As a result, donors, governments and multilateralorganisations must be careful not to promote malecircumcision in isolation from other, female-controlledHIV-prevention methods, including female condoms.Furthermore, information on male circumcision must beaccurate and presented in a way that promotes therights of women and girls and emphasisesmale responsibility.Post-exposure prophylaxisPost-exposure prophylaxis (PEP) is a short course ofantiretroviral therapy that, if delivered promptly afterexposure to HIV, may reduce the risk of infection. ManyEuropean countries, 113 Botswana, 114 South Africa, 115the WHO and others recommend it as a crucialprotection for health professionals from HIV. Yet PEPremains unavailable in many countries to communitycare providers (see Chapter 5), sex workers and victimsof gender-based violence, the majority of whomare women.PEP is most effective when delivered within 24 hours ofexposure, so it is crucial that it is easily accessible. Forwomen and girls who are the victims of sexual violence,this can cause particular problems. They may be tootraumatised to report the crime. When they do, policespecialised in sexual violence cases must act swiftly. Alack of training or awareness may leave women or girlswho are already victims of violent crime deprived of theirright to health and their right to enjoy the benefits ofscientific progress.For example, women interviewed in South Africa 116complained of the lack of protection by state actors, theinefficient processes to claim their rights, and theindifference and lack of response by the police. As onewoman said, “Our biggest problem here is that thedockets get lost and cases get dismissed.” 117 Staff fromthe Thohoyandou Victim Empowerment Project alsoquoted incidences where women who complained ofdomestic violence were told to come back with realevidence, such as bruises. 118 In Zimbabwe, a recentstudy found that PEP was available only in provincialhospitals, thus preventing women living in rural areasfrom accessing it; 99% of the women involved in thestudy had no information about PEP. 11926 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Box 3. The Gender Violence Recovery Centre (GVRC), KenyaBased in Nairobi’s women’s hospital, GVRC was launched in 2001 and focuses on the provision of medical andpsychosocial support to survivors of gender-based violence in east and central Africa. It is the only such facility inKenya and the east Africa region.To date, the GVRC has treated more than 4,500 survivors of violence, an average of 150 per month; 45% ofthose treated are children below the age of 16, and 4% are men and boys. 121 The centre provides integratedservices for sexual violence, including immediate emergency medical examination, organ reconstruction andsurgery, high vaginal swab to test for infection, hepatitis B and syphilis testing, pregnancy testing, HIV testing andPEP; it also provides counselling, with special attention to pregnancy prevention, medication and antiretrovirals.Counselling is given on a one-to-one basis and is linked with group counselling for the families of survivors,providing information and referrals for long-term shelters and legal aid for survivors and their families. Separatemonthly support groups for survivors of rape are available as well. GVCR also provides information, includingsimple written materials, statistics, awareness-raising through the media and community awareness-raisingprogrammes.The centre provides accommodation for family members. 122 This is particularly important in cases where “asurvivor requires constructive surgery to repair damaged sexual and internal organs, especially in the case ofchildren, since the average operation can cost between KShs 95,000 and KShs 130,000 [between $1,400 and$1,900]. Often the children require up to three operations and the GVRC normally has to provide accommodationfor the parent or guardian for the duration of the treatment.” 123GVRC invests in training and capacity-building for health workers, police, community leaders and counsellors, toeradicate stigma and discrimination in service delivery and to raise awareness about taboo issues such asviolence and sexuality. Police and judicial officers are invited to meet survivors at the hospital rather than in policestations or court to provide a safe and comfortable space for survivors to take legal action. Despite GVRC’smission to make its experience replicable and available for the public sector around the country, there is still noother facility like this in Kenya. Women in rural areas need to travel long distances to benefit from this service,and bear all the costs and complications that this represents physically and emotionally for them.As part of universal access to treatment, UNAIDS has setthe target of increasing the global coverage of PEP forwomen who have been raped from approximately 19% in2005 to 100% in 2010. 120 PEP must be widely availableto sex workers and victims of gender-based violence. Toachieve this target, it is crucial to raise awareness of PEPamong women, health professionals and the police. It isalso crucial that donors support governments to replicateand expand initiatives such as the Gender Violence andRecovery Centre in Kenya (see Box 3), particularly in ruraland more remote areas.It is also important to make PEP part of acomprehensive sexual and reproductive health service.Providing PEP primarily to sex workers and women whohave been raped risks stigmatising women and causingfurther discrimination. It also neglects the right to healthof one half of a married couple where, for example, theother partner is living with HIV and AIDS. If theircondom splits during sex, the morning-after pill maycurrently be available, but not PEP. Interventions suchas the GVRC must be expanded and multilateral andbilateral donors must encourage the use of PEP forwomen and girls.3.3. Services: prevention of mother-to-childtransmission-PlusPrevention of mother-to-child transmission (PMTCT) hasproven to be an effective response to reducing infantmortality rates at a very fast pace. Traditional PMTCTstrategies take a child-centred approach by preventingvertical transmission of HIV through the use of antiretroviraldrugs during pregnancy and labour, and bypromoting safer feeding practices. However, the narrowfocus on 'mother-to-child’ transmission may underminewomen’s rights by focusing responsibility for childrensolely on women and reinforcing the idea that awoman’s worth is only in her reproductive capabilities.For example, in some cases, women involved in PMTCTprogrammes are unable to continue their drug therapyWalking the talk putting women's rights at the heart of the HIV and AIDS response 27

after their pregnancy. 124 Even the term ‘mother-to-child’risks labelling women as the main bearers of thedisease to their offspring. Some organisations andservice providers have thus chosen to use the term‘parent-to-child’ transmission interventions (PPTCT)which acknowledges responsibilities of both parents.In response to these issues, new kinds of interventionsare also being scaled up. Prevention of mother-to-childtransmission-Plus (PMTCT-Plus), with the ‘plus’representing treatment for women and other familymembers living with HIV and AIDS, represents importantprogress in this field. Not only do PPTCT or PMTCT-Plusprogrammes offer a more holistic set of services forpregnant women living with HIV and AIDS, providingpreventative therapy, treatment and care for women intheir own right (including treatment options beyondpregnancy), they encourage the participation of men at allstages of pregnancy, delivery and care. This is ofparticular importance because, as we have notedthroughout this report, threats of violence or fear ofpartner desertion are significant obstacles to women’stesting, treatment, care and support. For example, aspart of a PMTCT-Plus programme in Côte d’Ivoire, trainedcounsellors not only help prepare for disclosure, butmitigate possible adverse consequences followingpartner notification of the woman’s HIV status. Servicesinclude counselling to sero-discordant couples to avoidblame and help them to make risk reduction planstogether, as well as referrals to support services forwomen experiencing abuse, violence or abandonment. 125Such comprehensive programmes must be scaled upsignificantly. Globally, fewer than 20% of pregnantwomen and girls living with HIV and AIDS receivePMTCT, 126 leaving many women and girls unable toprevent their children’s infection. Moreover most womenreceiving PMTCT are still not receiving confidential pretestcounselling services that could protect their right toinformed consent. 127 A considerable number of womenin high-prevalence countries still do not know that HIVand AIDS can be passed from mother to child,exposing the way in which knowledge is still not widelyavailable to everyone – in particular women – makingcounselling efforts more difficult and violating women’srights to information and health. 1283.4. Services: voluntary counselling and testingVoluntary counselling and testing (VCT) is the gateway totreatment, care and support services. If women and girlsare prevented from accessing counselling and testing,they are, by implication, denied their right to treatment,care and support and indeed to sexual and reproductivehealth information (including on HIV prevention) (seeChapter 2 for more information). VCT services mustrespect women’s rights, in particular their right to privacy.However, this doesn’t always happen. For example, poorstaff training means that VCT is not always voluntary orconfidential. The growing trend towards provider-initiatedtesting and counselling (PITC) is of particular concern. Itis crucial that this is delivered in a rights-based manner,for example, by ensuring that informed consent is givenbefore a test is taken and that follow-up care, supportand treatment services are available and accessible to allwho are tested.Women and girls must also be given the information tomake an informed decision whether or not to take anHIV test. 129 They need to understand what the test is forand what the post-test implications and outcomesmight be. Antenatal care, for example, has often led tothe violation of women and girls’ rights to privacy andinformed consent. 130 In some cases, it seems to bestandard medical practice to test for HIV withoutproperly informing or consulting the woman.If testing takes place without counselling and support,women are denied the psychosocial support they areentitled to as part of their right to health (see Chapter 5).Testing must also be free of charge to enable manywomen and girls to access these services andsubsequent treatment. Moreover, counselling has thepotential to reduce stigma if it involves couples as wellas individuals, and is supported with more resources fortraining and group education. 131In order for VCT to have a strong rights-basedapproach, women must be consulted in theircommunities by health policy makers and officials aboutwhat would make the services most accessible andacceptable to them. Programmes should emphasise theimportance of counselling and evidence-basedinformation to avoid stigma, and allow women to makethe decision to have an HIV test. Moreover, policymakers and health officials need to find ways toencourage VCT without resorting to coercion. Thisrequires respect for women’s right to information andright to privacy.As this chapter has shown, HIV prevention for womenand girls must address their “inadequate knowledgeabout AIDS, insufficient access to HIV-preventionservices, inability to negotiate safer sex, and a lack offemale-controlled HIV prevention methods, such asmicrobicides.” 132 If HIV prevention activities are tosucceed they must occur alongside other efforts, suchas legal reform, promotion of women’s rights,programmes to challenge gender inequalities andnorms, and socio-economic empowerment.28 Walking the talk putting women's rights at the heart of the HIV and AIDS response

3.5. Recommendations Donor governments1) Donor governments should help countrygovernments to expand and support existinginitiatives that provide integrated sexual andreproductive health rights (SRHR), gender-basedviolence (GBV) and HIV and AIDS services forwomen and girl survivors of violence, especially inrural areas and where violence against women is adriver of the pandemic.2) Donor governments should contribute their fairshare to the $280 million needed per year over thenext five years for research for microbicides.3) Donor governments should work with the UNFPA,UNIFEM and other multilateral organisations tosignificantly increase access to female condoms.Multilateral organisations1) UNAIDS and WHO should provide best practiceguidelines for the integration of SRHR, GBV andHIV and AIDS services, to enable service providersto provide a one-stop service for women and girls,in particular for survivors of violence.2) UNAIDS, UNFPA and the WHO should support aglobal-level campaign to make the female condomavailable and target men’s education to increasetheir acceptance of female-controlled HIVprevention methods.3) UNAIDS and the WHO, with the support of theGlobal Coalition on Women and AIDS, shoulddevelop guidelines for governments to make theirHIV-prevention services women’s rights-based, inparticular within the context of initiatives forprovider-initiated counselling and testing.Developing country governments1) National governments should require educationcurricula to include effective and comprehensivesexuality education for adolescents thatincorporates structural issues such as violenceagainst women and girls.2) National governments should scale up HIVpreventioncampaigns using innovative methods.Campaigns must be designed to provide longterm,evidence-based information and createempowering messages to women and girls andemphasising male responsibilities.3) National governments should increase investmentin information materials that explain to women andgirls their rights and the HIV-prevention methodsavailable to them. This information should beprovided in a way that is locally relevant andsustainable in the long-term.Walking the talk putting women's rights at the heart of the HIV and AIDS response 29

Gideon Mendel/Corbis/ActionAidNight nurse Joan Kadzangwe examines patients in theTB ward of Bottom hospital in Lilongwe, Malawi.4. Women’s rights anduniversal access toeffective treatment“Treatment costs are often impossible forthem (women) to bear. The ironic part isthat, when a woman discovers that herhusband is infected, she never ever leaveshis side. She tends to him even with theknowledge that he is the one who infectedher. Yet after his death, and sometimeseven while he is alive, he refuses to aid hersurvival even though it was him who hadjeopardised it in the first place.” 133Walking the talk research, Bangladesh, 2007Chapters 1 and 2 have already highlighted many of thebroader inequalities that hinder women and girls’access to essential HIV and AIDS services. However, asthis chapter will highlight, additional gender bias andviolations of women’s rights specifically underminewomen and girls’ access to ART. There is an urgentneed for expanded access for men and women to ART.Evidence suggests that more women than men haveaccess to ART. However, at least as important isensuring people adhere to treatment. Breaches of theright to privacy and the right to adequate food, forexample, may leave some women and girls who areliving with HIV and AIDS disempowered, discriminatedagainst and/or unable to access or adhere to treatment.International and national efforts must therefore ensurewomen and girls living with HIV and AIDS have universalaccess to effective treatment for HIV and AIDS. Suchaccess is grounded in fundamental human rights,including women’s right to health, privacy, equality and30 Walking the talk putting women's rights at the heart of the HIV and AIDS response

non-discrimination. Failure to do so may make universalaccess to effective treatment a distant dream for manywomen and girls.4.1. Access to treatment: is there agender bias?Are more men than women taking ART?UNAIDS estimates indicate that just over two millionpeople living with HIV and AIDS in low- and middleincomecountries were receiving ART by December2006. 134 Yet this number represents only a fraction oftotal need: a further five to seven million people –almost four times the number currently receivingtreatment – are in urgent need of ART. 135Current data indicates a gender bias in favour ofwomen, and that more women than men receive ART,at least in the public health system. Of 25 low- andmiddle-income countries with disaggregated treatmentdata available for at least 5,000 adults, 57% of thosereceiving treatment were women. 136 In those samecountries, women accounted for 51% of adults livingwith HIV and AIDS. Data collection must improve inorder to build up a more comprehensive picture oftreatment needs for women and men. Further researchis necessary to determine whether including statistics ofpeople insured through the private sector wouldsignificantly change the ratio of women to men receivingtreatment. Furthermore, countries, donors andinternational organisations must collect disaggregateddata across age cohorts and other social groups, asone Malawian study has done already, 137 data onadherence of women and girls to treatment once theybegin ART (see below), as well as numbers of thoseundergoing HIV testing and counselling. Furthermore,criteria regarding who can access ART need to bemade more transparent and subject to public debate.Only then can we obtain a comprehensive picture ofequity in treatment and ensure that every country’sNational AIDS Plan is rooted in an accurate picture ofwomen’s and men’s current access.Barriers to accessing treatment for women and girlsAs countries scale up services to achieve universalaccess to treatment, initiatives must incorporate a rightsbasedanalysis of the barriers faced by women and girls.In particular, treatment initiatives should mitigate theoverarching economic and social inequalities (seeChapter 2) that hinder women and girls’ access to HIVand AIDS services. Freedom of mobility, distance fromtravel clinics, safety issues around transport and theoverall cost of travel are some of the main obstaclesFigure 2: Women as a percentage of all adults receiving antiretroviral therapy versus women as apercentage of all adults living with HIV and AIDSArgentinaBotswanaBrazilBurundiCambodiaCameroonChinaCosta RicaCote d’IvoireDRCHaitiIndiaKenyaMalawiMozambiqueNamibiaNigeriaRwandaSouth AfricaSwazilandUgandaTanzaniaVenezuelaZambiaZimbabwepercentage of adultsliving with HIV andAIDS who are womenpercentage of adultson treatment who arewomen0% 10% 20% 30% 40% 50% 60% 70% 80%(Source: UNAIDS/WHO estimates 2007) 138Walking the talk putting women's rights at the heart of the HIV and AIDS response 31

women expressed to accessing treatment. For example,in Rwanda, women living with HIV and AIDS reportedtheir fears of night-time travel to reach the health clinicearly in the morning when ART is distributed. As onewoman remarked, “How can I get up at 3am then travelalone during the night to make sure I get ARVs? But aman can easily walk during the night.” 139As a result, one woman living with HIV and AIDSreported that she slept in the corridors of Nyagatarehospital without covers to ensure she could collect herprescribed ART the following morning. Mobile anddecentralised treatment centres in rural areas may beone way to help overcome some of the obstacles ofdistance and travel. In India, for example, mobile clinicsoffering counselling and testing services were set up,offering various models of service delivery tailored to theepidemiology, needs and lifestyles of particularpopulations. In a little under a year and a half, thenumber of clients using these clinics increased by 84%from the first four months the clinic was in existence. 140Costs associated with healthcare itself, as well asopportunistic costs such as the lost time and moneyassociated with travel, are other significant obstaclesdescribed by women. For many women running femaleheadedhouseholds, the need to work, cook and carefor others makes these barriers insurmountable. InZimbabwe, the introduction of user fees in hospitals, aswell as the high costs of doctor consultation fees makesaccessing healthcare services a challenge. 141 Costs arealso an issue for the prevention and treatment ofopportunistic infections (see Chapter 2). Paradoxically inmany country and donor programmes, ART may be freebut medicines for treatment of opportunistic infectionsare not.Finally, given that women living with HIV and AIDS mayface particularly severe discrimination if their statusbecomes public (see Chapter 2), treatment centres alsoneed to protect women and girls’ rights to privacy. Oneexample of a good practice in this area is the healthservice provided by a mining company in Free State,South Africa. In order to protect the confidentiality ofpatients living with HIV and AIDS, the clinic name is notexplicitly linked to HIV and AIDS. Instead, the HIV andAIDS clinic is in the same outpatient department asother specialised clinics. Furthermore, hospital files arestored in a separate, password-protected database. 142In contrast, certain rooms in many healthcare centres inSouth Africa are reserved for women living with HIV andAIDS. 143 ICW have reported the case of one womanliving with HIV and AIDS who, while waiting to see adoctor with other patients, was told by a nurse, “you,Field worker in Mozambique.who has come for your ARVs, go home and come backafter two days because we do not have them”. 1444.2. Adherence to treatment: it’s not justabout accessData must be collected to monitor the adherence ofwomen and girls to treatment. At present, there is noconsistent global collection of gender disaggregateddata on adherence to treatment. However, available datashows that nearly 40% of patients within sub-SaharanAfrica abandon treatment within two years of beginningit. 145 Research from a South African study illustratesgender differences in adherence to ART, with womenactually experiencing more success in adherence andsuperior clinical outcomes. 146 However, anecdotalevidence from our study and other research suggeststhat women and girls in many other communities faceparticular barriers to adherence. More rigorous researchis needed to establish whether there are commongender differentials in adherence across countries.Many women and girls receiving treatment are forced toshare medication with a non-tested husband. 147A Tanzanian woman, for example, told ICW, “Most of usJenny Matthews/ActionAid32 Walking the talk putting women's rights at the heart of the HIV and AIDS response

Box 4. The power of ART in Nigeria: from HIV and AIDS to health and wealth 154“My name is Mary Bulus, the third wife of late Mr Bulus. I live in Amper village, which is just 200 km from Jos.Unfortunately, after three months of marriage, our husband died of a ‘terrible health condition’. The other wivesalso died of the same condition.I went back to my parents. After some months, I started having frequent diarrhoea and drastic weight loss. I wasadvised to visit the hospital where I tested positive. It was then I realised that my husband and the other twowives had all died of AIDS. The doctor lamented that my CD4 count was very low and that I stood little chancefor survival. I was very afraid. When the community people heard about my condition, they stigmatised me andwould not buy the kunu zaki and zobo (local non-alcoholic drink) [that I sell] saying it must have beencontaminated with the virus. I started the ART drugs with the help of the church and Gospel Health andDevelopment (GHaDS), an NGO. Then I became stronger and could do other jobs.Two months later, I added weight and felt stronger. I decided to embark on farming. On one occasion in the farm,one of the villagers, surprised at my improvement said:“Am I seeing a ghost or a human being? Or have they started removing the virus from those living with it?”I now live a normal life and my parents are happy to see me agile again. I have improved my farm and sell severalbags of grains to retailers in the market. This was made possible through the Positive Living Support Scheme ofN50,000 [about $400] provided by GHaDS. Right now I am the only benefactor who has paid back the loansuccessfully and have enough capital to sustain my business.”women living with HIV and who are using ARVs face acommon problem that our husbands or partners tend toforce us to give them our ARV dose while he has nottested for HIV and doesn’t know his CD4 counts…Even if you refuse he will find where you keep yourmedicine and steal them.” 148 Fear of disclosure andsubsequent violence, discrimination or abandonment alsoleads many women and girls to try to hide theirmedication in order to conceal their HIV status. A recentstudy of 560 women in Zambia, for example, found that76% of women on ART did not adhere to their treatmentas prescribed because they were trying to hide theirpills. 149 More research is necessary however to determinethe global impact of gender relations on women’sadherence to ART.While the adherence of some women to ART isundermined by economic dependency on theirhusbands, or inadequate information regarding thecourse of treatment they must follow (see Chapter 2),efficacy of treatment may be undermined by lack ofaccess to food. Effectiveness of ART directly correlateswith a well-balanced diet. Lack of nutrients underminesan already weakened immune system, therebyincreasing the susceptibility of women living with HIVand AIDS to opportunistic infections. According to theWorld Health Organization, “optimal antiretroviraltreatment requires safe, clean drinking water and abalanced diet rich in energy, protein and micronutrients…good nutrition and clean water may make antiretroviraltherapy easier to take and help ensure thattreatment works effectively”. 150However, in situations such as extreme poverty, naturaldisasters or conflict, food security may be compromised.Furthermore, such situations mean that women may beforced to choose between treatment and food. In onereported case, a 44-year-old woman in Tanzania sold asix month supply of ART to get money to take care ofher grandchildren. 151 New research conducted in twodistricts in Rwanda found that women living with HIVand AIDS who stayed behind in the villages had littlemoney to afford nutritious food while their men workedand lived in cities. Furthermore, despite the fact thatwomen gather, prepare and serve the food in almostevery society, research from multiple sources indicatesthat women eat last, after ensuring their partners andchildren are fed. In situations of famine, this oftenmeans that women may not eat adequately or don’t eatat all. 152For ART or treatment for opportunistic infections to beeffective, the full course of treatment must be strictlyfollowed and the correct dosage taken as prescribed.Failure to do so can increase an individual’s risk ofsevere illness or can lead, in some circumstances, toWalking the talk putting women's rights at the heart of the HIV and AIDS response 33

the development of a drug-resistant strain of HIV. Asalready mentioned, it is therefore important thatgovernments and multilateral organisations monitor andevaluate women’s adherence to ART and designtreatment initiatives in response to the collected data.4.3. ART in resource limited settingsScaling up to universal access to treatment presents anenormous challenge for developing countries. Inresource limited settings, there may not be enoughsupplies for all patients living with HIV and AIDS whorequire treatment. Limited availability raises thornyethical questions as to how to ‘ration’ supplies and whogets priority in treatment distribution. Such issues are ofparticular concern to women and girls who may nothave the social and political power to advocate onbehalf of themselves. Recently, such issues have takeninternational prominence. UNAIDS has called for theestablishment of national ethics panels in recipientcountries, while WHO has commissioned a series ofbackground papers and a guidance document onethics, equity and access to ART. 153 Whereas decisionson resource distribution must ultimately be made atcountry level, guidance by the multilateral agenciesmust take into account the particular needs of womenand girls.As the story of Mary Bulus (see Box 4) indicates,effective treatment can make a dramatic difference tothe lives of women and girls living with HIV and AIDS.While the limited data currently available suggests thatmore women than men access public sector ART,women must overcome a distinctive set of barriers toaccess treatment and to follow the treatment regimen.Economic dependence, a lack of autonomy andconfidentiality turn accessing treatment into an ordealfor many women and girls. Donors, multilateralorganisations and country governments all have acritical role to play in addressing these barriers in theirHIV and AIDS interventions.4.4. Recommendations Donor governments1) Donor governments should ensure that theirfunding and funding processes address the barriersfaced by women and girls in accessing andadhering to treatment.2) Donor governments should provide more help tocountry governments to fund treatment literacyprogrammes and increase their funding for femalefriendlyhealth systems, including provision formobile drug distribution and treatment points.3) Donor governments should strengthen theircapacity to collect and disaggregate data on theirown treatment initiatives by gender, by developingsound indicators on gender equality and women’srights, and sharing their technical knowledge tosupport national governments to do the same.Multilateral organisations1) WHO should develop rights-based treatmentguidelines that focus upon, for example, increasingthe accessibility of treatment information, facilitiesand medications for women and girls living with HIVand AIDS.2) UNAIDS should develop and encourage thewidespread use of indicators to monitor women’sadherence to ART, including indicators on nutrition.34 Walking the talk putting women's rights at the heart of the HIV and AIDS response

3) The Global Fund to Fight AIDS, Tuberculosis andMalaria, WHO and other multilateral organisationsshould strengthen their capacity to collect anddisaggregate data on their own treatmentinitiatives by gender, use the data to supportnational AIDS treatment plans and budgets fordeveloping countries, and tailor their treatmentprogrammes accordingly.Developing country governments2) National governments should develop and strengthentheir capacity to disaggregate national data onaccess to ART. In particular, they must disaggregateaccess to ART by age as well as gender and monitorwomen and girls’ adherence to treatment.3) National governments should develop, fund andimplement national treatment plans and budgetswith a strong emphasis on women and girls inorder to achieve universal treatment.1) National governments should ensure that treatmentis accessible at the local level by making sure thatART and other HIV-related treatments are availableto women and girls living with HIV and AIDSthrough mobile and decentralised treatmentcentres, and by ensuring a wide range ofdistribution points. These centres and distributionpoints must provide nutritional support for womenand girls living with HIV and AIDS, and provideaccessible treatment information.Walking the talk putting women's rights at the heart of the HIV and AIDS response 35

Jenny Matthews/ActionAidMembers of Tilla Association of People Living With HIVand AIDS, Awassa, Ethiopia.5. Women’s rights anduniversal access to HIVand AIDS care andsupport“The care economy that was forced uponthem as women’s natural lot …not onlycornered them in the most direcircumstances, it… made them vulnerableto the disease against which they labor sohard. Their cultures of origin and nearuniversal systems of patriarchy… put themat the beginning and at the end of HIV’sengine of disease.” 155The right to health encompasses “a wide range ofsocio-economic factors that promote conditions inwhich people can lead a healthy life, and extends to theunderlying determinants of health”. 156 Indeed, accessand adherence to treatment, as explored in the previouschapter, is only one of many factors relevant for thehealth and wellbeing of women and girls living with HIVand AIDS. Care and support represent such critical“underlying health determinants”, ensuring that thoseliving with HIV and AIDS have the means to attain thehighest standard of physical and psychological healthand live their everyday lives with dignity.Chapter 2 has already touched upon how women andgirls fill the void in the absence of functioning nationalhealthcare systems, providing most of the care andsupport for people living with HIV and AIDS, despitehaving limited access to HIV and AIDS servicesthemselves. This chapter explores specific challengesfaced by women and girls in relation to care and36 Walking the talk putting women's rights at the heart of the HIV and AIDS response

support. While their efforts support whole families andentire communities, women and girls are neithersufficiently supported nor recognised for their careprovidingefforts. They face an unacceptable extraburden and an inability to claim their rights inenvironments that are often already highly challenging.5.1. What do we mean by ‘care and support’?Care and support, the least examined components of theHIV and AIDS continuum, have been defined in varyingways. For the purpose of this report, we define care andsupport for people living with or affected by HIV and AIDSas a package of interventions aimed at supportingpositive living and improving the quality of life for peopleliving with and affected by HIV and AIDS (see Box 5). Ineffect, care and support services contribute to therealisation of the right “to the enjoyment of the highestattainable standard of health conducive to living a life indignity,” as established by the International Covenant onEconomic, Social and Cultural Rights. 1575.2. Women and girls’ access to care andsupport servicesCare and support services are essential to the physicaland mental wellbeing of women and girls living with HIVand AIDS. While little disaggregated data exists todetermine the gendered aspects of access to HIV andAIDS care and support services, research conducted forthis report shows that women and girls who do accessthese services face formidable barriers. For example,women and girls may find it difficult to take time awayfrom household and income-generating duties, and oftenneed to seek permission or money from male relatives toattend support groups, counselling or health facilities.Access to psychosocial care and supportWhereas many families provide loving care and supportto their relatives living with HIV and AIDS, others rejectand stigmatise them. In such cases, psychosocial andemotional care and support – in the form of counselling,support groups and spiritual sustenance – are evenmore critical. Access to such support helps women andgirls living with HIV and AIDS to disclose their positivestatus, live positively and prevent HIV transmission. Italso helps to reduce the sense of shame andsubsequent isolation, providing information on life after apositive diagnosis. As Fatima, a widow living with HIVand AIDS in Jalilpur, West Bengal said:“Peer educators from Child in Need Institute(CINI) came for sensitisation talks in my villagepromoting VCT [voluntary counselling andtesting]. I developed interest and the next day Iwent to CINI for counselling. The counsellor wasgood to me and I thought, ‘there is actuallysomeone out here who cares to listen to myproblems’. She referred me to the South 24Parganas network for positive people. It was adream come true to actually join with women ofmy type. For a long time, I thought I was the onlyone in a basket full of problems. Everythingimproved since then; we started up a supportgroup and a small poultry farm. Life went on abit smoothly.” 159Box 5. Care and supportCare and support for people living with HIV and AIDS and their families can be categorised as fourinterrelated domains:1. Psychosocial – emotional support; spiritual support; counselling; bereavement support; reduction of stigmaand discrimination, and positive living.2. Medical – testing; treatment of AIDS-related illnesses and opportunistic infections, treatment information andtreatment adherence; prevention and treatment of sexually transmitted diseases; nursing, home and palliativeend-of-life care; prevention of parent-to-child transmission; post-exposure prophylaxis; pre-exposure prophylaxisand management of opportunistic infections, including TB.3. Socio-economic – such as welfare provisions (stipends, cash transfers, grants, food parcels, incomegeneration, help in the home) and employment opportunities; orphan support; adoption services; nutrition;education.4. Human rights and legal – access to care and protection against violence and discrimination; land, propertyand inheritance rights; succession planning.Walking the talk putting women's rights at the heart of the HIV and AIDS response 37

However, as highlighted in Chapter 3, VCT, PITC(provider-initiated testing and counselling) and othercounselling services may not be accessible to womenand girls. These services are crucial gateways tosupport groups (including faith-based groups), whichprovide the mainstay of care and support for womenand girls. These groups provide them with anopportunity to share survival strategies, information andexperiences, and to access counselling and advice.They also often provide life-changing emotional supportnetworks for those who may have been abandoned orostracised by friends and relatives, as well as offering asource of collective strength for advocacy on humanrights and gender equality. 160 Some support groupsprovide other kinds of assistance such as incomegeneratingactivities, advice on nutrition, positive living,orphan care and succession planning. The extent of theimpact of this psychosocial support is illustrated by thecomments of one support group member interviewedby ICW:“The people whom I met at Mashambanzon gaveme the strength to go on. They were alwayscheerful and they were always laughing. Duringmy first few days I could not believe that theywere HIV-positive. How can one be so happywhen she knows she is going to die?” 161Research undertaken for this report in Namibia foundhundreds of support groups, mostly attended bywomen. A similar situation can be seen in Ethiopia,where 50 out of 70 members of one association werewomen. Focus group participants in Namibia andEthiopia felt this disparity existed because women aremore likely to identify a need for support while men“curtain themselves and hesitate to come forward, takemedicine secretly without any information and consentof their family members”. 162 In some circumstances,focus group participants in Namibia reported that malepartners opposed women attending support groups forfear it will reveal their own HIV status:“Men make jokes about the activities of supportgroups and therefore create a barrier for otherpeople to become a member of our group.” 163In Namibia, women attending these groups are typicallyolder widows who do not need permission from aspouse. Members agreed that girls and young womenwere often unable to attend because of dependence ontheir family, husband or boyfriend. Leonard Shikollolo,Director of an HIV and AIDS NGO in Namibia calledTKMOAMS, highlights that many women in thecommunity would like to start a support group, but donot have the information, skills or funds necessary toorganise or sustain counselling, income generation andinformation-sharing activities. 164Donors and governments must deliver more funding tosupport groups of women and girls. Capacity-buildingsupport must also be channelled to organisations ofwomen and girls living with HIV and AIDS to enable themto develop skills around management, leadership, groupdynamics, team building, community mobilisation,advocacy and self-empowerment. Support must also begiven to groups dominated by males to increase femalemembership and leadership within their organisations.Such support must be both sustainable and provided ona much larger scale by donors, both geographically andin terms of breadth of financial support.Access to medical care and supportThe majority of medical care and support for peopleliving with HIV and AIDS takes place in the home.However, research for this report suggests that womenand girls’ access to home-based medical care andsupport often relies on men’s approval. A communitycare provider highlighted to ICW the impact on womenand girls’ ability to seek care when sick:“… it is difficult to access a sick female client untilthe husband approves... some men even lock theirgates when they see us coming, in most instancesmen accept caregivers at their homes when theybecome sick or bedridden… as long as they arestill mobile, they do not accept us…” 165In Ethiopia, for example, our research found that, whenboth the wife and husband are living with HIV and AIDS,care preference will often be given to the male. 166Furthermore, women and girls may be encouraged toput the health of the family before their own healthbecause of their role as primary care providers. Thisoften means they seek healthcare at a later stage thanmen, frequently when their illness is already welladvanced. One research participant from Pakistan, forexample, reported her in-laws telling her, “You areresponsible for everything for your children becausetheir father remains ill. So forget about your disease forthe sake of your children.” 167Another barrier to accessing medical care revolvesaround culture and belief. A significant number ofwomen in the developing world go to traditional healersinstead of formal health systems. Approximately 70-80% of the population in sub-Saharan Africa initially seea traditional doctor when they become sick. 168 InVanuatu, for example, while some areas lack nurses,doctors, or other medical staff, almost every communityhas a kleva, or traditional healer. She or he is often the38 Walking the talk putting women's rights at the heart of the HIV and AIDS response

first point of contact for any illness, includingopportunistic infections and STIs. While traditionalhealers may offer crucial emotional and spiritualsupport, they do not always provide correct informationand advice on HIV and AIDS.Access to socio-economic care and supportSocio-economic care and support includes access toincome-generating activities, food security, creditschemes, skills and vocational training, access to loansand banks and social protection. Socio-economic careand support is essential to ensure women and girlscope with the impact of HIV and AIDS and are able torealise their “right to a standard of living adequate forthe[ir] health and wellbeing” [and that of their family]“including food, clothing, housing and medical care andnecessary social services”. 169Social protection interventions, for example, have beenshown to increase the quality of life and health ofwomen and girls. A recent DFID pilot project in Zambiafound that “social transfers can have an immediateimpact on hunger and poverty, and a wider impact onthe poor accessing health and education services”. 170Despite this, access to social protection and incomegeneratingactivities is at best patchy, at worst nonexistent.As a result, there is an overwhelming demandfor these services from civil society, support groups andwomen and girls living with – or vulnerable to – HIV andAIDS so that they can realise their right to a decentstandard of living. To protect the economic rights ofwomen and girls, governments, with donors’ support,should increase social protection mechanisms to supportwomen living with HIV and AIDS with the costs of (amongothers) their rent, children’s education, food and clothing.Even where social protection interventions do currentlyexist, poor local implementation or poor awarenessamongst potential beneficiaries undermines their value.Governments must therefore provide accessibleinformation on available assistance such as disabilitygrants, child support and pensions, and removecustomary or civil laws that prohibit women fromaccessing banks, loans, land or credit.Research for this report shows that support groupmembers wanted to become more independent andself-supporting by earning their own money to visitmedical facilities, and living healthy and productive lives.Yet many NGOs lack the expertise to accomplishincome-generating projects successfully. In Pakistan,support-group members called for income-generationactivities so that people living with HIV and AIDS couldlive independent lives. They added that socio-economiccare and support should include accommodation costs,utility bills, marriage expenses, education costs for theirchildren and unemployment allowance. In South Africa,respondents cited vegetable gardens, bread-makingand knitting as areas where they could undertakeincome-generation activities – respondents wanted towork and earn to support themselves and their familiesbut lacked the funding and skills training to do so onanything but a very small scale. 171Despite the inadequacy of support for incomegeneration and economic empowerment of women andgirls, success stories abound. For example, anintervention by the Provincial Directorate of Women andSocial Action in Maputo, Mozambique, provided womenliving with HIV and AIDS with mobile phones andtraining on money management. The women wereunemployed, unable to buy sufficient food or some ofthe medications necessary for treatment ofopportunistic infections. However, after chargingcommunity members to use the mobile phones, thewomen were able to earn enough money to eat threemeals a day and to buy medicines. One of the womenreported that her family treated her with more dignity.Because of the income she earned, she was seen assomebody with something to contribute to society. 172To enable women and girls to claim their rights to adecent standard of living, to work and earn a living,governments and donors should increase their supportfor, institutionalise and expand strategies designed toincrease poor women’s financial independence. Thiswould include microcredit schemes, financial support forcare providers and local employment andeducation/training opportunities. These strategies mustalso be designed to empower women and girls to makekey financial decisions (see Chapter 2). Finally,governments and donors must fund the capacitybuildingof grassroots women’s organisations, supportgroups and networks of women living with HIV andAIDS to develop income-generation initiatives.Women’s rights and legal supportEnsuring that legislation and policies respect women’srights is key, but is of little practical value if women andgirls are unable to assert their rights. Despite loftylegislation and ratification of international human rightsinstruments, a lack of legal proceedings for rightsviolations contravenes the rights of women and girls tolegal redress. These violations can also leave womenand girls living with HIV and AIDS deprived of property,trapped in abusive relationships, or isolated from theirchildren and families.Walking the talk putting women's rights at the heart of the HIV and AIDS response 39

Gideon Mendel/Corbis/ActionAidBrenda Namukimba provides home-based care as part of theCommunity Care Programme, Uganda.In many circumstances, an absence of training forpolice and legal officers has meant a lack of awarenessof women’s rights. Lawyers often do not have thenecessary legal expertise to assist women who havebeen disinherited, or they are simply not aware of lawsrelating to women’s rights. In India, for example, legalprocesses can be accelerated for people living with HIVand AIDS, but this is not widely known within the legalprofession. 173 Training must therefore be provided forlegal officers and for national legislatures on women’slegal rights around property, inheritance and family law.This must not only include training on the law itself, butalso around the duty to respect and uphold laws insituations where women’s rights have been violated.Furthermore, legal redress is often impossible for themajority of women and girls because of the prohibitivecost of legal services, community disapproval, reprisalsfor betraying one’s culture or simply limited awarenessof their rights. 174 Women and girls may avoid civilcourts, for example, because of a lack of resources, tokeep families together, or because they are unable totravel. 175 The latter is particularly the case for ruralwomen as courts are often located in urban areas.Where legal support is available, clear information onhow to access this support is rare.To improve women and girls’ access to legal support,governments must provide materials on property andinheritance rights and succession planning through avariety of settings such as secondary school curricula,clinics and hospitals, support groups, marriagepreparation and VCT. 176 Governments and donors mustalso develop and fund accessible legal support andadvice services, including drop-in centres and legaladvice clinics that are open at times when women canaccess them. These services must provide informationin accessible ways, for example, in local languages andthrough community radio. Provision of legal aid for manywomen and girls is also essential if they are to accessthe legal system.5.3. Women and girls providing care andsupport servicesThe WHO defines community and home-based care asany form of care given to sick people within their homes,and includes physical, psychosocial, palliative andspiritual interventions. Community and home-based careare provided by ‘community care providers’ – a term thatincludes all people working in homes and communitieswho are responding to the health crisis and caring forthe sick and the dying. 177 In this report we use the term40 Walking the talk putting women's rights at the heart of the HIV and AIDS response

‘care provider’, rather than the often-used ‘care giver’,because the latter implies that the care is ‘given’ freely,almost as a gift, and therefore is assumed not to needrecompense. Part of this assumption is due toworldwide gender stereotypes that expect women andgirls to take responsibility for domestic and care work,and to do so for free. In South Africa, for example, oneevaluation of home-based care found that 91% ofcommunity care providers were women. 178To ease the burden on failing health systems (seeChapter 2), community care providers in many countrieshave taken on responsibilities for primary healthcare.Health services that are not considered a priority,especially those services governments think can beprovided by the community, are either under-funded orignored altogether. Care and support services for HIVand AIDS fall into this category. In sub-Saharan Africa,for example, hospital-based care is almost nonexistent179 and very little provision is made for homebasedcare services. A 2003 UNAIDS study showedthat, globally across 88 low and middle incomecountries, only 14% of people living with HIV and AIDSwho required home-based care had access to theseservices. 180 Given the spread and growing impact of HIVand AIDS in Africa, for example, the resulting burden oncommunities is reaching a critical point. This is starting tobe replicated across the developing world. In Thailand,for example, “two thirds of all adults with AIDS-relatedillnesses are nursed at home by parents”. 181Women and girls as primary (informal)care providersCommunity care providers can be split into two broadgroups: primary (or informal) care providers andsecondary (or formal) care providers. Primary careproviders are family members or close friends whoprovide care and support in the home, in what is oftentermed the ‘informal’ sector. These responsibilities fallalmost exclusively on women, and increasingly olderwomen and girls, who have little or no support andreceive no recognition for their work. Older women, forexample, are increasingly looking after their dying adultchildren and taking on parental responsibilities for theirgrandchildren and other orphans. In sub-SaharanAfrica, up to two-thirds of people living with HIV andAIDS are cared for by people in their 60s and 70s. Upto 60% of orphaned children live in grandparentheadedhouseholds. 182The impact on girls is also particularly severe. 183 Theyare often expected to care for their siblings and dyingparents, and take on caring and domestic duties whenparents are sick. These duties are particularly harsh fora child, but are made even worse by the psychologicaltrauma of losing one or both parents. Thisunsustainable care burden on women and girls isexacerbated when women, who are already providingcare in their family or community, fall sick with an AIDSrelatedillness. They then turn to another female relativeor to a secondary care provider, increasing the burdenfurther on care providers.Secondary (formal) care providersSecondary care providers are visiting nurses, healthworkers or community care providers from NGOS orcommunity groups using staff for care delivery. They arebased in the ‘formal’ sector and provide a range ofservices for people living with HIV and AIDS (see Box 6).Unsurprisingly, the strong gender demarcation of careprovision means that most secondary care providers arewomen. Some are also living with HIV and AIDS, andhave been involved with providing care in their broadercommunity since the beginning of the pandemic. As ahome-based care coordinator from Mozambique states:“I came from a state of being critically ill to beingwell as you can see today. It was this thatmotivated me to do this kind of work and helpmy neighbour. There are a lot of people who arein the state I was in then.” 184Currently most care and support services are beset by alack of coordination, unsustainable numbers of patientsand unreliable funding from external donors, all of whichhave a negative impact on the lives of female careproviders. For example, although an increasing numberof secondary care providers work for home-based careprojects established by networks of people living withHIV and AIDS, NGOs and community-organised groups,many secondary care providers work individually in theircommunities. Furthermore, many of these networks arenot linked to or supported by state health systems, andhave to work independently.Civil society and NGOs must create and/or strengthenlocal, national and regional community and home-basedcare alliances to allow care providers to shareknowledge, skills and resources. Recent examples ofthis are grassroots peer networks such as the Home-Based Care Alliances launched in Kenya in 2006 andUganda in 2007, which provide national platforms forpolicy lobbying and coordinated livelihoods work. 185However, the sustainable long-term solution to this mustbe greater investment in government care and supportservices as well as greater levels of support for – andco-ordination with – NGOs or community-based careorganisations. National state-led coordination andWalking the talk putting women's rights at the heart of the HIV and AIDS response 41

Box 6. Home-based care activities in Namibia• Education• Personal hygiene• Environment hygiene• Positive living• Counselling in the home-based care setting• Family counselling• Spiritual counselling• Bereavement counselling• Different types of medical care, for example: diarrhoea, fever, skin rash, etc.• Plan for follow-up care• Monitoring of drugs adherence• Record keeping• ReferralsResource: National Volunteers’ Conference, 2006standardisation of state and civil society responses,accompanied by the development of systems of referralthrough National AIDS Plans are critical to ensure theequitable delivery of a good standard of care, and alsothe rights of community care providers.5.4. The impact of providing care and supporton women and girlsThe true impact on women and girls providing care forpeople living with HIV and AIDS is difficult to assess. Itis only in recent years that international studies havespecifically focused on the issue. 186 Drawing on nationalstudies, they have shown that women and girl carerscan experience many positive effects from providingcare, including building their skills, the appreciation ofthe patient and their family, and the pleasure of seeing apatient recovering. However, without proper recognitionand support, care providers are forced to confront astaggering range of negative impacts that deny theirbasic rights.The financial and material cost for primarycare providersWhen a family member becomes infected with HIV ordevelops AIDS, the cost of treatment and care isextremely high. Even if ARVs are free or subsidised, thecost of CD4 tests and treating opportunistic infectionscan be excessive. A study in Zimbabwe, for example,found that the cost of care was about twice as high forHIV and AIDS patients than for patients with otherillnesses. 187 188 This considerable cost of care can betoo much for many women and girls to bear, especiallygiven that some women and girls are economicallydependent upon male relatives (see Chapter 2).A study in South Africa showed that members in 40%of 312 households had to take time off from work tocare for ill relatives. 189 Another study in South Africafound that, with the intense time commitment of caring,two-thirds of HIV and AIDS-affected householdsreported a loss of income. 190 For women and girlsworking in the informal sector, or for households reliantupon subsistence farming, this can be particularlydifficult. Older women and young girls are particularlyhard hit because they are often either too frail or tooyoung to generate sufficient income. They are also often‘invisible’ to authorities and so are frequently missed bywhatever support policies and programmes might becreated by the state. 191If their income cannot meet the costs of care, poorfamilies may be forced to redirect resources from theirown needs, eventually using up any savings they haveand selling assets such as land or property. When afamily member dies, there is the additional cost of thefuneral. If it is a male member of the household, womencare providers may lose their land and resources.42 Walking the talk putting women's rights at the heart of the HIV and AIDS response

In some circumstances, the cost of care plungeswomen and their dependents deeper and deeper intopoverty, denying their rights to an adequate standard ofliving. With no remaining resources, some women andgirls turn to informal or transactional sex work for funds,or for the support of a man who can provide the basicnecessities. In Tanzania, 8 out of 18 older women in onefocus group discussion said they had resorted totransactional sex to pay for food when they were unableto find casual work, or were “tired of begging fromneighbours or relatives”. 192 It is bitterly ironic that, in themidst of caring for people living with HIV and AIDS,some care providers find little option but to engage intransactional sex that so dramatically increases theirvulnerability to infection and re-infection with anotherstrain of HIV or other STIs.As covered earlier, there is a range of possible state orNGO-provided financial support options that should beextended to primary care providers – including socialprotection, cash transfers, loans and microcreditschemes. In South Africa and Botswana, for example, acare grant or allowance system is in place that is crucialfor the families that receive it. The challenges toproviding these are much bigger in low-incomecountries. In addition, specific support should betargeted at more vulnerable groups, such as girls andolder women, who are increasingly providing care. 193Some countries are now targeting support for olderwomen carers, such as Botswana and Lesotho, whichhave introduced a non-contributory pension fund, andthis has made a crucial difference in providing foressential items and reducing financial distress.There are also other general initiatives such as incomegenerationprojects, food security schemes and theabolition of health-system user fees that would allensure that a sickness in the family did not automaticallymean the gradual impoverishment and, in many cases,destitution of primary carers and their families.The financial costs for secondary care providersMany secondary care providers find they have to coversome of the financial costs of care out of their ownresources. Even when secondary care providers receivea stipend or financial support of some sort, it very rarelycovers these types of expenses. As one care provider ina study for this report states:“We walk for miles and miles in order to reachclients in other homesteads. Once we arethere clients expect a lot from us, like foodand even money. This puts pressure on ourpersonal resources.” 194Where secondary care providers may not have anyfinancial support to give, many rely on theirresourcefulness, networking with social workers for thepatients to access social grants where they areavailable. 195 In addition to supporting patients, secondarycare providers often have to cover their own work costs,including providing their own equipment and paying fortheir own transport to visit patients. In addition, providingcare often leaves secondary care providers with little orno time for extra income-generation activities. A recentstudy for this report found that 85% of secondary careproviders in Ethiopia spend all their working day providingcare and support services to patients in their homes, andBox 7. Case study in Mozambique: the importance of financial supportCarla Tivane is a member of Ahitipaluxene, an association of women living with HIV and AIDS in Mozambique. Sheprovides care twice a week to other people living with HIV and AIDS in her community. At first, she only received£6 a month, which barely covered her transport costs and was insufficient for her to support her four younggrandchildren. Furthermore, food insecurity undermined the effectiveness of her ARVs.In July 2006, Carla was one of the women who received the equivalent of £25 from an INGO small grant schemeto start a small income-generating activity of her choice. She decided to sell bread, fruit and a home-made fillingcalled badjia, which is traditionally eaten with bread. At the end of two months she began to repay the money,making payments slowly over the next 20 weeks. By August 2007 she reports that things are going better for her.“I no longer experience hunger and I can support my grandchildren. The business is going very well.” Using hersavings she has been able to expand her business and now sells biscuits to local children. When she is notproviding care twice a week, Carla is working on her business. One of the unexpected changes of this small granthas been that the women now value their time. Any activity proposed to Carla, such as extending the number ofdays for home visits beyond the agreed two days, is considered in terms of how much money she will be losingthat day. This economic empowerment has assisted Carla to say no to exploitation.Walking the talk putting women's rights at the heart of the HIV and AIDS response 43

have no time for other sources of income to feed theirchildren and themselves. 196Secondary care providers’ right to be paidA survey in southern Africa in 2005 identified sevendifferent models of care services across the region,ranging “from the very basic community-driven modelwhich is reliant on home visits by volunteers, to the fullycomprehensive care model which provides a wholespectrum of medical, psychological and spiritual care.” 197The more comprehensive models, like Bwafwano homebasedcare in Zambia, provide good support for womencare providers, such as training and some form of pay.However, currently, many home-based care organisationsuse large numbers of what are collectively termed‘volunteers’ to provide secondary home-based care, whoreceive little or no remuneration at all.Volunteers are an immensely valuable and importantpart of society, especially in communities seriouslyaffected by HIV and AIDS. They will continue to providean essential part of the response to HIV and AIDS.However, because most secondary care providers arewomen, and women’s work is routinely undervaluedwithin societies, the term ‘volunteer’ in this context hasbeen expanded and applied incorrectly to include allwomen within the formal economy who provide care tomembers of their community, but who receive little or notraining or recompense for the work they do.The UN defines volunteering as having threeessential characteristics:“First, the activity should not be undertakenprimarily for financial reward… Second, theactivity should be undertaken voluntarily,according to an individual’s own free-will…Third, the activity should be of benefit tosomeone other than the volunteer, or to societyat large, although it is recognised thatvolunteering brings significant benefit to thevolunteer as well.” 198Some secondary care providers have the resources tovolunteer their time and thus meet the UN definition of avolunteer. However, most secondary care providers canonly be called ‘volunteers’ because they currently workwithout pay. These are non-volunteer secondary careproviders because it is not necessarily the case thatthey do not want (or have) the right to be paid, or thatthey are willing to be made poorer for the work they do.Many secondary care providers are not willingvolunteers in this respect and, as the epidemic worsensin their communities, many secondary care providershave too many people to care for and little or no time tomake an alternative living. With the many extra costs ofproviding care, this means that many secondary careproviders plunge into deeper levels of poverty.Secondary care providers, therefore, should no longerbe referred to as volunteers unless they explicitly andwillingly meet the UN criteria above.The situation is complicated by the fact that definitionsof volunteering vary around the world. For example, insouthern Africa, the concept of ubuntu, which reflects astrong community spirit and sense of responsibility tosupport other members of the community, means manypoor and unpaid women secondary care providers feela strong motivation and experience it as a source ofpride in being referred to as ‘volunteers’. Research toexplore and understand the differing national andregional varying definitions of volunteering is neededinstead of universally applying largely westerndefinitions. This research can only really take place at anational level with the active participation of careproviders whom it most affects. Only then can cleardistinctions be made between volunteering and workthat should be recognised as paid employment.Secondary care providers should have the right tochoose to be a volunteer or a paid worker, a choice thatis currently denied them.Until now, many governments have regardedcommunity care as a ‘cost-effective response’ to thecrisis – women’s free labour saving money for the healthsystem. This short-sighted, needs-driven approachignores secondary care providers’ right to earn a livingfrom their work. It is nothing more than the exploitationof unpaid labour. Given the cycle of deprivation itcreates, it is both unsustainable and a false economy.The realisation of the call for secondary care providers tobe recognised and remunerated as workers will beprogressive. The transition will need the involvement andsupport of secondary care-providers and all 'dutybearers'responsible for the rights of secondary careproviders, including community-based organisations,NGOs, governments, donors and multilateral institutions.Some countries have begun to address the lack ofremuneration given to secondary care providers byintroducing legislation to ensure they are paid. InMozambique, for example, the government legislatedthat care providers receive 60% of the minimum wage(the current minimum salary is £26). 199 However, thesewages/stipends are still very low, and as such reinforcethe low valuation of women’s work in society. In mostcases it is insufficient to sustain a woman or her familyand so forces her to seek alternative income generation.44 Walking the talk putting women's rights at the heart of the HIV and AIDS response

The stipends can also be hard to access. For example,in order to receive the stipend in South Africa, it is firstnecessary to take an expensive training course to beaccredited, something way beyond the means of manycommunity care providers.It should be recognised, though, that some regularfinancial remuneration is an important step forward. Arecent regional study of care providers in four countriesin southern Africa found some evidence that because astipend was available in South Africa, care providersthere now viewed providing care as a legitimate sourceof employment. 200 However, in order to recognisesecondary care providers as workers that deserve a fairwage, there must be a huge conceptual shift at all levelsin the understanding, appreciation and recognition ofthe work they do. This involves a massive change in theunderstanding of gender roles and of the value ofwomen’s work per se.One solution is the greater involvement of men inproviding care. A model project that encourages youngmen to become involved in home-based care is‘Changemakers’ in Cameroon. By training young mento understand gender and male and female sexuality,and demystifying traditional beliefs and myths about HIVand AIDS, the men are developing more positiveattitudes towards people living with the disease. Theyhave further demonstrated a willingness to care forthem. However, governments, CBOs and NGOs needto be careful not to marginalise women or entrenchgender inequality within the care system for the sake ofinvolving men. One important way of preventing thisfrom happening is to ensure women are involved indecision-making and take leadership roles within CBOsand NGOs providing care and support. Another is forgovernments, civil society and NGOs to work with men,and particularly community and traditional leaders, tochallenge gender norms, and encourage them to rolemodel ‘caring male behaviour’.Another crucial change is the recognition of nonvolunteersecondary care providers as healthcareworkers so that these low-income female care providersare no longer dismissed as invisible free labour. A rightsbasedapproach demands that governments, donorsand international institutions recognise this category ofsecondary care providers as workers within theheathcare profession. As such, this classification helpsjustify their right to a fair wage. 201 While the WHO hasrecognised that “current methods of identifying healthworkers do not allow unpaid carers of sick people orvolunteers who provide other critical services to becounted,” 202 a major step forward would be therecognition of secondary care providers within theupcoming International Standard Classification ofOccupations by the ILO in 2008.Furthermore, all community and home-based careorganisations, and the NGOs that support them, mustdevelop comprehensive policies that recognise andprotect community care providers’ rights. Internationalguidelines, such as the NGO Code of Good Practice 203and the WHO Care Guidelines, 204 should also be updatedto directly support the remuneration of care providers andprovide clear guidelines for community-basedorganisations and NGOs on how to develop such policies.These policies might include pay scales, regulated hours,numbers of patients and guidance on including careproviders’ pay as part of funding proposals.Finally, it is important to state that secondary careproviders who willingly meet the criteria of ‘volunteer’must receive sufficient training, counselling and financialsupport. Furthermore, workplace policies in homebasedcare organisations must ensure volunteers have –and are aware of – their rights within the workplace. Avolunteer charter that enshrines these rights, such asthat recommended by the Secretary General’s TaskForce report in 2004, 205 must be pushed forward by theUN, integrated into National AIDS Plans andimplemented within community-based organisationsusing volunteers.The denial of educational, social and cultural rightsWomen and girls are often unable to claim theireducational, social and cultural rights as a result of theirrole as care providers. As care provision and domesticduties increase, girls in the family are nearly always thefirst to be pulled out of school, thus losing their right toan education. This is demonstrated by the example oftwo provinces in Kenya in 2001. The province ofNyanza, for example, recorded a very high HIVprevalencerate, and only 6% of those graduating atgrade 5 were girls. In contrast, Eastern Provincerecorded the lowest HIV-prevalence rate and 42% ofthose graduating were girls. Education officials notedthat 20 years before, the two provinces had roughlyequal percentages of girls graduating to grade 5. 206The importance of girls attending and finishing school isrecognised by policy-makers worldwide for the positiveeffect that it has on empowering women, reducing childmortality, and reducing the prevalence of HIV and AIDS(see Chapter 3). When girls leave school to act as careproviders it perpetuates a cycle of female disadvantage,leaving girls more vulnerable to HIV and AIDS.Governments must therefore ensure that girls and theirWalking the talk putting women's rights at the heart of the HIV and AIDS response 45

parents have every support necessary to realise girls’rights to education. This has been accomplished in someareas through the provision of cash transfers andpensions for families affected by HIV and AIDS. 207 Ifnecessary, these social protection interventions caninclude positive conditions so that families can claimfinancial support to allow their daughters to stay in school.Both primary and secondary care providers areincreasingly denied their right to recreation and leisuretime because of the overwhelming care responsibilitiesthey face. The intense time, financial and mentalcommitment of providing care also mean that careproviders often lose their right to participate incommunity activities or decision-making platforms. Thisis often exacerbated by the discrimination that careproviders face from some members of society, eitherbecause they are living with HIV and AIDS or becausethey are caring for someone else living with the illness.As highlighted in Chapter 2, women and girls’ politicalparticipation is crucial to improving health systems. Asmentioned earlier, the regulation of work performed bycare providers, including limits on the number ofpatients they support in a day and the numbers ofhours they work, would go a long way to ensure careproviders’ right to leisure and recreation. This wouldalso allow time for care providers to play a more visiblerole in community life, perhaps creating moreopportunity to break down stigma and discrimination.The physical and psychological impact ofproviding careIn addition to, and partly as a result of, the costs ofproviding care outlined above, women care providersexperience a wide range of psychological impacts fromtheir work that violate their right to favourableconditions of work. Caring for and then watching largenumbers of people die from AIDS-related illnessespushes most care providers to the extremes ofemotion, stress and depression. A care provider inSouth Africa recently explained the psychologicalimpact providing care can have:“I feel like a balloon, I am full of air in the morning andas the day goes by, the air disappears little by littleuntil what’s left is a crumpled piece of rubber.” 208This is a stark image of what is happening to individualcare providers in countries with high HIV and AIDSprevalence, where care providers have little or noaccess to counselling, support or training. In Lesotho,for example, 90% of community care providers arereported to be clinically depressed. 209 In the absence ofany external psychological support, care providers inSouth Africa report that they are talking to each other insupport groups and sharing experiences in order tocope. 210 Much more work needs to be done to providespecific counselling and psychosocial sessions for careproviders. Governments, specifically, must introduce orrevive mental health programmes at the primary carelevel to help community care providers deal with thepsychological stress of providing care.The scant training received by care providers exacerbatestheir stress. As noted before, lack of training can affect acare provider’s ability to claim a stipend (as is the case inSouth Africa), but it also significantly affects the standardof care received by the sick. Furthermore, it may placethe care provider herself at risk. Care providers cannotoperate effectively and safely if they are not well trained, ifthey are not properly supervised and mentored, and ifthey are not embedded within referral systems that allowthem to help people they are caring for get access socialand medical services. Although it is beyond the scope ofthis paper to detail the specific components of training, 211supervision and referral systems, it is absolutely essentialto clarify that the absence of such support will decreasethe quality of care provided, demoralise care providers,and lead to turnover and unsustainability.Most government training for care providers is basednear urban centres and frequently costs more moneyand time than a care provider or even a CBO canafford. There is sometimes peer-to-peer training amongsecondary care providers. However, this occurs lessoften with primary care providers, especially girls, whoseldom have access to support groups or other careproviders. Home-based care organisations have a dutyto ensure regular training on home-based care for allstaff by an accredited trainer. Care providers shouldhave full access to information on vertical transmission,post-exposure prophylaxis, adherence and treatmentliteracy. This training should also be targeted at primarycare providers by building secondary care providers’skills to provide outreach training to primary careproviders. For example, in Ahitipaluxene inMozambique, the carers receive on-the-job training fromthe nurse who works with them. Those who havereceived training mentioned that they feel moreappreciated and have greater confidence whileperforming their work duties:“It [the training] was very important. That iswhy I say that it is forbidden to forget whatwe learnt.” 212Even when care providers manage to acquire propertraining, their work is often physically dangerous46 Walking the talk putting women's rights at the heart of the HIV and AIDS response

ecause they do not have access to the equipmentthey need, such as home-based care kits. InMozambique, home-based care kits cost 2,000meticais each (US$78) – more than care providers earnin a month. 213 In Ethiopia, around 70% of respondentsin a recent study said that they do not receive a full kitfrom their associations and have to replace essentialitems such as soap and painkillers themselves. 214 Basicequipment such as gloves and home-based kitsincluding soap, detergent, disinfectants and antisepticsetc are essential and should be provided by thegovernment. Secondary care providers would alsobenefit from having a work uniform. Not only would thisenhance perceptions of their work as a profession, butit would increase their recognition and standing amonghospital staff.The stigma of HIV and AIDS also adds considerablestress to care providers, whether or not they themselvesare living with HIV and AIDS. Care providers sometimeshave to provide care to a patient secretly, so as not toexpose the patient to discrimination. Other careproviders report being isolated by their communities andcreating, in response, their own ‘families’ of careproviders and people living with HIV and AIDS. Societywidecampaigns to tackle stigma may tackle theproblem in the long-term but governments, donors andNGOs should also seek to develop or build the capacityof care providers’ associations and support groups,which create important peer support for care providers.It is amazing that despite these incredible levels ofstress and psychological trauma associated with caring,women care providers seem to be able to carry on.South African care givers, some of the few who doreceive a stipend for their work, report that there arethree things that help to keep them going:“One, despite being a very stressful job, caregiving gives them the satisfaction of being ableto help those in need. Second, it gives themsome form of financial resource, howevermeagre the stipend is. Third, it gives them skillsand the opportunity to hone them throughcontinuous practice.” However, it is “the popularsaying, ‘wathinta abafazi, wathinta imbokodo’(you strike a woman, you strike a rock) thatcomes to mind as probably the simplestexplanation of how these women keep onproviding care despite the odds.” 215As this chapter has shown, women and girls facerepeated violations of their rights when trying to accesscare and support services, and as a result of their roleas care providers. Donors, governments, multilateralorganisations and civil society all have a role to play inredressing these violations.5.5. Recommendations Donor governments1) Donors should increase support to countrygovernments to introduce social protectionmeasures, financial support for primary careproviders and build the capacity of grassrootswomen’s organisations, support groups andnetworks of women living with HIV and AIDS todevelop income-generation initiatives, microcreditschemes, local employment and education/training opportunities for women and girls.2) Donors should increase capacity-building supportto organisations of women and girls living with HIVand AIDS to enable them to develop skills aroundmanagement, leadership, group dynamics, teambuilding, community mobilisation, advocacy andself-empowerment. Support should also be givento official bodies with a male bias to increasefemale membership and leadership within theirorganisations.Walking the talk putting women's rights at the heart of the HIV and AIDS response 47

3) Donors should increase support and funding for careand support services. They must increase funding toremunerate, train and supervise secondary careproviders and to support the delivery of communityand home-based care that reduces the burden ofcare on women and girls. This should includefunding programmes to involve men in deliveringcommunity and home-based care.Multilateral organisations1) The WHO should lead multilateral organisations,donors and governments in recognising nonvolunteersecondary care providers as workers witha right to a fair wage. To do so, they have to startby revising the current classification of healthworkers to include all secondary care providers.2) The WHO must revise its Care Guidelines 216 todirectly support the remuneration of all nonvolunteercare providers and provide clearguidelines for CBOs and NGOs on how to developsuch policies.3) The UN must ensure that care and support, andthe role of women and girls in providing care andsupport, is recognised fully in internationalstatements and that future declarations on universalaccess address this issue.Developing country governments1) Governments should increase the provision ofsocial protection mechanisms to support womenand girls living with HIV and AIDS and primary careproviders with rent, children’s education, nutritionalsupport, clothes and other costs. Governmentsshould also provide accessible information onavailable assistance such as disability grants, childsupport and pensions, and remove customary orcivil laws that prohibit women from accessingbanks, loans, companies, land or credit.2) Governments should develop and fund accessiblelegal support and advice services, including drop-incentres and legal advice clinics, open at timeswhen women can access them and providinginformation in accessible ways. This must includelegal aid for women and girls, and training for legalofficers and for national legislatures on women’slegal rights around property, inheritance and familylaw, not only on the law itself, but also around theduty to respect and uphold laws in situations wherewomen’s rights have been violated.3) Governments should increase investment in careand support services, and ensure there are propersystems of referral between community homebasedcare (CHBC) programmes and the publichealth system; they must ensure that CHBCprogrammes are incorporated into district healthservice plans and National AIDS Plans; and theymust make sure that Standard of Care Guidelinesare introduced or revised within National HealthPlans to reduce the burden of care.Civil society organisations1) Civil society must create and/or strengthen local,national and regional community and home-basedcare alliances, to allow care providers to shareknowledge, skills and resources.2) All community and home-based care organisations,and the NGOs that support them, must developcomprehensive policies that recognise and protectcare providers' rights and ensure appropriate payfor non volunteer care providers.3) Home-based care organisations must ensureregular training for all secondary care providers byan accredited trainer on home-based care, with fullaccess to information on vertical transmission,post-exposure prophylaxis, adherence andtreatment literacy. This training should also betargeted at primary care providers directly, buildingon secondary care providers' skills to provideoutreach training.48 Walking the talk putting women's rights at the heart of the HIV and AIDS response

HIV rally, Nairobi, Kenya.Jess Hurd/Report Digital/ActionAidWalking the talk putting women's rights at the heart of the HIV and AIDS response 49

6. ConclusionThe HIV and AIDS pandemic is not just a healthconcern, it is an issue of human rights – and it is“[HIV and AIDS represents] the mostferocious assault ever made by acommunicable disease on women'shealth, and there is just no concertedcoalition of forces to go to thebarricades on women's behalf.” 217Stephen Lewis, former UN Special Envoyon AIDS in Africaincreasingly also an issue of women’s rights. This reporthas highlighted how the denial of women’s rights andgender inequalities time and again undermines universalaccess to prevention, treatment, care and support.Growing awareness of the gender dimensions of HIVand AIDS has created an important opportunity toaddress the disproportionate impact that the pandemicis having on women and girls. Formal commitments touniversal access – and the universal access processitself – is a powerful framework from which to advocatefor women’s rights. However, the lack of global targetsaddressing women’s rights and empowerment, and theabsence of consistent country-level targets, makes themove from merely recognising that HIV and AIDS has afemale face, to actually acting on it, a major challenge.To date, this challenge has been met by a devastatingstate of inaction.This report recommends the followingimmediate actions:Donor governments1) Donor governments must consult with women’smovements, local networks and movements ofwomen living with HIV and AIDS to ensure donorfunding reflects local priorities of the peopleinfected and affected by HIV and AIDS. They mustalso ensure that their policies and programmes donot reinforce inequalities.2) Donors must only fund evidence-informed,gender-sensitive programmes that take a rightsbasedapproach, including contributing their fairshare to microbicides and increasing access tothe female condom and other female-initiatedHIV-prevention methods.3) Donor governments must ensure long-term,predictable funding for the strengthening of healthsystems, in particular to ensure women-friendly andpro-poor health systems that integrate HIV andsexual and reproductive health rights services withHIV and AIDS prevention, treatment, care andsupport services.Multilateral organisations1) UNAIDS and the World Health Organization mustdevelop clear targets, guidelines and a strategy tosupport country governments to develop a rightsbasedand gender sensitive analysis for scaling upHIV and AIDS action.50 Walking the talk putting women's rights at the heart of the HIV and AIDS response

2) The Global Fund to Fight AIDS, Tuberculosis andMalaria must improve expertise on women’s rightsat all levels of the decision-making process anddevelop adequate indicators to monitor thatcountry coordinating mechanisms are reflecting thepriorities and rights of women and girls.3) The World Health Organization should leadmultilateral organisations, donors and governmentsin recognising secondary care providers as workerswith a right to a fair wage. To do so, they have tostart by revising the current classification of healthworkers to include all non volunteer secondarycare providers.Developing country governments1) National governments must base national AIDSplans on a rights-based analysis of the barriersfaced by women and girls in regard to HIVprevention, treatment, care and support services.This must have the participation of women andgirls, living with and affected by HIV and AIDS, atits heart.2) National governments must provide training andfunding and put systems in place to ensure thatadequate staffing, diagnostics, medicines and otherprovisions are made to treat opportunisticinfections that particularly affect women and girls,such as cervical cancer.3) National governments must develop, fund andimplement their national treatment plans andbudgets with a strong emphasis on women andgirls, particularly women and girls in poor and ruralcommunities, in order to achieve universal accessto treatment.Civil society organisations1) Civil society must ensure that a women’s rightsapproach is at the heart of their HIV and AIDSprogrammatic interventions and political advocacy.2) Civil society must create and/or strengthen local,national and regional community- and home-basedcare alliances, to allow care providers to shareknowledge, skills and resources.A look to the futureScaling up towards universal access demands a newapproach that goes beyond mere rhetoric to make areal difference on the ground. Indeed, only a few yearsago, the very concept of universal access was not evenon the radar of governments, donors or multilaterals.Now, it represents an international public commitmentto which the majority of governments have agreed.While the current reality of implementation may bedifferent, the process itself has the potential to effectsignificant change.The next step is for governments to commit to gendersensitive, measurable and time-bound indicators andtargets for scaling up access in all areas of prevention,treatment, care and support.With political will, proper resources, and the cooperationof multiple stakeholders, we can stem the course of thepandemic. The lives of millions of women and girlsdepend on it.Walking the talk putting women's rights at the heart of the HIV and AIDS response 51

Endnotes1World Health Organization (WHO),www.who.int/reproductivehealth/gender/sexualhealth.html#22World Health Organization. Keynote address at theinternational women’s summit: Women’s Leadershipon HIV and AIDS. Nairobi, Kenya, 5 July 2007.3UNAIDS. International women’s summit Kenya 2007:Changing lives, Changing communities. Nairobi,Kenya, 5 July 2007.4UNIFEM website on Gender and HIV/AIDS atwww.genderandaids.org/modules.php?name=Content&pa=showpage&pid=6.5UNAIDS. Statement to the 51st session of thecommission on the status of women. New York, 26February-9 March 2007, p.2.6Ibid.7UNFPA, HIV infection rates among women in LatinAmerica and the Caribbean continue to increase, 18April 2007, available athttp://www.unfpa.org/news/news.cfm?ID=9628United Nations General Assembly Political Declarationon HIV/AIDS, resolution A/RES/60/262, UNGASS2006, article 20, p3.9UNAIDS, Resource needs for an expanded responseto AIDS in low- and middle-income countries, 200510G8 Summit, Growth and responsibility in Africa, 8June 2007. Available at www.g-8.de/Content/EN/Artikel/__g8-summit/2007-06-07-summit-documents.htm11Pettit, J. and Wheeler, J. ‘Developing rights? Relatingdiscourse to context and practice’, in IDS Bulletin:Developing Rights, Vol. 36, No. 1, January 2005.12UNAIDS reference group on HIV and AIDS, 2007,Engaging donors on the protection and promotion ofHIV-related human rights, p1.13Beneria, L. and Bisnath, S. Gender and poverty: ananalysis for action (1996), p.6. Available athttp://iggi.unesco.or.kr/web/iggi_docs/02/952393547.pdf14Mahal, A. and Rao, B. ‘HIV/AIDS epidemics in India:an economic perspective’, Indian Journal of MedicalSciences, (April 2005), 582-600. Available athttp://icmr.nic.in/imjr/2005/April/0428.pdf15Women’s rights and universal access, ActionAid IndiaReport, 2007, p6.16UNAIDS/WHO. ‘Intensifying Prevention: The road touniversal access’, AIDS epidemic update: December2005, p.10, available at http://www.unaids.org.17WHO, 2005, Multi-country study on women’s healthand domestic violence against women, pp93-94.18Fried, S. Show us the money: is violence againstwomen on the HIV & AIDS donor agenda? WomenWon’t Wait Campaign, Washington; D.C.: ActionAid;2007, p.1.19Women’s rights and universal access, ActionAidBangladesh Report, 2007, p14.20Interview with Dr Halida Khandakar, Executive Directorof the Confidential approach to AIDS prevention,Women’s rights and universal access, ActionAidBangladesh Report, 2007, p.8.21Women’s rights and universal access, VSO RwandaReport, 2007, p10.22Human Rights Watch. A Dose of Reality: Women’sRights in the Fight Against HIV/AIDS, March 2005,Briefing Paper, available athttp://hrw.org/english/docs/2005/03/21/africa10357_txt.htm, accessed 15 August 2007.23Ibid.24Chase E and Aggleton P. Stigma, HIV/AIDS, andprevention of MTCT: A pilot study in Zambia, India,Ukraine, and Burkina Faso. The Panos Institute andUNICEF, 2001, p.25.25ICRW, Disentangling HIV and AIDS Stigma in Ethiopia,Tanzania and Zambia, 2003, p.2726Women’s rights and universal access, VSO PakistanReport, 2007, p7.27Women’s rights and universal access, VSO NepalReport, 2007, p7.28Women’s rights and universal access, VSO SouthAfrica Report, 2007, p.11.29ICW, 2004. Visibility, Voices and Vision: A call foraction from HIV positive women to policy-makers,p19.30Women’s rights and universal access, VSO ChinaFocus Group Research, 2007.31ICW, 2006. Mapping of experiences of access to care,treatment and support – Namibia, p6.32Women’s rights and universal access, ActionAid IndiaReport, 2007, p13.33ICW, 2004, Visibility, voices and vision: A call for actionfrom HIV positive women to policy-makers, p14.34From interview with Kousalaya Periasamy, PWN+,October 2007.35ICW, Advocacy tool – the sexual and reproductiverights and health of HIV positive women in SouthAfrica, 2006 and Advocacy tool – access to care,treatment and support for women living with HIV andAIDS in Swaziland, 2006.36Women’s rights and universal access, ActionAid SouthAfrica Report, 2007, p12.37Women’s rights and universal access, ActionAidBangladesh Report, 2007, p12.38Women’s rights and universal access, ActionAid IndiaReport, 200752 Walking the talk putting women's rights at the heart of the HIV and AIDS response

39Women’s rights and universal access, VSO NamibiaReport, 2007, p19.40UNICEF. The State of the World’s Children 2007, NewYork, 2006, p.18.41Women’s rights and universal access, VSO SouthAfrica Report, 2007, p.10.42Women’s rights and universal access, VSO NepalReport, 2007, p.8.43VSO, 2003. Gendering AIDS, p.11.44UNICEF, The State of the World’s Children 2007, NewYork, 2006. p18.45ICRW, To have and to hold: Women’s property andInheritance Rights in the Context of HIV/AIDS in sub-Saharan Africa, Working Paper June 2004, p3.46Kenya Land Alliance et al. Policy Brief: Women, Landand Property Rights and the Land Reforms in Kenya,2006, p1.47UNAIDS and UNICEF, Facing the future together:Report of the UN Secretary General's Task Force onWomen, Girls and HIV/AIDS in Southern Africa,UNAIDS, Johannesburg, 2004, pp20-21.48Women’s rights and universal access, VSO IndiaReport, 2007, p20.49Women’s rights and universal access, VSO ZimbabweReport, 2007, p8.50ICW, Advocacy tool – access to care, treatment andsupport for women living with HIV and AIDS inSwaziland, 2006.51Larsson et al. Antiretroviral treatment of HIV inUganda: a comparison of three different deliverymodels in a single hospital, Transactions of the RoyalSociety of Tropical Medicine and Hygiene (2007), 101,pp 885-892.52Women’s rights and universal access, VSO NepalReport, 2007, p8.53Global Coalition on Women and AIDS, Backgrounder:Care, Women, and AIDS, accessed 30 October 2007,pp1-2.54Women’s rights and universal access, VSO EthiopiaReport, 2007, p10.55United Nations General Assembly. Political Declarationon HIV/AIDS. Resolution adopted by the GeneralAssembly, A/ RES/60/262, Sixtieth session, 15 June2006, available athttp://data.unaids.org/pub/Report/2006/20060615_HLM_PoliticalDeclaration_ARES60262_en.pdf, lastvisited September 25 2007.56Ibid.57See for example Vandemooretele and Delamonica,2000; Kirby et al, 2004; Shuey et al, 1999.58World Bank, Education and HIV/AIDS: Window ofHope, 2002, p.7.59UNAIDS, Report on the global AIDS epidemic:Executive summary. A UNAIDS 10th anniversaryspecial edition, UNAIDS/06.20E, May 2006, p.4.60Women’s rights and universal access, VSO ZimbabweReport, 2007, p.7.61Women’s rights and universal access, VSO VanuatuReport, p.1162Boler, T. and Hargreaves, J. Girl power: The impact ofgirls’ education on HIV and sexual behaviour,ActionAid International, 2006, p.37.63Boler, T. and Hargreaves, J. Girl power: The impact ofgirls’ education on HIV and sexual behaviour,ActionAid International, 2006, p.564UNAIDS, UNFPA and UNIFEM, Women & HIV/AIDS:Confronting the Crisis, 2004, p.11.65Boler, Tania and Hargreaves, James. Girl power: Theimpact of girls’ education on HIV and sexualbehaviour, ActionAid International, 2006, p.566Women’s rights and universal access, VSO VanuatuReport, p.1167Women’s rights and universal access, ActionAid SouthAfrica Report, 2007, p.14.68Women’s rights and universal access, ActionAidNigeria Report, p.13.69EFA Global Monitoring Report 2007, StrongFoundations: Early childhood care and education,UNESCO Publishing, Paris, 2006, p. 3070EFA Global Monitoring Report 2007, StrongFoundations: Early childhood care and education,UNESCO Publishing, Paris, 2006, p. 2371EFA Global Monitoring Report 2007, StrongFoundations: Early childhood care and education,UNESCO Publishing, Paris, 2006, p. 4472Women’s rights and universal access, VSO VanuatuReport, 2007, p.13.73Ibid.74ActionAid International, Stop violence against girls inschool, 2004, available atwww.actionaid.org.uk/_content/documents/violenceagainstgirls.pdf, accessed October 23, 2007.75Human Rights Watch, Scared at School: sexualviolence against girls in South African Schools, 2001.www.hrw.org/reports/2001/safrica/ZA-FINAL-01.htm#P298_1948976www.id21.org/education/gender_violence/index/html77ActionAid International, Stop violence against girls inschool, 2004, available athttp://www.actionaid.org.uk/_content/documents/violenceagainstgirls.pdf, accessed October 23, 2007.78Human Rights Watch, Scared at School: Sexualviolence against girls in schools, available atwww.hrw.org/reports/2001/safrica/ZA-FINAL-01.htm#P298_1948979Panos Institute, Beyond victims and villains,addressing sexual violence in the education sector,2003, p. 39.Walking the talk putting women's rights at the heart of the HIV and AIDS response 53

80Women’s rights and universal access, VSO NepalReport, 2007, p.5.81Women’s rights and universal access, ActionAid SouthAfrica Report, 2007, p.6.82Women’s rights and universal access, ActionAidNigeria Report, 2007, p.20.83Women’s rights and universal access, ActionAid IndiaReport, 2007, p.3.84Women’s rights and universal access, ActionAidNigeria Report, 2007, p.13-1485Women’s rights and universal access, ActionAid IndiaReport, 2007.86Women’s rights and universal access, ActionAidBangladesh Report, 2007, p.14.87Women’s rights and universal access, ActionAidBangladesh Report, 2007, p.12.88Women’s rights and universal access, ActionAidBangladesh Report, 2007, p.14.89Ibid, p.13.90Women’s rights and universal access, ActionAidNigeria Report, 2007, p.20.91UNAIDS/WHO. Intensifying Prevention: The Road toUniversal Access. AIDS epidemic update: December2005, p.7, available at www.unaids.org.92Brown, J.E. 2002. Integration of Traditional and ClinicalMale Circumcision at Chogoria Hospital in CentralKenya. Available at www.rho.org/men+rh%209-02/men_brown.pdf93Women’s rights and universal access, VSOBangladesh Report, 2007, p.8.94Underhill et al. Sexual abstinence only programmes toprevent HIV infection in high income countries:systematic review, British Medical Journal, July 2007,335, 248, p.7-8, available atwww.bmj.com/cgi/content/full/335/7613/248,accessed 3 October, 2007.95CHANGE, Press release, ‘New analysis shows USglobal AIDS policy further undermining HIV preventionin sub-Saharan Africa’, 14/12/2005, available atwww.genderhealth.org/pubs/PR20051214.pdf96Women’s rights and universal access, ActionAidNigeria Report, 2007, p.15.97Women’s rights and universal access, VSO ZimbabweReport, 2007, p.8.98Women’s rights and universal access, ActionAid SouthAfrica Report, 2007, p.7.99Ibid.100Women’s rights and universal access, ActionAidNigeria Report, 2007, p.19.101Global Campaign for Microbicides and the GlobalCoalition on Women and AIDS. Observations andOutcomes from the Experts' Meeting on FemaleCondom, December 10, 2004, available atwww.global-campaign.org/clientfiles/FemaleCondomMeeting-Dec2004.pdf, accessedOctober 3, 2007.102Dowdy DW, Sweat MD, Holtgrave DR. Country-WideDistribution of the Nitrile Female Condom (FC2) inBrazil and South Africa: A Cost-Effectiveness Analysis.AIDS. 2006 Oct 24;20(16):2091-8.103South African Government Information, Health,available atwww.info.gov.za/aboutsa/health.htm#hiv_aids,accessed October 25, 2007.104Dowdy et al. Country-Wide Distribution of the NitrileFemale Condom (FC2) in Brazil and South Africa: ACost-Effectiveness Analysis. AIDS. 2006 Oct 24;20(16):2091-8.105UNAIDS, Practical guidelines for intensifying HIVprevention: towards universal access, UNAIDS/07.07E/ JC1274E, Geneva, 2007, available athttp://data.unaids.org/pub/Manual/2007/20070306_Prevention_Guidelines_Towards_Universal_Access_en.pdf, accessed 25 October, 2007.106Women’s rights and universal access, ActionAid SouthAfrica Report, 2007, p.7.107See Public Health Working Group of the MicrobicideInitiative funded by The Rockefeller Foundation, ThePublic Health Benefits of Microbicides in Lower-Income Countries Model Projections A Report,available atwww.microbicide.org/microbicideinfo/rockefeller/estimating.the.public.health.pdf, accessed 25 October,2007.108Global Campaign for Microbicides, Gender Equality inAIDS Prevention: Why we need prevention options forwomen, Fact Sheet #4, 2005, available atwww.global-campaign.org/clientfiles/FS4-GenderEquality-May05.pdf, last visited August 25,2007.109Global Campaign for Microbicides, Funding Needswebpage, available at www.globalcampaign.org/fundingneeds.htm,accessed 25October, 2007.110WHO/UNAIDS. New Data on male circumcision andHIV prevention: policy and programme implications,Technical Consultation Male Circumcision and HIVPrevention: Research Implications for Policy andProgramming Montreux, 6- 8 March 2007, p.3,available athttp://data.unaids.org/pub/Report/2007/mc_recommendations_en.pdf , accessed 6 October, 2007.111Ibid.112Turner, A. et al. ‘Men’s circumcision status andwomen’s risk of HIV acquisition in Zimbabwe andUganda’, in AIDS, pp.1779-1789 (21), 2007.113Rey, D. et al. ‘Post-exposure prophylaxis afteroccupational and non-occupational exposures to HIV:an overview of the policies implemented in 27European countries’, AIDS Care, Volume 12, Number6, 1 December 2000 , pp.695-701(7), 2000.54 Walking the talk putting women's rights at the heart of the HIV and AIDS response

114www.who.int/hiv/topics/prophylaxis/en/115Human Rights Watch. Deadly delay: South Africa’sefforts to prevent HIV in survivors of sexual violence,2004.116Women’s rights and universal access, ActionAid SouthAfrica Report, 2007, p.8.117Ibid.118Ibid.119ZWRCN. ‘Sexual rights and access to AIDS treatmentamong positive women in Zimbabwe: a situationalanalysis’, 2006, in ActionAid Zimbabwe, HIV ANDAIDS and Violence Against Women: Priorities forintervention, Zimbabwe, 2007, p.7.120UNAIDS. Financial resources required to achieveuniversal access to HIV prevention, treatment, careand support, (2007).121Nairobi Women’s Hospital, Gender Violence RecoveryCentre, Profile, 2007.122See ActionAid International Kenya. The intersectionbetween violence against women and girls and HIV &AIDS: A case study of Kenya, Kenya, 2007, p.9.123Ibid.124UNOHCHR, Integration of the human rights of womenand the gender perspective: intersections of violenceagainst women and HIV/AIDS, p.17.125www.mtctplus.org/pdf/Involvement_Male.pdf126Presentation made by Chewe Luo, ImplementingPMTCT and Paediatric HIV Care and treatmentimplementation in low and middle income countries:Global progress, at Women Deliver, GlobalConference, 18-20 October 2007.127Center for Reproductive Rights. Pregnant Womenliving with HIV/AIDS: Protecting human rights inprograms to prevent mother-to-child transmission ofHIV, Briefing Paper, August 2005, p.4, available atwww.reproductiverights.org, accessed 16August,2007.128UNAIDS/WHO. ‘Intensifying prevention: The road touniversal access’, AIDS epidemic update: December2005, p.13, available at www.unaids.org, accessed 6October, 2007.129Feldman, R et al. Positive women, voices and choices,London and Harare, International Community ofWomen living with HIV & AIDS, 2002, p.XIV availableat www.icw.org/icw/files/VoicesChoices.pdf, accessed25 August, 2007.130See Center for Reproductive Rights. Pregnant Womenliving with HIV/AIDS: Protecting Human Rights inPrograms to Prevent Mother-to-Child Transmission ofHIV, Briefing Paper, August 2005, available atwww.reproductiverights.org, accessed 16 August,2007.131Feldman, R., Manchester, J., & Maposhere, C. Positivewomen, voices and choices, London and Harare,International Community of Women living with HIV &AIDS, 2002, available atwww.icw.org/icw/files/VoicesChoices.pdf, last visitedAugust 25, 2007, p.XV.132UNAIDS and The Global Coalition of Women andAIDS, ‘HIV Prevention And Protection Efforts AreFailing Women And Girls: More young women arebecoming infected by husbands and long-termpartners – female-controlled HIV prevention methodsurgently needed’, Press Release, 2 February, 2004,133Women’s rights and universal access, ActionAidBangladesh Report, p.14.134UNAIDS, WHO, UNICEF. Towards universal access:scaling up priority HIV/AIDS interventions in the healthsector, progress report, April 2007, p.14.135Ibid.136Ethiopia and Romania also have disaggregatedtreatment data for more than 5,000 adults. They arenot included here because at the time of writing, upto-dateestimates of the number of women or adultsliving with HIV and AIDS were not available.137The REACH Trust. Monitoring equity and healthsystems in the provision of antiretroviral therapy (ART):Malawi Country Report, Equinet discussion paper 24May 2005.138UNAIDS, WHO, UNICEF. Towards universal access:scaling up priority HIV/AIDS interventions in the healthsector, progress report, April 2007, p.19.139Women’s rights and universal access, VSO RwandaReport, 2007, p.8140See information at www.psi.org/news/india-vct.pdf141Women’s rights and universal access, VSO ZimbabweReport, 2007, p.10.142Charalambous, S. et al. Feasibility and acceptability ofa specialist clinical service for HIV-infectedmineworkers in South Africa, AIDS Care, 16(1): 47-56(2004).143ICW. The sexual and reproductive rights and health ofHIV positive women in South Africa, 2006.144ICW. Mapping of experiences of access to care,treatment and support – Tanzania, 2006.145S. Rosen et al. ‘Patient Retention in AntiretroviralTherapy Programs in Sub-Saharan Africa: ASystematic Review’, 4 PLoS Medicine e298, abstract,introduction, and discussion only (Oct. 2007), p.1http://medicine.plosjournals.org/archive/1549-1676/4/10/pdf/10.1371_journal.pmed.0040298-L.pdf146Boulle A, Michaels D, Hildebrand K. Gender Aspectsof Access to ART and treatment outcomes in a SouthAfrican Township, XV International AIDS Conference.2004 Jul 11-16, Bangkok.147Zulu. K.P. Fear of HIV serodisclosure and ARTsuccess: the agony of HIV positive married women inZambia, 3rd IAS conference on HIV pathogenesis andtreatment 2005, Rio de Janeiro, Brazil, 24-27 July2005. Available atWalking the talk putting women's rights at the heart of the HIV and AIDS response 55

www.aegis.com/conferences/iashivpt/2005/TuPe11-9C03.pdf148ICW. Mapping of experiences of access to care,treatment and support – Tanzania, 2006149Paxton, S. et al. AIDS-related discrimination in Asia,AIDS Care, 17(4): 413-424, 2005.150WHO, AIDS treatment, nutrition, and foodsupplements, 30 March 2005. Available atwww.who.int/3by5/mediacentre/fsFood/en/151ICW. Mapping of experiences of access to care,treatment and support – Tanzania, 2006.152Women’s rights and universal access, VSO RwandaReport, 2007. Also see World Food Programme,http://www.wfp.org/aboutwfp/introduction/hunger_who.asp?section=1&sub_section=1153Am Journal of Public Health, 2005 July 95(7) 1173-1180. Which Patients First? Setting Priorities for AntiretroviralTherapy Where Resources are Limited.154Women’s rights and universal access, ActionAidNigeria Report, 2007, p.8.155B.K. Baker. Paying for Care Labor: Choices andcontradictions in a community healthcare workercampaign, 2006. p.6.156Committee on Economic, Social and Cultural Rights,2000, Gen. Comment 12, The Right to the HighestAttainable Standard of Health, para 4, U.N. Doc.E/C.12/2000/4.157Committee on Economic, Social and Cultural Rights,2000, Gen. Comment 14, The Right to the HighestAttainable Standard of Health, para 1, U.N. Doc.E/C.12/2000/4.158Adapted from WHO. A Guide to Monitoring andEvaluation HIV/AIDS Care and Support, 2004, pp.5-6.159Women’s rights and universal access, VSO IndiaReport, 2007. p30.160ICW. 2004, Vision Paper 4.161ICW. 2004, Visibility, Voices and Vision: A call foraction from HIV positive women to policy-makers, p5.162Women’s rights and universal access, VSO EthiopiaReport, 2007, p.8.163Women’s rights and universal access, VSO NamibiaReport, 2007, p.23.164Women’s rights and universal access, VSO NamibiaReport, 2007: p.30.165Women’s rights and universal access, VSO ZimbabweReport, 2007, p10.166Women’s rights and universal access, VSO EthiopiaReport, 2007, p8.167Ibid. p7.168TMTP (2006). Progress report on the third mediumtermplan on HIV/AIDS. April 2004 - 31 March 2006.Directorate of Special Programmes. Division ExpandedNational HIV/AIDS Coordination. Windhoek. Namibia.169Universal Declaration of Human Rights, 1948, Article25.1.170DFID. Can low-income countries in Africa afford socialtransfers? Briefing, November 2005, p1.171Women’s rights and universal access, VSO SouthAfrica Report, 2007, p.13.172VSO, 2005, Mozambique cell phone case study.173VSO, 2003. Gendering AIDS, p.33.174UNAIDS. The Global Coalition on Women and AIDS,2004. Facing the future together: Report of theSecretary General’s task force on women, girls andHIV/AIDS in southern Africa, p.22.175Ibid.176Adapted from UNAIDS. The Global Coalition on Womenand AIDS, 2004. Facing the future together: Report ofthe Secretary General’s task force on women, girls andHIV/AIDS in southern Africa, pp35-36177VSO. Reducing the Burden of HIV & AIDS care onwomen and girls, 2006, p.7.178CASE, ‘A national evaluation of home and communitybasedcare, 2005 in Southern Africa’, PartnershipProgramme 2005. Impact of Home Based Care onWomen & Girls in Southern Africa, p.6.179Harding, R. and Higginson, I.J. ‘Palliative care in sub-Saharan Africa: an appraisal of reported activities,evidence and opportunities’. Lancet 2005, Volume365, Issue 9475, Pages 1971-1977180USAID, UNAIDS, WHO, UNICEF, Policy Project, June2004, Coverage of selected services for HIV/AIDSprevention, care and support in low and middleincomecountries in 2003.181Paul Godfred, 2006. Cost of care, HelpAgeInternational presentation.182The Cost of care, roundtable discussion hosted byDFID, HelpAge International and Global Action onAging, New York, 2 June 2006.183See for example: Task Force on women, girls and HIV/AIDS in Southern Africa, 2004, Facing the futuretogether, p.38-41; UNAIDS/ANFPA/UNIFEM, 2004,Women and HIV /AIDS: Confronting the Crisis, p.31-33184Women’s rights and universal access, VSOMozambique Report, 2007, p.9.185HelpAge International, 2006; p.3.186For example: VSO, Reducing the burden of HIV andAIDS care on women and girls, 2006.187Hansen et al. 2000.188Southern Africa Partnership Programme (SAPP), 2005,p.25.189Ibid, p.26.190Steinberg, M. et al, 2002. ‘Hitting Home: howhouseholds cope with the impact of HIV & AIDS’. InThe Global Coalition of Women and AIDS ‘SupportWomen Care providers’ Fight AIDS. Issue 5.56 Walking the talk putting women's rights at the heart of the HIV and AIDS response

191USAID/UNICEF/UNAIDS/World FoodProgramme/Policy Project-Futures Group International,2003-4, Rapid country assessment, analysis andaction planning initiative on behalf of orphans andother vulnerable children in sub-Saharan Africa.192RFE and HelpAge International, 2004. The cost oflove: older people in the fight against AIDS in Tanzania,p.9.193See for example: Save The Children, 2005,Bottlenecks and drip-feeds; and HelpageInternational/IDS/Save The Children, 2005, MakingCash Count194Women’s rights and universal access, VSO NamibiaReport, 2007: p.26.195Women’s rights and universal access, VSO SouthAfrica Report, 2007: p.13.196Women’s rights and universal access, VSO EthiopiaReport, 2007, p.10.197Southern Africa Partnership Programme (SAPP).Impact of home-based care on women and girls,2005; p.11.198United Nations Volunteers Report, prepared for the UNGeneral Assembly Special Session on SocialDevelopment, Geneva, February 2001.199Women’s rights and universal access, VSOMozambique Report, 2007, p.8200ActionAid International. Women bailing out the state:the real costs of home-based care programmes;2007, p.14.201These rights are enshrined in International Covenanton Economic, Social and Cultural Rights, 1976, Article6: “the right of everyone to the opportunity to gain hisliving by work which he freely chooses or accepts”;and Article 11: “the right of everyone to an adequatestandard of living”.www.unhchr.ch/html/menu3/b/a_cescr.htm.202WHO. Working together for health, 2006, p.2.209Brook. K. Baker. Paying for care labor: choices andcontradictions in a community healthcare workercampaign, 2006.210Women’s rights and universal access, VSO SouthAfrica Report, 2007, p.12.211Brook K. et al. Systems support for task-shifting tocommunity health workers (Global Health WorkforceAlliance, Health Workforce Advocacy Initiative October5, 2007).212Women’s rights and universal access, VSOMozambique Report, 2007, p.9.213Ibid, p.9214Women’s rights and universal access, VSO EthiopiaReport, 2007, p.10.215Women’s rights and universal access, VSO SouthAfrica Report, 2007, p.13.216WHO. Community home-based care in resourcelimited settings, 2002.217Speech delivered at the University of Pennsylvania'sSummit on Global Issues in Women's Health StephenLewis, UN Special Envoy for HIV/AIDS in Africa,Philadelphia, USA, 26 April 2005203The NGO HIV/AIDS Code of Practice Project.Renewing our voice: code of good practice for NGOsresponding to HIV/AIDS, 2004.204WHO. Community home-based care in resourcelimited settings, 2002.205UNAIDS. The Global Coalition on Women and AIDS,2004. Facing the future together: Report of theSecretary General’s task force on women, girls andHIV/AIDS in southern Africa, p40.206GEMSA. Unpaid care work and the girl child: HumanRights Watch Interview with WKK. Kimalat, PermanentSecretary for Ministry of Education, Nairobi, Kenya,March 5, 2001.207Save The Children, HelpAge International and IDS.Making cash count, 2006, p.3.208Women’s rights and universal access, VSO SouthAfrica Report, 2007, p.10.Walking the talk putting women's rights at the heart of the HIV and AIDS response 57

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