Challenges to identifying HIV-exposed infants,
scaling up early infant diagnosis & linkage to
prophylaxis, treatment and care programs
Charles Kiyaga
National EID Coordinator
Ministry of Health – Uganda
ckiyaga@gmail.com
Following infants throughout entire EID process
highlights key challenges in the entire EID Cascade
1
2
3
4
2
Different factors contribute to the Challenges in the
EID process
1
2
Identify and test
exposed infant
Potential causes of loss
• HCWs not sensitized
to identify exposed
infants
• Weak system for
referral for DBS testing
from on-site capture
points
•No system for referral
of PMTCT mothers to
EID testing
• No system for
capturing babies
outside the HF
Provide results &
guide through test
algorithm
• Ineffective clinic flow
& limited HR capacity
3
Enroll
positives
in ART Clinic
• Poor system for
referral of positive
infants to ART clinics
•Poor documentation
and tracking systems
• Inconsistent
counseling
•Limited integration of
infant care into visits
• Long result
turnaround times
•Limited integration
between EID and
ART Clinic teams
4
Retain alive
in care/
treatment
• Limited integration of
infant care into testing
process, leading to
attrition
• Not initiating infants on
ART when eligible
• Not identifying exposed
infants before 3 months
of age
Given the rapid disease progression of HIV in infants, basic care and
prophylaxis must be provided to infants throughout the EID process
3
EID review revealed that only 40% (98 of 244) of tested
infants were eventually enrolled into care & treatment
Infant Retention Continuum at 3 Regional Referral Hospitals
Sept 2007 – Feb 2009
39% of positive
infants never
received results
35% of positive
infants receiving
results were never
enrolled into care
42% of positive
infants in care &
treatment were lost
4
Drivers of Loss: Not capturing exposed infants
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2
3
4
• Limited sensitization and awareness among HCWs
 Healthcare workers not proactively identifying and
referring exposed infants
Exposed infants
never tested
• Lack of a formal referral system for EID testing from
‘entry points’ within health facility and off facility
 Exposed infants referred from different wards/clinics
for on-site DBS testing are not reaching the testing point
Lack of referral or sample collection from the
community (immunization outreaches)
• Lack of referral system for exposed infants identified
before or at birth
 HIV+ pregnant women identified at ANC or maternity
not bringing infants for DBS testing at 6 weeks
5
Referral from PMTCT: Data from one hospital revealed that
over 80% of HIV+ pregnant women never brought their
babies back for testing and care after delivery
Linkage between PMTCT and EID
Hospital, Jan – Dec 2008
Less than 20% of PMTCT
mothers could be linked
to tested infants
Strong, formalized PMTCT-EID linkages are needed to capture exposed infants before birth
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Drivers of Loss: Exposed infants not receiving results
and completing testing algorithm
1
2
3
4
• Sub-optimal clinic flow with multiple follow-up points
 Caregivers unclear where to return for results
 EID services with insufficient space and staffing
39% of positive
infants never
receive results
• Poor documentation and tracking systems
 Key information not kept in single comprehensive
longitudinal register— one must sift through many
registers and charts
 Lack of an appointment system to trigger follow-up
• Lack of consistent counseling and care provision
 Weak counseling on importance of test results, testing
algorithm, and the need for regular care
 Lack of care provision undermines importance of
infants returning regularly
• Long sample and result turnaround times
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Clinic Systems: At Namayumba Health Center IV there
was no centralized follow-up and care point
Legend
Patients
Results
Samples
Impact of Centralizing EID
Services only in the Lab
Courier from
Wakiso Town
Test Results
Posta Uganda
DBS Samples
JCRC Lab
(Kampala)
Posta Uganda
Courier to
Wakiso Town
 Caregivers of infants tested at the
lab in OPD receive no counseling or
sensitization during sample collection
Laboratory in OPD
ANC/PMTCT
ART Clinic
OPD
Immunization
Lower Level
HCs
Immunization
Outreaches
 Caregivers of infants tested at ANC
or ART Clinic do not know where to
return for results and follow-up
 With all results given in the lab,
there is no post-result counseling or
care unless caregiver takes initiative
to seek it out
 No set appt for 2nd PCR
 No formal referral to ART Clinic
if positive
Turnaround Time: Long sample and result turnaround time had an
adverse effect on whether caregivers receive results or not
Average Time between DBS Collection and Caregiver Receiving Results
Jinja RRH, Jan 2008 – Feb 2009
Sample
Drawn
Dispatched
to JCRC
Arrives at
JCRC
Sample
Tested
Result sent
from JCRC
Caregiver
Receives
Results
Result arrives
at Facility
4 Days
4 Days
30 Days
31 Days
Average
Average
Average
Average
(n= 333)
(n= 203)
(n= 222)
(n= 194)
On average, caregivers had to wait 69 days to received DBS results
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Turnaround Time & Retention: Fewer caregivers receive their
results with longer turnaround times, but even in best case
percent returning remained low
Percent of Caregivers Receiving Results vs. Turnaround Time
Jinja RRH, Jan 2008 - Feb 2009
70%
60%
59%
52%
50%
40%
36%
38%
51-70 Days
Over 70 Days
30%
20%
10%
0%
10-30 Days
31-50 Days
# Days between Sample Collection and Result Arrival at Site
Drivers of Loss: HIV-positive infants not being
enrolled into care and treatment
1
2
3
• No formal referral system to ART clinics
 Infants referred from EID testing point to ART Clinic
are only told to go verbally with no tracking by either
EID or ART units
4
35% of pos infants
receiving results were
never enrolled
• Limited integration or communication between EID
testing and ART clinic
 No meetings between EID & ART teams to follow-up
referred infants
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Drivers of Loss: HIV-positive infants not initiated &
retained in care after enrollment at ART Clinic
1
2
3
• Not immediately initiating eligible infants on ART
 Only 45% of eligible HIV+ infants initiated on ART!
 Some HCWs not aware of current EIT Policy, and
others are reluctant to initiate infants immediately —
failure to initiate ART decreases odds of survival
4
42% of positive infants
in care & treatment
were lost
• Late identification and testing of exposed infants
 40% of infants tested over 6 months of age, so
health likely to have already deteriorated
• Failure to provide specialized care for exposed
infants before results return
 Many exposed infants receive specialized care only
once confirmed positive
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Age and Attrition: 59% of infants were captured at
greater than 3 months of age
16-18 Months (7%)
13-15 Months (11%)
10-12 Months (10%)
7-9 Months (13%)
4-6 Months (18%)
Health Facility
Average Age
at 1st DBS
Masaka RRH
6.3 months
Jinja RRH
7.6 months
Lira RRH
6.2 months
Overall Average
6.8 months
0-3 Months (41%)
Capture and diagnosis of infants at a late age can lead to attrition after initiation
on treatment due to rapid disease progression
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Having seen the above challenges we undertook to
strengthen our EID system, with a package of 6
complementary interventions
1. Establish “EID Care Point” within either MCH or ART clinic where all
exposed infant care/follow-up is centralized
2.Integrate routine care into EID process & establish regular visit schedule
3. Strengthen & standardize counseling for caregivers of exposed infants
4. Improve tracking tools to centralize data & follow infants longitudinally
5. Establish referral system for DBS testing and follow-up at EID care point
6. Establish referral system for care/treatment at the ART clinic
This was piloted in 21 Health facilities of all levels in 8 districts
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Assessment of the pilot at several facilities showed
high impact across all key areas of EID:
Testing
• DBS testing volumes increased by 40%
• Average age at testing reduced by 50%
Cotrim
• CTX initiation increased every month after
implementation, from 80% to 99%
Retention
• Percent of exposed infants receiving results
increased from 50% to 70%
ART Linkage
• Percent of HIV+ infants linked to the ART clinic
increased from 50% to 97%
EID program has also implemented other high-impact innovations:
Integrated EID into immunization outreaches
Consolidated 8 testing labs into 1 National Lab
Set up new national hubbed transport network
Increases access
and identification
Reduces sampleresult TAT
Challenges exist , but “EID system strengthening” model has
demonstrated high impact & shown feasibility of implementation
The strengthening model has shown the value and
feasibility of changing EID from merely a testing
service to a longitudinal comprehensive care package
for all HIV-exposed infants
Acknowledgements
 CDC Uganda for their financial
and program support. They also
supported my coming here
 CHAI for their technical and
logistical support
 JCRC for doing most of the lab
testing
 PEPFAR for their financial support
 UNICEF for their financial support