Improving access to care and treatment services for children affected by HIV/AIDS in Andhra Pradesh, India Ajay Kumar Reddy Technical Manager – Monitoring & Evaluation Balasahayoga

Context India – 0.34% prevalence with an estimated 2.31 Million PLHIV (HSS 2007) – 3.5% of PLHIV (80,000) constitute the age-group <15 years (HSS 2007) – 0.49% prevalence among ANC attendees (Annual Report , NACO) – Low knowledge on HIV / AIDS among general population (17% women and 33% men – NFHS-3) – High prevalence in southern states (Andhra Pradesh, Maharashtra, Tamilnadu and Karnataka) and the North-East

Context Andhra Pradesh – 0.5 Million PLHIV (HSS 2007) constituting 22% of the HIV burden of the Country – 1.22% prevalence among ANC attendees (pregnant women) – 17,000 infected children (HSS 2007) and 150,000 affected children (Program Data) – Low awareness levels on HIV / AIDS among general population (13.7% women and 32% men – NFHS-3)

Issues Issues effecting access to care and treatment for HIV affected children – Prevention and Treatment focused on adults (Ped ART introduced in 2006 and Early Infant Diagnosis in 2010) – Facilities not treating ‘Family’ as a unit thereby resulting in low identification of infected Children and Partners – Low knowledge on existing HIV care, treatment and support services – Absence of Continuum of Care approach and lack of follow-up resulting in high drop-out from care and treatment services – Delayed testing and identification leading to high mortality rates. (Out of the total children dead, only 37% have been tested whereas 87% were with Mothers HIV Positive)

Balasahayoga – the program Objective: Improve the Quality of Life of Children through access to treatment, care and support services. Duration: 5 Year program supported by Children’s Investment Fund Foundation (CIFF) and Elton John AIDS Foundation and implemented by FHI, Clinton Foundation and CARE. Coverage: 68,000 children and their families affected by HIV/AIDS in 11 districts of Andhra Pradesh, India Interventions in domains of Health, Education, Nutrition, Psycho-social support and Safety Nets Works at Community and Facility levels to generate demand for services as well as improve response at facilities.

The Approach Family case management (FCMs) approach where FCMs (outreach workers) make home visits, provide care, counsel parents on available services and make accompanied referrals to facility-based services; Data sharing with Facilities to identify and minimize Loss-to-follow-up between services Develop and Use simple set of tools (algorithms, flip books, etc) for FCMs to screen for eligibility of VCT, ART and other key services Work with facilities to improve patient flow, availability of pediatric ART/OI medication, quality of care and child counseling Local Coordination Committees to ensure community level and key stakeholder participation and support Demonstrate and Advocate with Government to provide access to support services like safety-nets and livelihood promotion activities.

Algorithm used for identifying eligible children for HIV Test

FCM tools – Growth Monitoring, Disclosure, Neverapine Provision, etc

FCM Micro Plan Name of the FCM:G.K.Satyam Narayana Date Name of the village Activities to be Performed New Househ old Registr ation GM ART Adhr ence Educa tion Linkage s to Welfare scheme s Referrals (CD4, ART, testing, TB, etc.) Safety Net interventi ons Support Group Meetings TestCD4ARTTB 21 Jun Shareef Nagar Refer Data from ICTC , Jun Vasavinagar Jun Muzafar Nagar Jun 22 Jun Chintalamuni Nagar Jun Nirmal Nagar Jun Shareef Nagar Jun Shareef Nagar Jun Mahathamma nagar Jun Shareef Nagar

FCM Performance Summary Sheet (Testing & Treatment) Children Cascade (0- 14 years)Mar 2010 Registered282 Children ( years)224 Eligible for testing167 Tested95 Tested Positive17 Registered for ART13 Ever on ART5 Currently On ART5 Caregiver’s Cascade Mar 2010 Registered257 Eligible for testing216 Tested196 Tested Positive155 Registered for ART78 Ever on ART35 Currently On ART32

Lesson’s Learnt The continuum of care approach has resulted in significant improvements in access to services and retention in care – Identification and registration of 46,000 children and 48,000 adults (infected and affected) from 28,000 Families. – HIV testing rates among eligible children increased from 19% to 58%; – Enrollment in treatment services increased from 42% to 78% for children and 18% to 66% for adults; – Loss-to-follow up from ART treatment reduced to <2% among children and <5% among adults; – Improvement in Food Security Levels of Households through access to Safety Nets and Livelihood Enhancement Initiatives. – Overall retention of children in care is 93%, with 6.3% lost due to migration and 0.34% due to death.

Testing and Treatment Cascade for Children

Testing and Treatment Cascade for Caregivers

Access to PPTCTC services

Next Steps Partner with state and national government to adapt this continuum of care approach to other HIV affected areas of India. Successfully Pilot the Children Affected By AIDS (CABA) Scheme for scale-up in all the high-prevalence districts in the Country. Demonstrate a cost-effective and replicable model for adoption and scale-up by Government to other districts and states.