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

2 Following infants throughout entire EID process highlights key challenges in the entire EID Cascade Identify and test exposed infant Provide results & guide through test algorithm Enroll positives in ART Clinic Retain alive in care/ treatment 1234

3 Different factors contribute to the Challenges in the EID process Identify and test exposed infant Provide results & guide through test algorithm Enroll positives in ART Clinic Retain alive in care/ treatment 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 Ineffective clinic flow & limited HR capacity Poor documentation and tracking systems Inconsistent counseling Limited integration of infant care into visits Long result turnaround times Poor system for referral of positive infants to ART clinics Limited integration between EID and ART Clinic teams 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 Potential causes of loss Given the rapid disease progression of HIV in infants, basic care and prophylaxis must be provided to infants throughout the EID process

4 Infant Retention Continuum at 3 Regional Referral Hospitals Sept 2007 – Feb 2009 EID review revealed that only 40% (98 of 244) of tested infants were eventually enrolled into care & treatment 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

5 Drivers of Loss: Not capturing exposed infants Limited sensitization and awareness among HCWs  Healthcare workers not proactively identifying and referring exposed infants 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 Identify & test exposed infant Provide results & guide through test algorithm Enroll positives in ART Clinic Retain alive in care/ treatment Exposed infants never tested

6 Strong, formalized PMTCT-EID linkages are needed to capture exposed infants before birth 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

7 Drivers of Loss: Exposed infants not receiving results and completing testing algorithm Identify & test exposed infant Provide results & guide through test algorithm Enroll positives in ART Clinic Retain alive in care/ treatment 134 Sub-optimal clinic flow with multiple follow-up points  Caregivers unclear where to return for results  EID services with insufficient space and staffing 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 2 39% of positive infants never receive results

8 OPD JCRC Lab (Kampala) Laboratory in OPD ART Clinic Courier to Wakiso Town DBS Samples Test Results Posta Uganda Immunization ANC/PMTCT Lower Level HCs Immunization Outreaches Legend Patients Results Samples Clinic Systems: At Namayumba Health Center IV there was no centralized follow-up and care point DBS Samples Posta Uganda Courier from Wakiso Town Impact of Centralizing EID Services only in the Lab  Caregivers of infants tested at ANC or ART Clinic do not know where to return for results and follow-up  Caregivers of infants tested at the lab in OPD receive no counseling or sensitization during sample collection  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 2 nd PCR  No formal referral to ART Clinic if positive

9 4 Days Average (n= 333) 4 Days Average (n= 203) 31 Days Average (n= 194) Sample Drawn Dispatched to JCRC Result arrives at Facility Caregiver Receives Results Arrives at JCRC Average Time between DBS Collection and Caregiver Receiving Results Jinja RRH, Jan 2008 – Feb 2009 On average, caregivers had to wait 69 days to received DBS results Turnaround Time: Long sample and result turnaround time had an adverse effect on whether caregivers receive results or not 30 Days Average (n= 222) Sample Tested Result sent from JCRC

Turnaround Time & Retention: Fewer caregivers receive their results with longer turnaround times, but even in best case percent returning remained low # Days between Sample Collection and Result Arrival at Site

11 Drivers of Loss: HIV-positive infants not being enrolled into care and treatment Identify & test exposed infant Provide results & guide through test algorithm Enroll positives in ART Clinic Retain alive in care/ treatment 1342 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 Limited integration or communication between EID testing and ART clinic  No meetings between EID & ART teams to follow-up referred infants 35% of pos infants receiving results were never enrolled

12 Drivers of Loss: HIV-positive infants not initiated & retained in care after enrollment at ART Clinic Identify & test exposed infant Provide results & guide through test algorithm Enroll positives in ART Clinic Retain alive in care/ treatment 1342 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 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 42% of positive infants in care & treatment were lost

13 Age and Attrition: 59% of infants were captured at greater than 3 months of age Capture and diagnosis of infants at a late age can lead to attrition after initiation on treatment due to rapid disease progression 0-3 Months (41%) Months (7%) Months (11%) Months (10%) 7-9 Months (13%) 4-6 Months (18%) Health FacilityAverage Age at 1st DBS Masaka RRH6.3 months Jinja RRH7.6 months Lira RRH6.2 months Overall Average6.8 months

Having seen the above challenges we undertook to strengthen our EID system, with a package of 6 complementary interventions 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 schedule3. Strengthen & standardize counseling for caregivers of exposed infants4. Improve tracking tools to centralize data & follow infants longitudinally5. Establish referral system for DBS testing and follow-up at EID care point6. Establish referral system for care/treatment at the ART clinic This was piloted in 21 Health facilities of all levels in 8 districts

Assessment of the pilot at several facilities showed high impact across all key areas of EID: DBS testing volumes increased by 40% Average age at testing reduced by 50% Testing CTX initiation increased every month after implementation, from 80% to 99% Cotrim Percent of exposed infants receiving results increased from 50% to 70% Retention Percent of HIV+ infants linked to the ART clinic increased from 50% to 97% ART Linkage Integrated EID into immunization outreachesConsolidated 8 testing labs into 1 National LabSet up new national hubbed transport network EID program has also implemented other high-impact innovations: Increases access and identification Reduces sample- result TAT

16 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 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 Challenges exist, but “EID system strengthening” model has demonstrated high impact & shown feasibility of implementation