Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Risk factors, Barriers and Facilitators for Linkage and Retention in Care in different settings Dr. B.B.Rewari MD,FRCP, FICP,FIACM,FIMSA WHO National consultant Care, Support and Treatment National Programme Officer (ART) National AIDS Control Organization India BBR--India02/07/13

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Outline of the presentation  Snap shot of National AIDS control Program  Overview of Care, Support and Treatment programme  Risk factors & barriers for linkages & retention in care  Enhancing Patient retention under National programme  Standard Operating Procedures for patient flow in Care Support Treatment Services  Use of M& E systems for optimizing patient retention in HIV Care

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Current HIV Scenario in India First few cases of HIV in India detected in Chennai in 1986 A concentrated low level heterogeneous epidemic, main route of transmission being sexual Prevention is the main focus Prevention programme reaching vulnerable population No. of new infections dropped by 57% over last one decade; death rates leveling off; ART being provided free to 6.5 lakh PLHIVs; India’s programme hailed as a ‘success story’, unique partnership between Govt. and NGOs and a multi-sectoral response

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Declining Trends of HIV Epidemic in India Female: 39% of PLHIV; Children: 7% of PLHIV Source: Technical Report India HIV Estimates 2012, NACO & NIMS

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 District-wise Scenario of HIV/AIDS CategoryNACP-III Definition A> 1% ANC prevalence in any of the sites in the last 3 years B 5% prevalence in any HRG site (STD/FSW/MSM/IDU) C< 1% ANC prevalence in all sites during last 3 years with < 5% in all STD clinic attendees or any HRG, with known hot spots D< 1% ANC prevalence in all sites during last 3 years with < 5% in all STD clinic attendees or any HRG OR no or poor HIV data with no known hot spots CategoryNACP-III A156 B39 C296 D118 New Districts 30 Total609 5

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Targeted Interventions for High Risk Groups (FSW, MSM, IDU, Truckers & Migrants) Link Worker Scheme for rural population Prevention & Control of Sexually Transmitted Infections IEC, Social Mobilization & Mainstreaming Condom promotion Blood safety Counselling & Testing Services (ICTC, PPTCT, HIV/TB) First line & second line ART Care &Support Centres HIV-TB Coordination Focus on PPTCT Treatment of Opportunistic Infections Prevention is the mainstay High risk populations Low risk populations People living with HIV/AIDS Care, Support and Treatment NACP Strategies Institutional Strengthening Strategic Information Management

Kuala Lumpur, Malaysia, 30 June - 3 July % Reduction in New Infections ( ) with Scale-up of Prevention Strategies 29% Reduction in AIDS-related Deaths ( ) with Scale-up of Anti-Retroviral Treatment Evidence of Programme Impact Source: Technical Report India HIV Estimates 2012, NACO & NIMS

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Launched on 1 st April 2004 at 8 institutions in 6 high prevalence states & Delhi Presently scaled up to network of 1100 ART centers and Link ART centers All PLHIV including children registered in HIV care are provided free diagnostic & treatment services Nearly 1.5 million PLHIV registered in HIV care 0.65 million are currently on ART Concept of Link ART centers evolved in 2008 for decentralization of services so as to facilitate easy access to services All ART centers linked to Community Care Centers run by NGOs Care, Support & Treatment Programme in India

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Link ART Centres and LAC Plus Centres ( 850) ART Centres (400) CoE & ART Plus Centres (43) Three-Tier Model of HIV Treatment Service Public Health Infrastructure Selected Medical colleges Medical college and District Level Hospital Sub-District level hospitals & CHC

Kuala Lumpur, Malaysia, 30 June - 3 July 2013

Kuala Lumpur, Malaysia, 30 June - 3 July 2013

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Why Focus on retention? Consequences of Poor Retention Society Increased HIV transmission risk Higher hospitalization rates & burden on health resources Increasing prevalence of resistance Increased need for second & third line therapies Productivity of individual for society Individual Decreased likelihood of timely initiation of ART Further breakdown of immune system & Faster disease progression Increased hospitalization rates Quality of life and survival rates Emergence of resistant viral strains Limited future treatment options Higher financial burden

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Risk factors and barriers for linkage and retention Retention Policy related factors Patient related factors Environmental & Social factors Operational /systemic factors

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Policy related factors Accessibility to testing & treatment services Affordability of services Public health infrastructure & systems Political & government commitment Sustainability of services Risk factors and barriers for linkage and Retention

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Operational /Systemic issues Stigma & discrimination in health care facilities Attitude of staff in health care facilities Timings of facilities, long waiting at facility ( esp. for HRGs & children) Lack of knowledge /skills in Health care Providers Lack of guidelines & SoPs Lack of /inadequate M & E systems Poor Supply chain of commodities Quality of services Risk factors and barriers for linkage and Retention (contd.)….

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Patients specific issues Economic reasons Long distance to facilities Status of health – perception of good health/ ill health/coexisting diseases or illness Lack of support from family & community Other engagement/priorities/being away from home Lack of information on linkages, follow up & treatment adherence Complicated drug schedules Side-effects & toxicities Misconceptions about treatment Treatment Fatigue Risk factors and barriers for linkage and Retention (contd.)….

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Environmental & Social factors Natural Calamities - earthquakes, floods Climatic conditions : rains, extremes of weather Occupation, harvesting seasons Migration Festivities/ family engagements Cross border issues Risk factors and barriers for linkage and Retention (contd.)….

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Facilitators for retention in Care In India  Policy Factors Free of cost testing & treatment HIV testing & treatment services built upon the existing health systems by strengthening/supporting them Strong commitment from Government of India Mainstreaming initiatives Evidence based scale up Drug prices brought down by Indian Generic companies- very helpful for patients in private set up

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 o Operational/systemic factors  Standard Operating Procedures for patient follow up  Standardized reporting & recording mechanism  Operational research studies commissioned to identify the factors affecting services uptake  Data collected through M & E, research & field experience is used for: »updating standard operating procedures for the facilities »monitoring quality of care including CD4 test for all, early ART initiation, ART for all those eligible, LFU/Missed rates » for policy making, planning scale up and launching new initiatives to address the gaps for better outcomes –Structured training curriculums for all staff on issues related to HIV, SoPs & M & E systems Facilitators for retention in Care (Contd.)…

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Patient related factors  PLHIV appointed as Care coordinator at all ART centers to make services more patient friendly, for peer counseling and to reduce stigma  Scale up and decentralization of ART services done so as to improve accessibility to services.  Established grievance redressal mechanism in each state  Community engagement--CCC and DLN outreach workers involved in patient tracking and monthly meeting held between CCC & ART centre for exchange of lists and information  Laisoning with other ministries & departments so that PLHIV can take benefits of existing social protection schemes like free travel, food security, widow pension etc Facilitators for retention in Care (Contd.)…

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Standard Operating Procedures for patient flow in Care Support Treatment Services

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Key Features of M&E systems for ART Standardised recording and reporting tools Standardised definitions for all indicators PLHA software to capture indivualised information of each PLHIV Robust M & E system: SIMS Team trainings of ART centre staff on M& E Operational Research to support the programme TRAINING MODULETRAINING MODULE On MONITORING AND EVALUATION TOOLS For HIV CARE AND ANTIRETROVIRAL TREATMENT April 2011

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Recording and reporting tools are for… Individual treatment records/case management Line-list for specific groups for intensified tracking e.g. pregnant women, HIV exposed/infected infants, TB-HIV Clinic Management formats- ‘daily due lists’, CD 4 due list, appointment dairy, Phone calls on missing appointment etc Monthly report formats for routine programme monitoring

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 M&E Systems for CST Stage 1: Testing to Enrollment Stage 2: Enrollment to Eligibility Stage 3: Eligibility to Start of ART Stage 4: ART initiation to Life Long Care From HIV detection to enrollment in HIV care facility. From enrollment in HIV care to ART eligibility testing. From point of ART eligibility to the start of ART From ART initiation to continued life long ART follow up Various Stages in Retention of patients in HIV care

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Data from ART centres showed that there was a significant loss from detection at ICTC to registration at ART centres ? Why this drop out when they have come in interface with a trained counselor at testing site  Reasons were varied  ICTC vs 200 ART centres  Huge distances, loss of wages  Lack of awareness about ART programme  Asymptomatic  Inadequate post test counseling  Stigma, discrimination, fear of disclosure What next, How this helped? Stage 1. Testing to enrolment in HIV care: Barriers in linkages

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 OR Study on Factors Affecting Enrollment of PLHA into ART services (2011) The study was done at 30 ICTC and 10 ART centres. Cohort of 1057 newly diagnosed HIV-positive people followed over 2 months in four states of country.

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 OR Study on Factors Affecting Enrollment of PLHA into ART services (2011) (contd.)…. Most commonly cited problems among those registered: Transportation and distance to ART centres 11% Financial constraints and loss of wages 4.5% Difficulty in traveling when sick 5.3% Locating the ART centre in the hospital 2.9% Fear of disclosure & stigma 9% Most commonly cited problems among those not registered : Perception of relatively good health 30% Work and family engagements 22% Fear of disclosure & stigma 9%

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Strategies taken up to improve linkages from ICTC detection to registration in HIV Care Improving accessibility to ART services Scale up & decentralization of ART services Pre-ART care introduced at LAC level Improving systems for monitoring  Triplicate Referral slips with feedback mechanism have been introduced  E-mechanisms such as google docs being used for sharing & generating daily due lists Monthly coordination meetings between ART centres & ICTCs at DAPCU level for data reconciliation Tracking system for those not registering by ICTC counselors Documentary address proof and phone number of patient and one care giver( most patients have mobile nos.) for tracking in case of LFU

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 State AIDS Control Society Referral Form Name & Address of ICTC:__________________________ Name & Address of ICTC:_________________________ Copy-1 (to be retained at the ICTC) Copy-2 (to be carried by the client to the ART centre) Copy-3 (to be sent to ART centre through e- mail or post) Part-1 to be filled by the ICTC Counselor/Staff Nurse Name of Counselor: PID No. Date of referral PID No. Dat e of refe rral PID No. Dat e of refe rral Name of the client(optional): Age:Sex:Age:Sex:Age:Sex: Ph. No.: Category of the client (Tick Mark): ANC/General/Exposed infant Name and address of the ART centre referred to Counselor's signature: Part-2 to be filled by the ART centre staff Has the patient reached ART centre: Yes/No If Yes Pre ART Regn No. CD4 Count ART Initiated (Yes/No) Pre ART Regn No. CD 4 Cou nt ART Initiated (Yes/No) Pre ART Regn No. CD 4 Cou nt ART Initiated (Yes/No) If ART initiated reason ART Counselor Signature Triplicate ICTC-ART Referral Slip

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 ICTC –Registration in HIV care-Improved with better M& E systems

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Stage 2: Enrollment to Eligibility Barriers Lack of proper counseling at the time of registration Non-availability of facility for CD4 testing at all sites, Patients registering at late hours when OP lab facilities are closed Non –availability of Lab technician Supply chain of CD4 kits

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 CD linkage and sample transportation mechanism developed, samples transported by the lab technicians Patients who have borderline CD4 counts are monitored more closely and frequently Proper counseling and CD4 due list are the two important measures to ensure regular follow up and timely initiation of ART A Green Book is issued to patient that gives details about his CD4 count treatment and follow up visits in local language, which helps patient in keeping his appointments Stage 2: Enrollment to Eligibility Solutions

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Stage 3: ART Eligibility to ART Intiation Barriers in retention in stage 3 Delay in timely CD4 count or clinical assessment (due to Pre-ART LFU); Lack of patient information to patient on ART initiation Lack of preparedness/reluctance of the patient for initiation of ART Delay in laboratory investigations Co-existing TB infection & others

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 CD4 reports to be given by the counselor with proper counseling about ART on follow up CD4 reports to be given by the counselor with proper counseling about ART on follow up ART initiation preparedness counseling is an important component of Pre-ART counseling. All aspects of the ART are discussed and explained to the patient Line listing of patients eligible for ART but not Initiated Follow up of this list by phone calls and through various outreach mechanisms. Outcome: Nearly 86% of patients initiated on ART within one quarter Outcome: Nearly 86% of patients initiated on ART within one quarter Stage 3: ART Eligibility to ART Enrolment Solutions

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 HIV-TB collaboration: All HIV-TB co-infected patients are eligible for ART. Referral of PLHIV into RNTCP for TB diagnosis & treatment led to gaps at this stage. Many patients used to turn up after ATT completion HIV-T B collaborative activities strengthened. Line list of TB suspects prepared ART centres at ART centres and given to RNTCP for feedback. Patients are being intiatied now early after start of ATT Stage 3: ART Eligibility to ART Enrolment Solutions

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 HIV-TB patients: linkage to CPT and ART – Trend

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 System Reasons why ART Patients Fail to adhere to treatment In case of child patients: Not able to get the tablets of the right size. The lines (and the wait) at the centre are too long. Doctor or counsellor did not explain how to take it. Drugs are out of stock at the centre. Medicines cost too much The ART centre is too far away. Reasons why ART patients fail to take their pills as directed. Stage 4: ART initiation to Life Long Care

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 I went on holiday. Medicine makes me more sick. I’m feeling better now. I don’t want to mix it with my ayurvedic medicine. I drank alcohol and forgot. I’m saving the drugs in case I can not go to the centre on time. Nothing can kill AIDS. I have taken the medicine for 6 months. It’s too complicated. ART drugs produce heat in the body. I don’t have time. My husband and I both have to take the pills but his ran out so I decided to share mine. I’m worried my family will ask too many questions and find out my status. I forgot. This medicine will make me impotent. Reasons why ART patients fail to take their pills as directed. Personal Reasons why ART Patients Fail to Take Pills as Directed

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 OR to see clients perspectives on LFU An ASSESSMENT OF ART CENTERS IN INDIA : CLIENT & PROVIDER PERSPECTIVE was carried out  Data were gathered in 27 ART centers through: –Facility Assessment –Health Providers Interview –Exit interviews with Clients A total of 1373 clients and at least 5 health care providers were interviewed per centre Journal of Indian Medical Association, vol. 107, pp , 2009

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 As reported, 14 percent (164) were not visiting regularly. Reasons for not coming regularly: 1.Long distance 2.Financial reason

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Average expenditure incurred for availing ART services (in Rs) Note: Though free treatment is available in the center, expenditure defined here related to the transportation cost for reaching ART center and returning back, money spent on tea or food during waiting time etc.

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Planning strategies taken up after research outcomes to improve retention of patients on ART  Need for Decentralisation of ART services Concept of Link ART centres was initiated in 2007 to provide ART Services closer to clients Concept of Link ART centres was initiated in 2007 to provide ART Services closer to clients  Any concession in bus or train travel will benefit Concessions in Railway fare. States have also taken up with state Transport  Need for capacity building Centres of Excellence were developed to cater for training needs Centres of Excellence were developed to cater for training needs Outcome: On ART LFU rates has been brought down from 12 % to 7%

Kuala Lumpur, Malaysia, 30 June - 3 July 2013

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 LINK ART CENTERS The study was done in four states: Gujarat, Maharashtra, Rajasthan & UP Results indicated Time taken for travel reduced considerably (Median time taken :60 minutes) The distance traversed also reduced (Median distance: 25 Km) 97 % of the patients were attending LAC regularly every month 95 % PLHIV reported that waiting time <30 minutes for availing counseling & collection of drugs Median expenditure on travel Rs 40

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Mechanism to reduce “On ART LFU” 1.All the patients who were supposed to come to the ART centre on a particular day as per the “daily due list” but have not come, need to be listed at the end of the day 2.If they do not turn up in the next 48 hours, they need to be called up through telephone 3.Line list to track “On-ART” patients who have missed their appointments shall be prepared on a weekly basis and shared with the ORWs. All those patients who were scheduled to collect ARV drugs in that particular week but did not show up, shall be entered in that week’s line list, which shall then be shared with ORW’s of CCC, DLN, etc

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Date of receipt of form at CCC: mm/dd/yy Date Of Returning the form at ART: dd/mm/yy S.No ART Center ID Name of Client Address Age Sex Date of Start of ART Drug Regime Due Date of visit at ARTwhen the patient did not turn up Reasons for follow up Client ID given at CCC Date of visit by ORW Outcome of Visit Discription Date of visit at ART Center post follow- up at CCC MIS 1. Agreed to visit ART 2. LFU 2. PhysicallyTaken to ART Center 3. Others 3. Facilitated Financial Support 4. Family involvement 5. Information about Death 6. Others Tracker Format

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Additional challenges in pre-ART A patient registered under "Pre-ART" care is supposed to come to ART centre, at least once in six months for follow up and CD4 test Patient being mostly asymptomatic fail to come on appointed date(every six months) Get into other forms of treatment Present again when symptomatic, will have low CD 4 this time If he does not come on the scheduled date, he shall be listed as “Pre-ART” patient with “CD4 due” Measures to track these patients shall be initiated immediately like for those LFU on ART and line lists of such patients shall be shared with the ORWs of CCC, ICTC, DAPCU during the meetings

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Community engagement PLHIV appointed as Care coordinator as all ART centers All ART centers linked to Community Care Centers ORW at CCC are PLHIV More than 200 District level networks involved with ART centers PLHIV part of all Technical resource groups and working groups for planning of NACP Use of AIDS forum for understanding problems faced by PLHIV State level Grievence Redressal Committees has PLHIV as a member

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Consideration for Special Groups Special timings for FSW at ART centre Leave from school to CLHIV to attend ART centre Co location of ART and OST centers at Public health facilities to reduce loss to follow up among IDUs Considering split timings/Sunday open for children ART also given to parents at pediatric centers where CLHIV is enrolled

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Other facilitating factors Co location of VCTC and ART centers Integration of PPTCT with ICTC 50% travel concession by railways Free travel by bus in many states Linkages to AAY, subsidized food schemes Linkage to other social protection schemes of government, like widow pension, monetary benefit for regularity at Art centre's to farmers In advanced stages in formulating an insurance scheme for PLHIV

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 How OR studies Impacted Retention in Care NACO OR Study on “Assessment of ART Centers: Providers and clients perspectives” led to concept of LAC NACO OR Study “Factors affecting enrollment of PLHIV in India” led to expansion of LAC scheme to LAC plus “Assessment of CCC” led to revision of CCC concept Study on low access to second line led to concept of ART plus centers Field assessment led to two monthly supply of ART to stable PLHIV instead of one month We Evolved As We Came Across Challenges and Went Along

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 State reportNational report Data file CENTRALISED DATA BASE (REPORTING UNIT MASTER) MAINTENANCE CENTRE AT NACO Selected reports can be viewed on Internet PROCESSOUTPUT DATA ENTRY OF SCHEDULES AT STATE AIDS CONTROL SOCIETIES INPUT FORMAT TIME FRAME (monthly) Filled input format from primary data collection unit to SACS–1 -7 t of the next month. SACS to NACO (electronically) 7–15 of the next month Computerized Management Information System At Reporting Unit

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Smart Health Card Smart Card : Proposed Design Unique Id No: Name:Vikram Singh Address:House No 243 Jungpura New Delhi Card Valid Upto:27/01/10 Signature of Issuing Authority Photograph Signature Issuing Authority Card Validity NameUnique ID Card Features 32 Kb Microprocessor Contact Interface SCOSTA Compliant PVC/ABS/PET Body As per ISO 7816 Background Printing Security Printing

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Monitoring and supervision Significant increase in number of facilities providing ART and the decentralization necessitated the need for a strong monitoring & supervisory structure. Realizing the need for Uniformity and Quality of care, NACO appointed Regional Coordinators (RC) for Care, Support & Treatment services in different parts of country. They are mandated to travel for at least days a month to the ART centers and LAC in their region The RC’s (and SACS officials) visit allotted ART Centres at least once in two months and send regular weekly and monthly reports to NACO. They also mentor the sites on technical issues during the visit and through e- communication. Special focus is given on centers which have high LFU/ death rate etc or are facing some operational problems.

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Summary Retention in care is quite challenging Variety of factors affect retention, which may vary from country to country, region to region within the country Health seeking behavior of people is also an important factor Counseling and rapport during initial contact is most vital Decentralization of services, abolition of user fee, provision of free travel, reduction in stigma and discrimination are very vital factors Certain innovative approaches like triplicate referal slips, daily due list, CD4 due list, Eligible but not on ART list and use of tracker format by the community outreach workers have worked well in India Johns Hopkins Medicine. "How Doctors And Their Patients Communicate May Be The Key To Stopping HIV Patient 'No Shows'." Medical News Today. MediLexicon,Intl.,21Jun <

Kuala Lumpur, Malaysia, 30 June - 3 July 2013 Thank You