1. WE-ACTx Women’s Equity in Access to Care and Treatment

2. All Photographs by Jon Wallen for WE-ACTx copyright 2006

3. Rwanda Landscape

4. Waiting Room for Patients, Icyzuzo WE-ACTx clinic, Greater Kigali

5. WE-ACTx Clients Greeting Visitors, Icyuzuzo Clinic, Greater Kigali

6. Pharmacist at Icyuzuzo Clinic with HIV/ARV patients

7. WE-ACTx Rwanda Women’s Treatment Access Initiative (RWTAI), a “public-private” partnership effort Women’s Equity in Access to Care and Treatment for HIV Women’s Equity in Access to Care and Treatment for HIV Partnered with Rwandan government treatment program (TRAC) and 24 Rwandan survivors NGOs Partnered with Rwandan government treatment program (TRAC) and 24 Rwandan survivors NGOs Created in mid-2004 in response to request from Survivor NGOs Created in mid-2004 in response to request from Survivor NGOs Grass-roots model- we train nurses in HIV care, provided onsite in NGOs with MD supervision Grass-roots model- we train nurses in HIV care, provided onsite in NGOs with MD supervision Funded by Multiple small grants Funded by Multiple small grants 4 clinics currently in operation or development 4 clinics currently in operation or development

8. Goals of WE-ACTx Treatment Program Provide high quality comprehensive HIV specific care to as many people as need it Provide high quality comprehensive HIV specific care to as many people as need it Provide family centered diagnosis of HIV infection (VCT) Provide family centered diagnosis of HIV infection (VCT) Leverage technology to optimize care Leverage technology to optimize care Capacity building in Rwanda--transfer skill set to ensure sustainability Capacity building in Rwanda--transfer skill set to ensure sustainability Leverage HIV programs to additional gain to public health systems Leverage HIV programs to additional gain to public health systems

9. WE-ACTx Rwanda WE-ACTx runs a comprehensive HIV program in Rwanda WE-ACTx runs a comprehensive HIV program in Rwanda Main headquarters are in Kigali Main headquarters are in Kigali Rwandan staff of 60 oversee multiple, overlapping clinical and non-clinical programs. Rwandan staff of 60 oversee multiple, overlapping clinical and non-clinical programs. Strong focus on nutrition and real-world needs of ARV patients to adhere to HIV treatment programs long-term Strong focus on nutrition and real-world needs of ARV patients to adhere to HIV treatment programs long-term WE-ACTx offers technical assistance, training, direct medical care, other programs with focus on integrative approach WE-ACTx offers technical assistance, training, direct medical care, other programs with focus on integrative approach Program aims to address common barriers in accessing health services for women including poverty, hunger, trauma, issues related to multiple stigmas of genocide, rape and HIV. Program aims to address common barriers in accessing health services for women including poverty, hunger, trauma, issues related to multiple stigmas of genocide, rape and HIV.

10. WE-ACTx Clinical Programs May 2006 Medical Care for HIV infection Medical Care for HIV infection –Initiated July 2004, now add 50-100 patients/wk –~6000 patients in care in 3 clinics –~All needing ART have received it for free –Program promotes “Family-Centered” care VCT VCT –initiated Sept 20, 2005 via mobile, fixed ‘family’ VCT –Current volume 1300+/month Development of country-wide program for cervical cancer screening and prevention Development of country-wide program for cervical cancer screening and prevention New “Family Program” integrating pediatric care and needs of orphans, adolescents, children on ARVs New “Family Program” integrating pediatric care and needs of orphans, adolescents, children on ARVs

11. Future Clinics Currently partnering with Government to upgrade public health sites (Centres de Santés) to provide comprehensive HIV-related care Currently partnering with Government to upgrade public health sites (Centres de Santés) to provide comprehensive HIV-related care Will use HIV money to upgrade entire centres Will use HIV money to upgrade entire centres –Ambulatory facilities –Laboratories –Maternity –Tuberculosis –In-patient Maximum patient volume <1500/clinic? Maximum patient volume <1500/clinic? In WE-ACTx clinics, optimal volume ~3500 pts In WE-ACTx clinics, optimal volume ~3500 pts Will try to enroll HIV clients into partner NGOs Will try to enroll HIV clients into partner NGOs

12. WE-ACTx non-Clinical Service Initiatives Food Supplements; goal of sustainable food source for ART clients Food Supplements; goal of sustainable food source for ART clients Income generation Programs (Sewing, Crafts, Poultry, Small Agriculture) Income generation Programs (Sewing, Crafts, Poultry, Small Agriculture) Community-based Peer Training and Education Program (HIV and basics of health) for low-literacy populations Community-based Peer Training and Education Program (HIV and basics of health) for low-literacy populations Support of school fees for children Support of school fees for children Community legal advocacy training – gender violence /HIV rights focus. Community legal advocacy training – gender violence /HIV rights focus.

13. Goals of WE-ACTx Research programs  Research Capacity building in Rwanda  Research methods and staff training  Laboratory and specimen repositories  Data management and statistical analysis  Publication  Informing Clinical care in Africa  Effectiveness and Toxicity of ARV treatment  Effect of nutritional status  Influence of comorbidities, esp Malaria and TB  Assessing impact of sequelae of violence

14. Clinical Parameters in WE-ACTx Adults (Jan 2006) CD4 counts % <20024.3 200-35024.9 <35050.8 Median 415 cells/µl Age-mean31.6 BMI-mean21.4

15. Clinical Stage-Adults (Jan 2006) Stage I 24.5% Stage II 32.0% Stage III 32.8% Stage IV 1.4% Undetermined9.2%

16. Process of Care Day 1--full eval with CD4; entered into database Day 1--full eval with CD4; entered into database Day 3-CD4 results to patient-if needs ARVs Day 3-CD4 results to patient-if needs ARVs –Schedule for 3 day education sessions, with a buddy attends session. –Prepare to present to Selection Committee By Day 7-10 ARVs prescribed By Day 7-10 ARVs prescribed Follow up visit at 2, 6 wks, CD4 at 6 months Follow up visit at 2, 6 wks, CD4 at 6 months Patient monitored by NGO, and some are in support groups; WE-ACTx pays one NGO nurse Patient monitored by NGO, and some are in support groups; WE-ACTx pays one NGO nurse Appointments provided and no-shows followed up Appointments provided and no-shows followed up

17. Critical Role of NGOs Uses an existing infrastructure that patient trusts Uses an existing infrastructure that patient trusts Provide an already identified source of at-risk individuals Provide an already identified source of at-risk individuals Provide support to come into VCT and care Provide support to come into VCT and care Ensure follow-up Ensure follow-up Assist substantially in outcome ascertainment: death, hospitalization, illness Assist substantially in outcome ascertainment: death, hospitalization, illness

18. RWISA, aka WISE-Rwanda Prospective observational cohort study Prospective observational cohort study HIV infected and uninfected Rwandan women, goal 50% survivors of genocidal rape (measured as continuous variable) HIV infected and uninfected Rwandan women, goal 50% survivors of genocidal rape (measured as continuous variable) Assessing the effectiveness and toxicity of antiretroviral therapy Assessing the effectiveness and toxicity of antiretroviral therapy Assessing influence of comorbidities Assessing influence of comorbidities Many nested studies (virology, immunology, interaction of HLA type with viral evolution, etc.) Many nested studies (virology, immunology, interaction of HLA type with viral evolution, etc.) Funded in September 2004 with NIH supplement Funded in September 2004 with NIH supplement

19. Overview of RWISA areas of investigation  Effectiveness and toxicity of HAART (of generic FDCs) in Rwandan women  Viral evolution, dual infection, recombination  Immunologic correlates of PTSD and depression  Co-morbidities – TB, malaria  Effect of Nutrition on disease progression and response to therapy  Impact of PTSD, depression and sequelae of violence on adherence and effectiveness of HAART  HAART Adherence and viral resistance  Prevalence and incidence of cervical dysplasia and HPV

20. Actual Cohort Composition (As of Jan 2006) 989 participants 989 participants –515 HIV infected women enrolled just prior to initiating ARVs –251 HIV infected women NOT initiating ARVs with CD4 200-500 cells/µl (55 with actual CD4>500) –218 HIV negative women ~50% of each group are women who survived genocidal rape--meets target in all subgroups ~50% of each group are women who survived genocidal rape--meets target in all subgroups

21. Newer Programs Community Peer Education and Training (2006): Community Peer Education and Training (2006): A Partnership Effort with Govt, NGOs A Partnership Effort with Govt, NGOs Includes “Train the Trainer” Workshops Includes “Train the Trainer” Workshops Goal Is Training a corps of Community Peer Educators to deliver “A Healthy Life with HIV” curriculum aimed at low-literacy clients Goal Is Training a corps of Community Peer Educators to deliver “A Healthy Life with HIV” curriculum aimed at low-literacy clients Recruitment of HIV-positive clients and other community members Recruitment of HIV-positive clients and other community members Approach to empower, support HIV-positive leadership, role models, outreach in local community and in Rwanda Approach to empower, support HIV-positive leadership, role models, outreach in local community and in Rwanda Modules include focus on gender violence, trauma, etc. Modules include focus on gender violence, trauma, etc.

22. Tubeho (“To Live Again”) Joint Oral History Documentary project with Survivors Fund (SURF) Launch of the Tubeho Project, a documentary oral history project and traveling exhibit about Rwandan women’s genocide and rape survivors experiences and link to HIV. Launch of the Tubeho Project, a documentary oral history project and traveling exhibit about Rwandan women’s genocide and rape survivors experiences and link to HIV. Joint venture with UK- and Rwanda-based Survivors Fund Joint venture with UK- and Rwanda-based Survivors Fund Pilot Exhibit of testimonies and portraits of 30 Rwandan genocidal rape survivors and Rwanda “Life Today” documentary photographs by Jon Wallen (opened in San Francisco in March 2006.) Pilot Exhibit of testimonies and portraits of 30 Rwandan genocidal rape survivors and Rwanda “Life Today” documentary photographs by Jon Wallen (opened in San Francisco in March 2006.) Tubeho traveling exhibit planned for several US cities and Canada in 2006. Tubeho traveling exhibit planned for several US cities and Canada in 2006. Issues include Examination of Link of Gender-based Violence (GBV) and HIV, and Rape and HIV as Weapons of War Issues include Examination of Link of Gender-based Violence (GBV) and HIV, and Rape and HIV as Weapons of War Exhibit has public educational goal of preventing GBV and genocide, and offering lessons Rwanda can offer the world, and regions like Darfur, Sudan where genocidal sexual violence is being directed against women and children. Exhibit has public educational goal of preventing GBV and genocide, and offering lessons Rwanda can offer the world, and regions like Darfur, Sudan where genocidal sexual violence is being directed against women and children. WE-ACTx initiated legal aid training workshop for NGOs and clients of partners, in response to request by clients, in summer 2006. WE-ACTx initiated legal aid training workshop for NGOs and clients of partners, in response to request by clients, in summer 2006.

23. www.we-actx.org For more information, visit our website, or contact WE-ACTx staff in US or Rwanda: For more information, visit our website, or contact WE-ACTx staff in US or Rwanda: Executive Co-Directors, Anne-christine d’Adesky weactx@gmail.com or Dr. Kathryn Anastos kanastos@verizon.net Executive Co-Directors, Anne-christine d’Adesky weactx@gmail.com or Dr. Kathryn Anastos kanastos@verizon.net weactx@gmail.com kanastos@verizon.net weactx@gmail.com kanastos@verizon.net Medical Director Dr. Mardge Cohen mardgecohen@aol.com Medical Director Dr. Mardge Cohen mardgecohen@aol.com mardgecohen@aol.com Rwanda Country Director: Simon Ntare ntare_s@yahoo.co.uk Rwanda Country Director: Simon Ntare ntare_s@yahoo.co.uk