WE-ACTxWE-ACTxWomen’s Equity in Access to Care and Women’s Equity in Access to Care and

TreatmentTreatment

All Photographs by Jon WallenAll Photographs by Jon Wallenfor WE-ACTxfor WE-ACTx

copyright 2006copyright 2006

Rwanda LandscapeRwanda Landscape

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

WE-ACTx Clients Greeting Visitors,WE-ACTx Clients Greeting Visitors,Icyuzuzo Clinic, Greater KigaliIcyuzuzo Clinic, Greater Kigali

Pharmacist at Icyuzuzo Clinic with HIV/ARV Pharmacist at Icyuzuzo Clinic with HIV/ARV patientspatients

WE-ACTx Rwanda Women’s Treatment Access WE-ACTx Rwanda Women’s Treatment Access Initiative (RWTAI) , a “public-private” partnership Initiative (RWTAI) , a “public-private” partnership

efforteffort

Women’s Equity in Access to Care and Women’s Equity in Access to Care and Treatment for HIVTreatment for HIV

Partnered with Rwandan government Partnered with Rwandan government treatment program (TRAC) and 24 Rwandan treatment program (TRAC) and 24 Rwandan survivors NGOssurvivors NGOs

Created in mid-2004 in response to request Created in mid-2004 in response to request from Survivor NGOsfrom Survivor NGOs

Grass-roots model- we train nurses in HIV Grass-roots model- we train nurses in HIV care, provided onsite in NGOs with MD care, provided onsite in NGOs with MD supervisionsupervision

Funded by Multiple small grantsFunded by Multiple small grants 4 clinics currently in operation or 4 clinics currently in operation or

developmentdevelopment

Goals of WE-ACTx Treatment ProgramGoals of WE-ACTx Treatment Program

• Provide high quality comprehensive HIV Provide high quality comprehensive HIV specific care to as many people as need itspecific care to as many people as need it

• Provide family centered diagnosis of HIV Provide family centered diagnosis of HIV infection (VCT)infection (VCT)

• Leverage technology to optimize careLeverage technology to optimize care• Capacity building in Rwanda--transfer Capacity building in Rwanda--transfer

skill set to ensure sustainabilityskill set to ensure sustainability• Leverage HIV programs to additional gain Leverage HIV programs to additional gain

to public health systems to public health systems

WE-ACTx RwandaWE-ACTx Rwanda WE-ACTx runs a comprehensive HIV program in WE-ACTx runs a comprehensive HIV program in

RwandaRwanda Main headquarters are in KigaliMain headquarters are in Kigali Rwandan staff of 60 oversee multiple, overlapping Rwandan staff of 60 oversee multiple, overlapping

clinical and non-clinical programs.clinical and non-clinical programs. Strong focus on nutrition and real-world needs of Strong focus on nutrition and real-world needs of

ARV patients to adhere to HIV treatment programs ARV patients to adhere to HIV treatment programs long-termlong-term

WE-ACTx offers technical assistance, training, direct WE-ACTx offers technical assistance, training, direct medical care, other programs with focus on medical care, other programs with focus on integrative approachintegrative approach

Program aims to address common barriers in Program aims to address common barriers in accessing health services for women including accessing health services for women including poverty, hunger, trauma, issues related to multiple poverty, hunger, trauma, issues related to multiple stigmas of genocide, rape and HIV.stigmas of genocide, rape and HIV.

WE-ACTx Clinical ProgramsWE-ACTx Clinical ProgramsMay 2006May 2006

Medical Care for HIV infectionMedical Care for HIV infection– Initiated July 2004, now add 50-100 patients/wkInitiated July 2004, now add 50-100 patients/wk– ~6000 patients in care in 3 clinics~6000 patients in care in 3 clinics– ~All needing ART have received it for free~All needing ART have received it for free– Program promotes “Family-Centered” careProgram promotes “Family-Centered” care

VCTVCT– initiated Sept 20, 2005 via mobile, fixed ‘family’ VCTinitiated Sept 20, 2005 via mobile, fixed ‘family’ VCT– Current volume 1300+/month Current volume 1300+/month

Development of country-wide program for Development of country-wide program for cervical cancer screening and preventioncervical cancer screening and prevention

New “Family Program” integrating pediatric care New “Family Program” integrating pediatric care and needs of orphans, adolescents, children on and needs of orphans, adolescents, children on ARVsARVs

Future ClinicsFuture Clinics

Currently partnering with Government to upgrade Currently partnering with Government to upgrade public health sites (Centres de Santés) to provide public health sites (Centres de Santés) to provide comprehensive HIV-related carecomprehensive HIV-related care

Will use HIV money to upgrade entire centresWill use HIV money to upgrade entire centres– Ambulatory facilitiesAmbulatory facilities– LaboratoriesLaboratories– MaternityMaternity– TuberculosisTuberculosis– In-patientIn-patient

Maximum patient volume <1500/clinic?Maximum patient volume <1500/clinic? In WE-ACTx clinics, optimal volume ~3500 ptsIn WE-ACTx clinics, optimal volume ~3500 pts Will try to enroll HIV clients into partner NGOsWill try to enroll HIV clients into partner NGOs

WE-ACTx non-Clinical Service InitiativesWE-ACTx non-Clinical Service Initiatives

Food Supplements; goal of sustainable Food Supplements; goal of sustainable food source for ART clientsfood source for ART clients

Income generation Programs (Sewing, Income generation Programs (Sewing, Crafts, Poultry, Small Agriculture)Crafts, Poultry, Small Agriculture)

Community-based Peer Training and Community-based Peer Training and Education Program (HIV and basics of Education Program (HIV and basics of health) for low-literacy populationshealth) for low-literacy populations

Support of school fees for childrenSupport of school fees for children Community legal advocacy training – Community legal advocacy training –

gender violence /HIV rights focus.gender violence /HIV rights focus.

Goals of WE-ACTx Research programsGoals of WE-ACTx Research programs

Research Capacity building in Research Capacity building in RwandaRwanda Research methods and staff trainingResearch methods and staff training Laboratory and specimen repositoriesLaboratory and specimen repositories Data management and statistical analysisData management and statistical analysis PublicationPublication

Informing Clinical care in AfricaInforming Clinical care in Africa Effectiveness and Toxicity of ARV Effectiveness and Toxicity of ARV

treatmenttreatment Effect of nutritional statusEffect of nutritional status Influence of comorbidities, esp Malaria Influence of comorbidities, esp Malaria

and TBand TB Assessing impact of sequelae of violenceAssessing impact of sequelae of violence

Clinical Parameters in WE-ACTxClinical Parameters in WE-ACTxAdults (Jan 2006)Adults (Jan 2006)

CD4 countsCD4 counts %%

<200<200 24.324.3

200-350200-350 24.924.9

<350<350 50.850.8

MedianMedian 415 cells/µl415 cells/µl

Age-meanAge-mean 31.631.6

BMI-meanBMI-mean 21.421.4

Clinical Stage-Adults (Jan 2006)Clinical Stage-Adults (Jan 2006)

Stage IStage I 24.5%24.5%

Stage IIStage II 32.0%32.0%

Stage IIIStage III 32.8%32.8%

Stage IVStage IV 1.4%1.4%

UndeterminedUndetermined 9.2%9.2%

Process of CareProcess of Care

Day 1--full eval with CD4; entered into databaseDay 1--full eval with CD4; entered into database Day 3-CD4 results to patient-if needs ARVsDay 3-CD4 results to patient-if needs ARVs

– Schedule for 3 day education sessions, with a Schedule for 3 day education sessions, with a buddy attends session. buddy attends session.

– Prepare to present to Selection CommitteePrepare to present to Selection Committee By Day 7-10 ARVs prescribedBy Day 7-10 ARVs prescribed Follow up visit at 2, 6 wks, CD4 at 6 monthsFollow up visit at 2, 6 wks, CD4 at 6 months Patient monitored by NGO, and some are in support Patient monitored by NGO, and some are in support

groups; WE-ACTx pays one NGO nursegroups; WE-ACTx pays one NGO nurse Appointments provided and no-shows followed upAppointments provided and no-shows followed up

Critical Role of NGOsCritical Role of NGOs Uses an existing infrastructure that patient trustsUses an existing infrastructure that patient trusts Provide an already identified source of at-risk Provide an already identified source of at-risk

individualsindividuals Provide support to come into VCT and careProvide support to come into VCT and care Ensure follow-upEnsure follow-up Assist substantially in outcome ascertainment: death, Assist substantially in outcome ascertainment: death,

hospitalization, illnesshospitalization, illness

RWISA, aka WISE-RwandaRWISA, aka WISE-Rwanda

Prospective observational cohort studyProspective observational cohort study HIV infected and uninfected Rwandan women, goal 50% HIV infected and uninfected Rwandan women, goal 50%

survivors of genocidal rape (measured as continuous variable)survivors of genocidal rape (measured as continuous variable) Assessing the effectiveness and toxicity of antiretroviral Assessing the effectiveness and toxicity of antiretroviral

therapy therapy Assessing influence of comorbiditiesAssessing influence of comorbidities Many nested studies (virology, immunology, interaction of HLA Many nested studies (virology, immunology, interaction of HLA

type with viral evolution, etc.)type with viral evolution, etc.) Funded in September 2004 with NIH supplementFunded in September 2004 with NIH supplement

Overview of RWISA areas of investigationOverview of RWISA areas of investigation

Effectiveness and toxicity of HAART (of generic FDCs) in Effectiveness and toxicity of HAART (of generic FDCs) in Rwandan women Rwandan women

Viral evolution, dual infection, recombinationViral evolution, dual infection, recombination Immunologic correlates of PTSD and depressionImmunologic correlates of PTSD and depression Co-morbidities – TB, malariaCo-morbidities – TB, malaria Effect of Nutrition on disease progression and response to Effect of Nutrition on disease progression and response to

therapytherapy Impact of PTSD, depression and sequelae of violence on Impact of PTSD, depression and sequelae of violence on

adherence and effectiveness of HAARTadherence and effectiveness of HAART HAART Adherence and viral resistance HAART Adherence and viral resistance Prevalence and incidence of cervical dysplasia and HPVPrevalence and incidence of cervical dysplasia and HPV

Actual Cohort Composition (As of Jan 2006)Actual Cohort Composition (As of Jan 2006)

989 participants989 participants– 515 HIV infected women enrolled 515 HIV infected women enrolled just prior to just prior to

initiating ARVsinitiating ARVs– 251 HIV infected women NOT initiating ARVs 251 HIV infected women NOT initiating ARVs

with CD4 200-500 cells/µl (55 with actual with CD4 200-500 cells/µl (55 with actual CD4>500)CD4>500)

– 218 HIV negative women218 HIV negative women ~50% of each group are women who ~50% of each group are women who

survived genocidal rape--meets target in survived genocidal rape--meets target in all subgroupsall subgroups

Newer ProgramsNewer Programs

Community Peer Education and Training (2006):Community Peer Education and Training (2006): A Partnership Effort with Govt, NGOsA Partnership Effort with Govt, NGOs Includes “Train the Trainer” WorkshopsIncludes “Train the Trainer” Workshops Goal Is Training a corps of Community Peer Goal Is Training a corps of Community Peer

Educators to deliver “A Healthy Life with HIV” Educators to deliver “A Healthy Life with HIV” curriculum aimed at low-literacy clientscurriculum aimed at low-literacy clients

Recruitment of HIV-positive clients and other Recruitment of HIV-positive clients and other community memberscommunity members

Approach to empower, support HIV-positive Approach to empower, support HIV-positive leadership, role models, outreach in local leadership, role models, outreach in local community and in Rwandacommunity and in Rwanda

Modules include focus on gender violence, trauma, Modules include focus on gender violence, trauma, etc.etc.

Tubeho (“To Live Again”) Joint Oral History Tubeho (“To Live Again”) Joint Oral History Documentary project with Survivors Fund Documentary project with Survivors Fund

(SURF)(SURF) Launch of the Tubeho Project, a documentary oral history project Launch of the Tubeho Project, a documentary oral history project

and traveling exhibit about Rwandan women’s genocide and rape and traveling exhibit about Rwandan women’s genocide and rape survivors experiences and link to HIV.survivors experiences and link to HIV.

Joint venture with UK- and Rwanda-based Survivors FundJoint venture with UK- and Rwanda-based Survivors Fund Pilot Exhibit of testimonies and portraits of 30 Rwandan genocidal Pilot Exhibit of testimonies and portraits of 30 Rwandan genocidal

rape survivors and Rwanda “Life Today” documentary photographs rape survivors and Rwanda “Life Today” documentary photographs by Jon Wallen (opened in San Francisco in March 2006.) by Jon Wallen (opened in San Francisco in March 2006.)

Tubeho traveling exhibit planned for several US cities and Canada Tubeho traveling exhibit planned for several US cities and Canada in 2006.in 2006.

Issues include Examination of Link of Gender-based Violence (GBV) Issues include Examination of Link of Gender-based Violence (GBV) and HIV, and Rape and HIV as Weapons of Warand HIV, and Rape and HIV as Weapons of War

Exhibit has public educational goal of preventing GBV and genocide, Exhibit has public educational goal of preventing GBV and genocide, and offering lessons Rwanda can offer the world, and regions like and offering lessons Rwanda can offer the world, and regions like Darfur, Sudan where genocidal sexual violence is being directed Darfur, Sudan where genocidal sexual violence is being directed against women and children.against women and children.

WE-ACTx initiated legal aid training workshop for NGOs and WE-ACTx initiated legal aid training workshop for NGOs and clients of partners, in response to request by clients, in clients of partners, in response to request by clients, in summer 2006.summer 2006.

www.we-actx.orgwww.we-actx.org

For more information, visit our website, or For more information, visit our website, or contact WE-ACTx staff in US or Rwanda: contact WE-ACTx staff in US or Rwanda:

Executive Co-Directors, Anne-christine Executive Co-Directors, Anne-christine d’Adesky d’Adesky weactx@gmail.com or Dr. or Dr. Kathryn Anastos Kathryn Anastos kanastos@verizon.net

Medical Director Dr. Mardge Cohen Medical Director Dr. Mardge Cohen mardgecohen@aol.com

Rwanda Country Director: Simon Ntare Rwanda Country Director: Simon Ntare ntare_s@yahoo.co.ukntare_s@yahoo.co.uk