1. International Community of Women Living with HIV & AIDS Eastern Africa Violations Of Sexual and Reproductive Health & Rights of Women Living with HIV In Clinical and Community Settings in Uganda International Community of Women Living with HIV in Eastern Africa (ICWEA) www.icwea.org

2. International Community of Women Living with HIV & AIDS Eastern Africa Background In Uganda, national HIV prevalence is 7.3% but 8.3% among women Women are affected more by HIV, including new infections Women living with HIV have specific and unique Sexual Reproductive Health needs to protect their own health as well as prevent MTCT Women living with HIV experience stigma, discrimination and violation of their rights Little information available on forced and/or coerced sterilization of women living with HIV

3. International Community of Women Living with HIV & AIDS Eastern Africa Literature Most literature documents matters relating to stigma and discrimination in health care and community settings Limited data on forced/coerced sterilization and associated violations Most reports do not explore violation of other rights e.g. dignity, liberty & personal security Similar studies conducted in Namibia, Kenya and South Africa

4. International Community of Women Living with HIV & AIDS Eastern Africa Policy Gaps Nations across the world have made tremendous progress within several legal regimes and policies that address HIV&AIDS related matters Current policies do not explicitly address unique Sexual Reproductive Health and Rights needs and priorities of women living with HIV But largely focus on HIV treatment, PMTCT/EMTCT but are silent on violations that women endure Silence has implications on effective delivery and management of HIV response interventions Uganda HIV Prevention & AIDS Control Act (2014) contentious clauses may worsen stigma and discrimination

5. International Community of Women Living with HIV & AIDS Eastern Africa Purpose & Objectives Purpose Examine violations of rights of women of reproductive age living with HIV as they seek Sexual and Reproductive Health services in clinical settings Objectives 1.To document experiences of women of reproductive age who are living with HIV with focus on forced/coerced sterilization or other SRHR violations 2.To identify the social and psychological and financial effects of coerced and/or forced sterilization and other SRHR violations of women living with HIV 3.To identify immediate and long-term support needs of women living with HIV who experience SRHR violations 4.To solicit policy and/or programme initiatives to promote SRHR of women living with HIV in clinical settings

6. International Community of Women Living with HIV & AIDS Eastern Africa Methodology Qualitative - desk review Quantitative - field survey National level study covering 8 districts in 9 regions – High HIV prevalence – Availability of regional referral hospital Study participants – women living with HIV of reproductive age (15-49) Sample size – 700 Focus Group Discussions Key Informant Interviews – NGOs, Government leaders and technical staff, service providers, PLHIV, UNAIDS etc In-depth Interviews Ethical clearance and approval and Informed consent Research assistants were young women living with HIV

7. International Community of Women Living with HIV & AIDS Eastern Africa Findings SRHR services – 88% of women had received SRH guidance and counseling from health workers; 11% had not – Source of counseling was health workers (89.9%) and social workers (13.5% – Counseling done after testing for HIV – 71% said counseling was focused on family planning – 15% were advised to stop having children – Main family planning methods women were advised to use – injectables (33%), Condoms (25%) and pills (12%)

8. International Community of Women Living with HIV & AIDS Eastern Africa Findings Ctd. Coerced and/or forced 20/72 who were sterilized were forced or coerced Ages – 19 - 44 years, average of 27 years Low levels of education – 54% primary school level, 28% secondary school level, 11% never been to school, 2.3% high school, 4% tertiary education, 2% vocational education 39.2% from rural areas, 31.% from peri-urban/small towns and 29% urban Low income earners – 34% farmers, 22.6% retail, 4.3% civil servants, 8.4% housewives, 2.3% engaged in cross-border trade, 9.1% employed, 11.2% casual work, 6.1% students, 1.6% volunteers

9. International Community of Women Living with HIV & AIDS Eastern Africa SRHR Violations: Clinical settings Misinformation that fallopian tubes would be untied later “The issue was like when they tell them “Tuzisiba” (we tie them – fallopian tubes) the women understand as in they can be opened but at a later date so it is the communication gap. They should actually be telling them “tuzisala busazi” [we cut them] as in because when they tell them “tuzisiba” [we tie them) the women think maybe when they want to give birth they can be opened/untied…” (KII, Masaka) No consultation or consent sought before sterilization No information that procedure (sterilization) was performed on the women Rude health workers who also blamed women living with HIV for getting pregnant and delay to offer medical treatment Poor health service delivery and facilities – improved over the years Stigma and discrimination in health centres

10. International Community of Women Living with HIV & AIDS Eastern Africa SRHR Violations: Community settings Forced abortions especially in community Restricted mobility to access SRHR services & information Gender-based violence Abandonment by spouses Women forced to give birth beyond number of children they desire Stigma and discrimination

11. International Community of Women Living with HIV & AIDS Eastern Africa SRHR Violations: household settings Cultural and social factors remain barriers to access to SRHR services e.g. unequal power relations leading to women’s low bargaining power, limited education, low economic status Disclosure associated with abandonment, stigma, discrimination and violence

12. International Community of Women Living with HIV & AIDS Eastern Africa Factors inhibiting SRHR Violations Women lack information about their rights Limited decision making & unequal power relations – women versus health worker and women versus spouse or family member (power dynamics) Low self-esteem

13. International Community of Women Living with HIV & AIDS Eastern Africa Forced sterilization during pregnancy and child birth 95% of forced/coerced sterilization occurred when women had to undergo cesarean-section Nakayiwa underwent sterilization in 2008 at a private hospital during a C-section. “Neither me, my husband or my mother consented. I discovered later, during examination when I went for treatment that I had been sterilized” “In 2005, after I had my last born, my husband consented to sterilization without my knowledge. He had asked me previously but I refused, preferring the injection. I discovered 4 years later when I went to hospital when I got abdominal pains”

14. International Community of Women Living with HIV & AIDS Eastern Africa Coerced sterilization Nyakishiki was sterilized in 2013 at 33 years in a government hospital." I was advised to undergo sterilization for fear that I would die. I was not aware of other family planning methods” “I was misinformed during child birth that I would be given an injection to prevent child birth in five years. I later learnt that my Uncle had consented to sterilization when I sought treatment for stomach pain. I saw it on the forms” – Atiku Joy (2003)

15. International Community of Women Living with HIV & AIDS Eastern Africa Effects of violations Inability to give birth is negatively perceived in community Stigma and discrimination Psycho-social effects – Anxiety, feeling worthless, out of place, isolation “The man I was married to died and I got another who does not know about the sterilization and is demanding for a child. I have never disclosed it to him” Diminished desire for sex affects relationships – painful sexual intercourse and weakness Conflicts with spouses after disclosure – abandonment, divorce, polygamy Financial and economic effects – loss of jobs due to weakness and abandonment by breadwinners

16. International Community of Women Living with HIV & AIDS Eastern Africa Support needs Legal – courts of law, Local Council system, human rights commission, Police proborno services e.g. FIDA – They need evidence, which most women do not have Psycho-socio support – counseling, confidence building & social support networks,

17. International Community of Women Living with HIV & AIDS Eastern Africa Recommendations Capacity building and sensitization: – Health workers on provision of quality and non-discriminative care, encouraging them to provide right information as well as adhere to the ethics of modern health care anchored in the principle of informed consent – Of women on their rights and enhancing their agency – Community dialogues involving massive campaign and sensitization of communities with particular focus on involving men to increase their knowledge and appreciation of the SRHR of women living with HIV Facilitate institutions and mechanisms for supporting women living with HIV Legal and policy review and development – Review tubal ligation protocols and procedures and ensure appropriate language of communication – ensuring information is made available during antenatal clinics – Review guidelines and procedures for emergency tubal ligation

18. International Community of Women Living with HIV & AIDS Eastern Africa Recommendations Ctd. Provide legal redress and justice to women who have undergone SRHR violations, especially forced/coerced sterilization Increase investment/funding in SRHR and family planning choices and options for women living with HIV CSOs, women organizations and other organizations to scale up advocacy for funding, policy review and mass sensitization of women and girls on SRHR and protection

19. International Community of Women Living with HIV & AIDS Eastern Africa Acknowledgement STOP AIDS NOW through LINK UP PROGRAMME Auxiliary Research Consulting Team from the Gender And Social Accountability Consulting Group (GESAP) Limited National Steering Committee (NSC) International Technical Working Group Study participants Research Assistants Peer Reviewers – Uganda National Academy of Sciences Editors ICWEA team