1) The Balasahyoga project in India used a Family Case Management approach to minimize loss to follow up of children and adults infected with HIV across the HIV testing and treatment cascade. 2) Key aspects of the approach included family counseling, home visits, referrals to treatment facilities, tracking individuals across services, and data sharing between community and health facilities. 3) The approach significantly increased the number of children and adults registered for HIV testing and treatment, tested, initiated on antiretroviral therapy, and retained in care, demonstrating its effectiveness in improving access and continuity of HIV services.

1. Use of Family Case Management Approach to Track Children
infected with HIV across HIV Cascade – Balasahyoga
experience, India
S. Balaraju
Director, NATURE

2. Context
India
• Low HIV prevalence; concentrated epidemic setting
• 0.34% HIV prevalence with an estimated 2.31m
PLHIV (HSS 2007)
• 3.5% of PLHIV (80,000) constitute the age-group <15
years (HSS 2007)
• 0.49% prevalence among ANC attendees (NACO, 200910)
Andhra Pradesh
•
•
•
•
•
•
One of the 6 high HIV prevalence states (2nd highest
after Manipur)
0.5 million PLHIV (HSS 2007) constituting 22% of HIV
burden of India
1.22% prevalence among ANC attendees (pregnant
women)
150,000 affected children (Program Data)
Low awareness levels on HIV / AIDS among general
population (13.7% women and 32% men – NFHS-3)
All districts in the state categorized as “high
prevalent” districts with ANC prevalence of >1%

3. Issues
•
Issues affecting access to care and support for HIV affected children
– HIV care focused on adults with Pre ART introduced in 2006 and early infant
diagnosis (EID) as late as 2010
– Facilities do not treat ‘Family’ as a unit resulting in low identification of
infected children and partners
– Low knowledge on existing HIV care, treatment and support services among
families
– Absence of continuum-of-care approach and lack of follow-up resulting in high
drop-out from care and treatment services
– Delayed HIV testing and identification leading to high mortality rates among
children (Of the total children dead in Balsahyoga families, only 37% were
tested whereas 87% children had mothers who were HIV Positive) (BSY
Program data)

4. The Project - Balasahyoga
•
CIFF and EJAF funded; five-year project (2007-2012)
•
Largest and most comprehensive intervention for
children affected by HIV in the country
•
Saturated coverage in both rural and urban settings
He
al
th
Children
and
families
infected &
affected by
HIV/AIDS
Ed
uc
at
ion
Nu
et
Safety n
Psychosocial
on
iti
tr
To improve the
quality of life of
children and
their families
infected and
affected by
HIV/AIDS
–
•
Focuses on “Children” within a “Family” setting
–
–
–
•
Decreased morbidity among children and parents living
with HIV/AIDS
Decreased number of children orphaned by HIV/AIDS
Decreased number of children infected by HIV
–
•
keep parents alive and free from ill health for
children to thrive
educate parents infected by HIV on early HIV testing
of children and early initiation of treatment
Child-friendly messaging to support disclosure, HIV
testing and treatment adherence
Works at both community and facility levels
–
–
IMPACT: Decreased mortality of children living with HIV/AIDS
target to reach 68,000 children across 11 of the 23
districts of Andhra Pradesh
two-way referral system
community interventions focus on “demand
generation”
facility interventions focus on “improving access and
quality of HIV services”
Recognizes that needs of children go beyond health minimum package of services defined across five
domains

5. The Approach
•
Family Case Management
–
–
–
–
•
FCM on a home visit
Data sharing
–
–
HIV testing prioritization tool
for children
>600 FCM and Community Volunteers
hired and trained constituting FCM teams
Each FCM team assigned 100-125
households for regular home visits
Family case files created for every
registered family to monitor services
Prioritized regular home visits, referrals
and linkages
MoU signed with NACO early identification
Second consent form introduced for
addressing confidentiality
•
Prioritization tools for HIV testing and
•
Facility strengthening
treatment
–
–
–
–
–
–
Child-play area created at
the ART center
Growth monitoring at the ART center
•
Refurbishment – patient flow
management, child play
Data entry and cleaning
Child counseling
Growth monitoring and nutrition
supplementation
LFU tracking
Strengthening Supply Chain
Key stakeholder participation
–
Local government engagement by various
departments

6. Minimizing Loss to Follow Up Using HIV Testing &
Treatment Cascade

7. Minimizing Loss to Follow Up Children (0-14 Years) Testing and Treatment Cascade
Four-fold > in
children registration
due to data sharing
with facilities and
visits to families
Ten-fold > eligible
children tested usage of
testing algorithm, home
visits and counseling to
overcome stigma
Four-fold > in
early
identification of
infected
children
43% > in
children
registered for
ART from 52%
to 95%
19 % > In
retention on
ART to 98%
from 79%

8. Minimizing Loss to Follow Up –
Adults Testing and Treatment Cascade
Four-fold in
registrations
80,000
74,958
70,000
4% > In
testing from
89% to 93%
67,280
67% > In
registration for
ART from 25% to
92% due to Home
Visits and follow up
with individual and
facilities
58,970
60,000
55,702
53,765
50,287
50,000
47,744
Year 1
41,380
38,964
38,568
40,000
35,737
33,076
28,780
30,000
Year 2
20% > in
retention
on ART
from 78%
to 98%
counselling
37,927
Year 3
Year 4
Year 5
25,592
21,627
20,000
20,158
19,846
18,260
15,829
14,083
11,830
10,558
10,000
9,151
17,935
15,288
8,770
7,370
2,314
3,757
1,388
14,967
8,245
3,269
1,081
0
Adults Registered
Eligible for Testing
Adults Tested
Adults Positive
Registered for ART
Ever on ART
Currently on ART

9. Lessons Learned
•
The HIV Testing and Treatment Algorithm was an useful tool for assessing eligibility of
children for HIV testing and treatment services.
•
Family Case Management Approach with individual and family counseling at home;
accompanied referrals to hospitals and tracking children across HIV testing and treatment
services was crucial.
•
Travel reimbursement for those who could not afford travel cost to HIV testing or ART
treatment facility.
•
Provision of supplementary nutrition at ART center was an added incentive for adherence to
ART treatment.
•
Data sharing arrangement was important strategy for minimizing loss to follow up (LFU) as
facility-based cases were tracked in communities through the FCM and Community
Volunteers.

10. Transition and Sustainability of Balasahyoga
- NATURE experience
•
•
•
•
•
•
•
•
Active Community Advisory Boards (CABs) and PLHIV Support Groups
Established Linkages with various Line Departments to continue support to
the PLHA’s Families / Children
Strengthen Integrated Child Protection Scheme (ICPS) and Juvenile Justice
Act / RTE Act, Structures - Child Welfare Committee, DLSA, District Child
Protection Unit (DCPU), linkage with Childline-1098, Orphan Homes, etc.
Strengthening of Civil Society Organization and District Level Child Rights
Networks
Children Club Federations / Consultations for Micro Level Advocacy
Providing Technical Assistance to Regional PLHIV Networks
Promotion and Strengthening of Community Level Peer Education for Drug
Adherence and Referral Services
Local Level integration with National Rural Health Mission (NRHM), DHS /
DAPCU and Integrated Child Development Scheme through Community
level Outreach Workers (ASHA, ANM and Anganwadi Worker)

11. Photogallery of BALASAHYOGA
Line Departments & Community Level Sensitization Meetings
Gatherings of Children groups

12. Thank You