AIDSTAR-One | CASE STUDY SERIES July 2012Integrating HIV Care: ImprovingPrograms, Improving the Lives ofPeople Living with HIV I t is a blisteringly hot day in the city of Sangli in Maharashtra, a southern state in India. A group of women and men living with HIV have come together at the Aamhich Aamache Drop- In Center (DIC) to talk. Several women tell harrowing stories of the stigma and discrimination they received at the hands of their family and community. Speaking in a whisper, a man talks of his wife who, after months of such stigma, took her own life, leaving Andrew Fullem him behind to raise their children. As time passes, though, the stories move from despair to triumph.Staff and volunteers, Village Many of the women are involved in income-generating activities which,Information Center, Kolhapur. for the first time in their lives, provide them with economic stability and freedom. Men and women alike describe how addressing their own internalized stigma has allowed them to advocate for themselves with clinic staff, service agencies, and communities, demanding that their rights be honored and they be treated and cared for with dignity and respect. They are able to better navigate a complex system of clinical and social support services, with the assistance of counselors and peer advocates. The services provided at the DICs are a central part of the Integrated Care Program (ICP) implemented in selected districts in Maharashtra. Launched in 2010 in six high-prevalence districts in Maharashtra, the ICP quickly resulted in significant improvements in service utilization by people living with HIV (PLHIV) while enhancing the quality andBy Andrew Fullem continuity of comprehensive care and diminishing the loss to follow-and Jamine Peterson up (LTFU). The ICP builds individuals and institutions through its main strategies of working with existing public, private, and communityAIDSTAR-OneJohn Snow, Inc.1616 North Ft. Myer Drive, 16th Floor This publication was made possible through the support of the U.S. Agency for InternationalArlington, VA 22209 USA Development under contract number GHH-I-00-07-00059-00, AIDS Support and Technical Assistance Resources (AIDSTAR-One) Project, Sector I, Task Order 1, funded January 31, 2008,Tel.: +1 703-528-7474 and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR).Fax: +1 703-528-7480 Disclaimer: The author’s views expressed in this publication do not necessarily reflect the views of the United States Agencywww.aidstar-one.com for International Development or the United States Government.
AIDSTAR-One | CASE STUDY SERIESinstitutions and resources; linking PLHIV withthe full range of HIV care and services; and “When I come to the drop-in center,providing PLHIV with the tools to improve their own I feel like I’ve come to my mother’s home.”lives. The staff of the DICs, many of whom arePLHIV themselves, perform critical functions ascoordinators of the network of services. by the World Health Organization (WHO) asFor the clients who use the DICs, the centers fundamental to the treatment of chronic diseaseare a haven. As one women said, “When I come (WHO 2003)—has become even more prominent.to the drop-in center, I feel like I’ve come to my Increased numbers of people in care and onmother’s home.” treatment burdens an already stressed health and social support system. Clinics are crowded and staff are taxed by the volume of clients and theBackground increasing complexity of their clinical and social support needs. Programs struggle to attend to theIndia has made significant progress addressing increasing number of new clients and people whothe HIV epidemic. As a result of comprehensive have been in care, with little or no time to focusplanning and government and donor support, on the challenges to care and adherence, such asthe country began to witness a decline in HIV the enrollment of PLHIV in DICs, referral for otherprevalence in 2000; prevalence dropped from 0.41 health services, decentralization of care, missedpercent to 0.31 percent in 2009. While this is good visits, and especially, LTFU. Adherence has beennews, much needs to be done to scale up testing identified as a significant challenge and publicand care and treatment services. The National health issue for both patients on ART and those notAIDS Control Organization (NACO) sets national yet clinically eligible (Amuron et al. 2009; Berg et al.strategies for HIV management with decentralized 2005; Cauldbeck et al. 2009).implementation by state- and district-level agencies.NACO set a goal of diagnosing 80 percent of PLHIV These challenges are especially urgent inand providing them with quality care and treatment Maharashtra, one of India’s high-prevalence states.services by 2015. Of the nearly 2.39 million adults Adult prevalence in Maharashtra is higher than theand children living with HIV in India, over 1.2 million national rate (0.55 percent); 443,620 children andare registered with the government. NACO is also adults live with HIV. More than half (261,442) arescaling up antiretroviral treatment (ART) services. registered, and 90,484 adults and 6,301 childrenCurrently, there are 486,173 people who receive are on ART, receiving care from 51 governmentART through a network of 342 government-run ART ART Centers and 85 ART Link Centers. HIV isCenters and 579 ART Link Centers (outside major concentrated in high-risk groups such as femaleurban areas). Unmet needs remain high, however; sex workers, men who have sex with men, andmore women than men receive ART, and relatively migrants (NACO 2011).few children benefit from this lifesaving therapy(NACO 2011). Until recently, the relationship between clinical programs and community-based efforts inWith success, come challenges. With increased Maharashtra was weak and strained, characterizedaccess to ART for the management and treatment by underperforming linkage and referral systems,of HIV, the issue of adherence—recognized duplicative efforts, and ineffective communication.2 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESIn response to this situation, the U.S. President’s coordinating body for the ICP, built upon theEmergency Plan for AIDS Relief (PEPFAR) through existing infrastructure and programs in the districts,the U.S. Agency for International Development identified opportunities to strengthen what was(USAID), worked with NACO, the Maharashtra available, and improved links among serviceState AIDS Control Society (MSACS), and the Avert delivery partners. Figure 1 details the servicesSociety,1 a local nongovernmental organization and relationships that comprise the ICP approach(NGO) to develop and implement a comprehensive, implemented in Maharashtra. As the figure shows,integrated HIV care program—the ICP—in six no single provider is capable of providing thehigh-prevalence districts of Maharashtra. The entire scope of services needed by PLHIV andICP, launched in 2010, brought together a broad their families. PLHIV require a complex set ofrange of government stakeholders, community- services that are accessed through referrals withinbased service providers, and NGOs to design, and among health facilities, other welfare andimplement, monitor, and evaluate medical and support programs, and the community. Hence, thesocial support services for families and individuals ICP’s principal components include stakeholderliving with and affected by HIV that would improve coordination, service linkages for clients throughenrollment and decrease LTFU and serve as a the DICs, and support for decentralized services.model for consideration by other districts in thestate and, more broadly, in India. This document Figure 1. Elements of the Integrated Care Programdescribes the development, components, and in Maharashtraaccomplishments of the ICP. Information wasgathered through a review of Avert Society and Peer supportDIC documents and field visits to five of the six and voluntary servicesICP districts, and through interviews and focus Integrated counseling andgroups discussions with district government testing centers, Economic civil hospitals, support: food,officials, medical providers, and DIC staff ART centers, money, addiction vocationaland clients. treatment training centers IndividualsDesigning and Implementing seeking or needing carethe Integrated Care Program Government schemes: Sanjay One-to-one Gandhi counseling, Niradhar rebuilding self- Yojana, below poverty line,When the planning for the ICP began, many of esteem ration card, charitablethe necessary components for comprehensive Fighting trustsHIV services were in place, including government stigma, ensuringstructures and coordinating bodies, HIV treatment rights of PLHIVcenters, and NGOs dedicated to meeting theneeds of PLHIV and high-risk groups. TheAvert Society, which functioned as the lead Source: recreated from Avert Society (2010).1 The Avert Society is a Maharashtra-based NGO created through a bilateral agreement between the governments of India and the United States. Avert col-laborates with MSACS to support HIV management strategies by providing technical assistance to a variety of programs, including the ICP. This NGO’s focus ison reaching high-risk groups. The intention at the inception of the ICP was for the leadership of the ICP to be transferred from the Avert Society to the DistrictAIDS Prevention and Control Units once the program was established. Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 3
AIDSTAR-One | CASE STUDY SERIES SERVICES PROVIDED Coordinating Services BY DROP-IN CENTERS Coordination and communication are fundamental to the ICP 1. Psychosocial support approach—ensuring that clients are linked to the necessary services, and counseling that efforts are not duplicated, and that all stakeholders in the care • Individual counseling network carry out and are recognized for their roles in the network. • Self-help groups Working with government program managers, clinical service • Stigma and discrimination providers, PLHIV organizations, and community-based organizations, • Disclosure the Avert Society helped each district revitalize existing monthly • Prevention with positives meetings. Stakeholders were already meeting routinely to discuss • Condom distribution activities; the Avert Society used these meetings to refocus efforts on • Nutrition a specific issue. The Avert Society worked with partners to implement • Adherence support a traditional quality improvement approach in which participants • Child support shared data, identified challenges, devised easy and cost-sensitive • Couples counseling solutions, and measured progress each month. Routinely collected 2. Peer support data, including progress toward achieving enrollment goals and • Stigma and discrimination recovering those LTFU, were identified as a benchmark for overall • Disclosure program quality. The District AIDS Prevention and Control Unit • Adherence support (DAPCU) of each district was made responsible for reviewing the 3. Referrals data from the previous meeting, summarizing achievements and • Government schemes outstanding issues, and sharing the latest data. However, it became • Child and widow services the shared responsibility of all attending the meeting to address • Medical care and support issues and to answer two critical questions: 1) How do each of the • Missed visit follow-up partners contribute to getting and keeping clients in care? and, 4. Advocacy 2) How do they recover missing clients as quickly as possible while • Legal services addressing the reasons for the dropout? Participants develop concrete • Property plans for increasing enrollment and addressing LTFU at the individual • mproved health and social I and program level. Plans detail responsibility for actual follow-up services/pressure groups with specific partners and identify links to appropriate community 5. Economic opportunities programs, including those targeting high-risk groups. • Income generation activities • Skills training • Employment opportunities Drop-in Centers: Linking People 6. Marriage mela* 7. Emergency financial support Living with HIV with Support and and services. Service Delivery The seven DICs supported by the Avert Society function as the * A social gathering of single/widowed networking centers of the ICP approach—linking each PLHIV with HIV-positive men and women that serves as a venue for meeting poten- appropriate services while providing a broad range of support for tial seroconcordant partners. individuals. Designed, managed, and operated by local organizations of PLHIV with technical and financial support from the Avert Society4 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESand other organizations, the DICs and their services, and that programs are not duplicatingstaff are central to the success of the integrated each other’s efforts.care approach, which connects clients not onlywith clinical, community, and home-based HIV Links to government schemes: Besides routineservices, but also with government schemes for outreach, the linkage between the networks andrelated services. Each PLHIV network supported government schemes is a unique feature of theby the Avert Society provides a comprehensive ICP. Beginning in Nagpur with NNP+ (Nagpur network of people living with HIV), the Avert Societyset of client-centered public, NGO, or private- systematically worked with stakeholders to setsector services (see Box 1). The district-level up a system of promotional camps that simplifyoffice of each network provides all of the services enrollment in a variety of government schemesand supports activities at the taluka level (an such as charity trusts, ration cards, below povertyadministrative unit at the subdistrict level), as well line schemes, and the Sanjay Gandhi Niradharas a limited amount of home-based care. All of the Yojana financial assistance. Outreach workers worknetworks triage home-based services, prioritizing with clients beforehand to ensure that they have allclients who have missed clinical appointments or the necessary papers and documentation available.are in need of emergency support, although the On the day of the camps, the outreach workers helpcapacity of DICs to provide routine home care is PLHIV navigate brief meetings with the schemelimited, given the increasing number of clients. officials and submit the paperwork; if eligible, clients are enrolled immediately or within days of the camp.Outreach: Outreach workers are a fundamental The government scheme camps are now beingpart of the response to HIV in Maharashtra, conducted in three districts, with districts sharingproviding one-on-one and group counseling, information so that they learn from one another.addressing internal and external stigma, andserving as a critical bridge between clients andclinical and social service providers. Outreach Linking Clients to Decentralizedworkers, typically employees of PLHIV networks,are trained in three curricula (HIV Basics in Clinical Services12 modules, Counselor Training, and Program ART Centers are responsible for providingManagement) from the Avert Society and also comprehensive HIV clinical care, but they arereceive on-the-job support from network and Avert overburdened. Offering services at ART LinkSociety staff. Centers closer to clients would achieve a number of important objectives—relieving the pressures onIn all of the five districts visited, network outreach providers at ART Centers while reducing the burdenworkers routinely collaborated with a wide range on clients, particularly in transportation costs andof services and facilities, including the Link Worker lost wages. However, it was recognized that in orderScheme (a rural outreach program), the prevention to be successful, PLHIV networks would need to beof parent-to-child transmission services, auxiliary engaged in the process of decentralization. Workingnurse midwives, the condom depot, programs for in collaboration with the DICs, outreach workerschildren affected by HIV, and Integrated Counseling were placed in the ART Centers to guide clients toand Testing Centers, to ensure that clients are decentralized services and link them to serviceslinked to appropriate and routinely available closer to their homes. Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 5
AIDSTAR-One | CASE STUDY SERIESResults It is clear that the ICP and DIC programs helped the networks to increase enrollment. Each districtThe ICP very quickly achieved significant impacts, had set a goal of enrolling 500 new people into theirin terms of both service coverage and quality and DIC (except Ratnagiri, which set a goal of 200).life improvements among PLHIV. A large part of the All but one network surpassed the previous year’sinitiative’s success is its implementation through enrollment and all exceeded targets. A number ofexisting programs and structures, which also factors led to this result, including 1) placement ofstrengthens what were largely vertical programs. outreach workers from the DICs at ART Centers,Results for specific program goals are which put PLHIV networks directly in contact withsummarized next. potential members and allowed them to steer clients toward the network; 2) the DIC’s range ofIncreased enrollment in DICs: An important high-quality, client-centered, and comprehensivepurpose of the ICP was to increase enrollment into services that address clients’ health and well-being;the PLHIV networks by strengthening relationships and 3) the addition of related services, such aswith ART Centers, increasing the scope and depth linkage to government schemes.of services, and decentralizing key functions. It should be noted that one of the program’s goalsTo determine if this goal was met, enrollment data was to increase the enrollment of individuals fromfrom the PLHIV networks participating in the ICP high-risk groups. Unfortunately DICs and ARTwas analyzed, comparing data for the first year of Centers do not routinely collect information thatimplementation to historical data (see Figure 2). allows the identification of individual clients as fromFigure 2. Enrollment in drop-in center programs by district 1,400 1,200 1,155 1,103 1,017 1,000 868 800 712 728 600 421457 400 335 253 222 200 135 103 97 41 39 6 15 20 15 0 Nagpur Ratnagiri Sangli Satara Kolhapur Enrolled 2009-2010 Enrolled 2010-2011 Adult Enrolled 2010-2011 Children Enrolled 2010-2011 High-Risk Group6 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESa specific high-risk group. Therefore, it was not Centers. In Sangli, the primary reasons for notpossible to determine if this goal had been met, returning to care was unwillingness of two groups,though program managers reported that they felt pre-ART clients and youth, to accept their HIVit had. status. In Ratnagiri, three clients would not return to care because periodic stockouts made access toReduced loss to follow-up: Besides increasing antiretrovirals (ARVs) unreliable.access to HIV care, a primary goal of the ICPwas addressing LTFU among ART and pre-ART Improved quality of life for PLHIV: Each DICpatients. Staff from the DAPCUs, ART Centers, and offers comprehensive social support programsPLHIV networks realized that the situation required to improve the quality of life of its members. Theimmediate, collaborative, and result-oriented DICs report a significant increase in participationattention. Data provided by the DICs as part of this in self-help groups, pressure or advocacy groups,review show that those efforts have paid off (see and income-generating activities, contributing to anTable 1). This review focused on the DIC’s LTFU improved quality of life for participants. Over 100interventions only, not those of other HIV service men and women who participated in focus groupsagencies such as ART Centers, which also have reported decreased stigma and discrimination andLTFU concerns for which DICs are not responsible. increased autonomy as a result of their participation in ICP activities.Programs reported that the greatest challenge incontacting lost clients was incomplete information, Improved linkages to government schemes:an issue for approximately two-thirds of clients This linkage has proved to be an importantclassified as LTFU. Key informant interviews program innovation. Districts where this initiative isrevealed that for those clients for whom information implemented report increased enrollment in linkagewas sufficient, the interval between LTFU and programs, with particular success using promotionalclients’ return to care is typically less than one camps (see Table 2).month, and in Kolhapur, DIC and ART Centerstaff reported that 70 percent of clients return to Over 1,000 PLHIV now have access to government-care within one week of outreach from DIC staff. provided basic nutrition, housing, and economicSangli and Ratnagiri were the only districts that support because of the ICP’s enrollment activities,reported challenges getting clients to return to ART especially the promotional camps. Camp programsTable 1. Resolution of loss to follow-up (April 2010–March 2011) District Reported LTFU Transferred/ Returned Unresolved/ LTFU rate (%) Died/ to care Not returned to Incomplete care information Kolhapur 109 31 78 0 0 Nagpur 342 186 176 0 0 Ratnagiri 329 127 199 3 0.9 Sangli 600 298 200 102 17 Satara 298 210 88 0 0 Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 7
AIDSTAR-One | CASE STUDY SERIESTable 2. Government scheme enrollmentDistrict Attended Number Non-camp Number Total enrolled promotional enrolled referral enrolled camp from camps (non-camp)Kolhapur N/A N/A 134 44 44Nagpur 1,274 407 700 43 450Ratnagiri 133 92 N/A N/A 92Sangli 1,101 101 523 396 497Totals 2,508 600 1,357 483 1,083were able to achieve significant impact because and 2) the familiarity and comfort of existingthey entailed both preparing clients beforehand and relationships with ART Center staff.engaging government scheme managers in intensediscussion. In Nagpur and Ratnagiri particularly, theratio of those reached to those enrolled was much What Worked Wellgreater for camp activities than for the non-camp As described previously, the ICP’s use of existingapproach. services and initiatives was critical to its success, facilitating rapid implementation and fosteringDecentralized services: As a result of the ICP’s change from within the system and the community.efforts to decentralize the services and staffing However, a number of related factors, describedof PLHIV networks, outreach workers reportedly next, enhanced ICP’s progress in effecting change.spent more time in communities and less time atheadquarters. This was due in part to the increased Fostering leadership: The success of the ICPtime they spent on LTFU visits and to working required the identification of champions that ledfrom office space in talukas. Also, all of the PLHIV integration efforts within and between each of thenetworks reported increases in the number of stakeholder groups. In each district, DAPCUs,volunteers trained to provide services and support PLHIV networks, ART Centers, Link Workerat the community level, as well as increases in the Schemes, and other partners identified a leadernumber of new and continuing support groups, who was responsible for overseeing implementationpressure/advocacy groups, and self-help groups. of ICP approaches and services. Typically, this person was a senior staff person within theDuring this period, enrollment in the ART Link DAPCU, who had the authority and responsibilityCenters also increased, although in most cases to bring together partners. It is important to selectenrollment goals were not fully achieved. Focus champions from within the government structuregroup discussions with clients and staff of the who have responsibility and authority, as well asART Centers identified two major reasons why status among the stakeholders. These championsclients do not switch from the ART Centers to the were critical both to mobilizing internal resources toLink Centers: 1) concerns about confidentiality, commit to this effort and to routinely communicatingstatus disclosure, and status within the community; with their counterparts in other agencies. The8 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESability of these leaders to both maneuver withintheir organizations and forge external partnerships “The outreach worker has taught mehelped create an environment that nourished the to stand on my own to support my wifeestablishment and growth of the ICP. Also vital was and children.”the leadership from within the DICs, where a staffmember was assigned to coordinate ICP activities. Also, DAPCUs provide capacity building to NGOsImportantly, DAPCUs fostered leadership through and village government officials outside thea consistent approach that sought to forge multiple monthly meetings.linkages, such as between public-sector providersand NGOs, and among a range of NGOs. DAPCU’s Strengthening outreach workers: Under theleadership and clear articulation of the rationale ICP, the role of outreach workers was focusedfor these linkages helped create an environment and integrated into the broader health system.in which all of the partners feel their contributions Outreach workers now typically spend a part ofare respected. NGOs, DICs, and other partners every day at ART Centers providing assistancereported increased engagement and interest by in a number of critical areas, including ensuringDAPCU staff in their programs. that clients move rapidly from testing sites to pre- ART visits, supporting patient navigation for non-Supporting coordination: Monthly coordination HIV services including tuberculosis screeningmeetings had a significant impact during the and intensive adherence counseling, and mostdesign, implementation, and monitoring of the ICP. importantly, playing a central role in the follow-There are several reasons why this coordination up of ART and pre-ART clients who have missedeffort has worked so well. First, the monthly clinical appointments. This new focus required ameetings were not new obligations added to the change in the scope of work for many outreachalready busy schedules of providers; instead, the workers. Many outreach workers have begunmeetings were re-engineered to address current delegating the management of self-help groups andconcerns. Second, participation in the meeting is routine group counseling sessions to clients, whichmultidisciplinary, including various levels of staff allows the outreach workers to focus on their newinvolved in client care and follow-up, including responsibilities while building clients’ skills.program managers, clinicians, counselors, andoutreach workers. All participants are expected to Empowering PLHIV: The DICs initially offered aparticipate in the meeting, to critically review data, core group of activities, but added other activitiesand to provide input to solve challenges based to keep stride with clients’ growth developmenton their unique position and viewpoint. Third, and needs. Even though empowering clients wascoordination meetings are also forums for capacity not a primary objective of the DICs, it was evidentbuilding and sharing information about changes in that the new activities enhanced clients’ self-worthNACO policy and other emerging issues. Finally, and confidence. Clients went from relying on thethe monthly meeting is not the only venue or outreach workers to advocating on their behalfopportunity to coordinate. In all the districts visited and taking on their own issues and those of theirfor this review, stakeholders reported weekly, and in peers. This increased empowerment facilitated thesome cases, more frequently. Coordination efforts formation of pressure groups that sought solutionsfocused on sharing information and ensuring a for problems affecting individual PLHIVs (familyminimal duplication of effort, particularly in home issues) and groups (e.g., discrimination faced atvisits to clients who have missed appointments. the local clinic). As a client reported, “The outreach Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 9
AIDSTAR-One | CASE STUDY SERIESworker has taught me to stand on my own to districts are implementing innovations to addresssupport my wife and children.” As a result, PLHIV local needs. In Kolhapur, for example, the DAPCUare better able to deal with the negative self-image developed its own electronic listing to address LTFUthat often is part of living with HIV. in near real-time, and sending the list out daily to organizations responsible for assisting with LTFU.Another activity that evolved was income- Previously, Kshitij, the PLHIV network in that area,generating activities. As many women became only received the LTFU list at the DAPCU monthlywidows, they needed a way to support themselves. meetings. Now, the ART Center and the NGO canThe DICs started income-generating activities, communicate daily, using a password-protectedincluding microlending to start up women-owned electronic system, about patients who did not attendbusinesses such as tailor shops and craft making. the clinic. Outreach workers can then be sentMen were not excluded from income-generating out immediately to track them down, rather thanactivities, and both men and women learned skills waiting until the following month to receive the listto make products that they could sell, or received from DAPCU.loans to start up small businesses of their own.Meeting the needs of children living withHIV: With its focus on providing family-centered Challengescare, the ICP required the development of services Limited geographic coverage of the ICP/tailored to the unique needs of children living DIC program: Although the ICP program madewith HIV—a highly vulnerable and neglected a significant impact in a relatively short period ofgroup. DICs routinely offer self-help groups time, it has been limited in part by its inability tovarious services specifically for children living reach entire districts. Currently, the ICP targetswith HIV. During these sessions, counselors specific talukas in each district, using epidemiologicprovide support on issues that affect children, and program data to prioritize where services willincluding disclosure, bereavement, stigma, and be offered. This approach enables the program todiscrimination. In Kolhapur, the DIC created a establish a firm foundation and prioritize limitedcorner in the office where children can gather and resources where the greatest impact could beplay. This provides parents with a respite during achieved. However, significant unmet demandvisits and allows children to interact with other remains. Given current staffing levels, even withchildren who face similar challenges. Because a decentralization, it is not feasible for the currentnumber of grandparents are responsible for the outreach workers to provide services to morecare of children living with HIV, routine home-based talukas. Concerns about transport costs to reachvisits were identified as critical, both for supporting more remote talukas also hamper efforts to expandcaretakers and providing one-on-one counseling the model.to children. Unmet needs of growing children: AlthoughImproving data for patient management the ICP has been able to meet some of the needsand program monitoring: All of the DAPCUs of children living with HIV, more needs to be done.have prioritized efforts to improve data collection Staff have received training on serving youth, butand use. The use of monthly data has allowed it is inadequate to meet the complex needs ofprograms to monitor enrollment more closely and young girls and boys. More targeted training on theto address challenges such as LTFU. Several unique needs of children and adolescents living10 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESwith HIV is required at all levels and among all as temporary stockouts, side effects, or toxicity.stakeholders. Activities should include developing Counseling messages need to be tailored tochild-centered and adolescent information, address the reasons for the switch, new dosingeducation, and communication materials and age- schedules, related dietary restrictions, and anyand development stage-appropriate approaches to side effects from the new drugs. The second needdisclosure, sexuality, and adherence. The current addresses second-line drugs, which are needed byprograms and initiatives do not have the full set of an increasing number of PLHIV and, until recently,skills and services needed to address the changing were unavailable in district ART Centers. Patientsneeds of this group. Also, most programs lack the are usually moved to a second-line regimenmaterials and skills to build the capacity of parents because of a failure of the first-line regimen, eitherand other adult caregivers to support children living due to the viral strain or to adherence problems. Aswith HIV as they transition to adolescence and with regimen switching, counseling for second-lineadulthood. Lastly, clinical providers need training on drugs must address side effects, dosing and dosinggiving appropriate support to children, particularly schedules, dietary restrictions, and an increasedthose on ARVs as they transition to adult regimens focus on adherence. Lastly, because PLHIV liveand become increasingly responsible for managing longer as a result of improved clinical care andtheir own clinical care. access to ARVs, new adherence approaches will be needed for long-term survivors.Evolving counseling needs: Counselors,outreach workers, and clients all reported the Meeting the needs of high-risk groups:need for additional technical support to update According to Maharashtra’s HIV epidemiologicalcounseling skills. As the HIV treatment program in data, infection rates are significantly higher amongIndia matures, the needs of clients are becoming high-risk groups; the ICP strategy was developedmore complex. Staff and beneficiaries mentioned to meet the specific needs of these marginalizedimmediate needs in three areas. The first area is individuals. However, data from ART Centers,regimen switching. Some PLHIV need to switch ART Link Centers, and DICs indicate that fewtheir HIV drugs for a number of reasons, such people who self-identified as from a high-risk group utilize care and support services. So, although clients may be from high-risk groups, there is no way to verify this with the available data. The lack of client-level information about risk and environmental factors that may affect adherence, disclosure, stigma, and discrimination greatly limits the ability of programs to effectively meet the needs of clients. To minimize barriers to care and ensure that high-risk groups can receive maximum benefit from treatment, staff in all programs need to be able to gather more detailed information about clients’ risk factors and to tailor adherence and prevention with positive programs to address Andrew Fullem those risks. Improved counseling skills for working with high-risk groups should be part of efforts toPatient support group, Guruprasad, Ratnagiri. improve information gathering. Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 11
AIDSTAR-One | CASE STUDY SERIESContinuing stigma and discrimination: ARV stockouts, will affect ICP’s future directions,PLHIV, outreach workers, and counselors all but are beyond the control of ICP programreport a positive shift in stigma at the individual, managers. The following recommendations focushousehold, and community levels as a result of their on factors that DAPCUs and the networks canwork. However, stigma in the health care system affect and apply.is widespread. Clients report accepting attitudeswithin the ART Centers and ART Link Centers, but Continue and expand ICPs: In just over a year,when they move outside the protected confines the ICP approach implemented by PLHIV networks,of these programs, they are almost immediately DAPCUs, and other stakeholders in selectedfaced with stigma and discrimination. This raises districts in Maharashtra has been successful. Thechallenges to service access and makes it more ICP should continue in the districts that are alreadydifficult to meet clients’ non-HIV health needs, implementing this approach, with an emphasis onincluding services for tuberculosis, obstetrics and continuing the support at the district and talukagynecology, and oncology. level and expanding opportunities to provide similar services elsewhere, particularly in those talukasContinuing need for economic opportunities: with significant numbers of PLHIV. Future directionsInitial efforts to address the economic situation of should especially emphasize continuation of thePLHIV have succeeded. Entrepreneurs received monthly coordinating meetings and support toloans to start businesses using established the PLHIV networks. DAPCUs should considermicrofinancing approaches, and loan repayment rotating the meeting location to highlight successesappears to be on schedule. For income-generating and concerns of programs in different parts ofactivities to be sustainable, many participants need the district. While the transition of support for thetraining in business management and marketing. PLHIV networks moves from the Avert SocietyCurrently, the network provides these services to MSACS, all partners will need to monitor thedirectly. For these new businesspeople to reach situation closely.their highest potential, linkages need to be madewith other businesspeople or community leaders MSACS and other State AIDS Societies shouldwho can provide further training in business consider replicating the ICP approach ofmanagement. Also, PLHIV who are not participating coordination, outreach, and service delivery acrossin income-generating programs reported challenges government and NGOs throughout India. Statein finding permanent employment in the formal AIDS Societies considering replication shouldsector. In most cases, the ICP and the networks do not overcomplicate the approach; the success ofnot have the resources or skills needed to broker the ICP and DIC models has been mainly builtemployment with local businesspeople. on the re-engineering of existing structures to meet new needs and expectations. Ownership ofFuture Programming and the approach and outcomes has always rested with the DAPCUs and PLHIV networks, withRecommendations targeted technical assistance from the Avert Society. Such an approach should be replicated inThe ICPs are entering a transition period, with expansion efforts.support for the PLHIV networks moving from theAvert Society to MSACS. A number of factors will To remain relevant, PLHIV networks need tohave an impact on future programs. Some, such as routinely assess client needs and develop12 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESinterventions or linkages to address those needs. In Once the guidelines are approved, NACO and Statethe near term, a number of initiatives are needed, AIDS Societies should develop technical assistanceincluding ones that address 1) adolescent-focused guidance on the rollout of the DIC guidelines andHIV treatment and support services, 2) expanded expectations for service contracting.economic and livelihood opportunities, and 3)stigma and discrimination at health care facilities. Address the needs of high-risk groups:Also, ART Centers may consider working with DICs Programs need to increase their focus on improvingto revise the initial follow-up schedule for ART the ability of ART Centers, ART Link Centers, andpatients to create strong relationships with PLHIV DICs to assess and meet the needs of high-riskand to reduce the likelihood of LTFU. Ratnagiri, for groups. Client profiles and risk assessments needexample, has devised schemes to develop stronger to be carried out routinely to gather informationrelationships with patients. Once a client enters pre- about each client’s risk-taking behaviors andART services, the ART Center schedules monthly personal environment to develop appropriate,visits for six months rather than a single six-month individualized care plans.check-up. This allows patients to become familiar Support second-generation training: As thewith the clinic and the staff, including the outreach ICP matures, clinical DIC staff will need additionalworkers, so that when they start ART they are training on emerging technical areas, includingused to going to the clinic regularly. Additionally, regimen switching, second-line drugs, adherencethe ART Center in Ratnagiri places an emphasis support for long-term survivors, and the transitionon pediatric patients and sees them more regularly of children to adolescent and adult HIV care.than required. One of the ways they do this is to PLHIV network staff will also need training on theschedule clinic dates to coincide with immunization emerging roles of outreach workers in supportingdays and wellness checks. decentralized PLHIV groups, which might include skills in the training of trainers, conflict resolution,Establish national DIC standards: NACO has and consensus building.drafted the DIC guidelines and the Avert Societyis advocating expediting the finalization including Continue decentralization: It is critical forincorporating the lessons learned from the Avert MSACS, DAPCUs, and PLHIV networks to continueProject; approved guidelines are needed to ensure decentralization by increasing the use of ARTstandardization within districts and across India. Link Centers, which will both ease the burden onIn the meantime, the Avert Society and others already overworked clinical staff at ART Centershave written and implemented standard operating and reduce some of the economic burden placedprocedures using the draft documents as a guide. on clients. A unique facet of the current program isGoing forward, it will be important for NACO to that the decision to be seen at the ART Link Centerclearly articulate the vision, mission, and scope of is ultimately left to the client. To the extent possible,services for DICs. The final guidelines should allow this should remain the case. This will require staffstates sufficient flexibility to adapt the approach to from ART Centers, ART Link Centers, and PLHIVmeet local context, but should also clearly outline networks to address client concerns about patientboth the process and the expected outcomes confidentiality. Unless clients feel their privacyagainst which program performance will can be protected, many are unlikely to seek outbe measured. care in facilities closer to their home, regardless of Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 13
AIDSTAR-One | CASE STUDY SERIEScost savings. Also, strategies that link community, sector managers to stay current about changestuberculosis, and HIV programs, such as the one in to scheme requirements. Lastly, network andKolhapur, should be supported and encouraged in government scheme staff in districts or statesother settings. considering similar ventures should visit the districts that are already implementing such programs.The PLHIV networks have made great strides in During the development of the ICP in Maharashtra,decentralizing services, resulting in even greater these visits provided invaluable lessons on design,patient autonomy and self-reliance. These efforts implementation, and monitoring.should continue and PLHIV self-help groups andpressure groups should become increasingly Discretionary funds: The PLHIV networks playautonomous. Programs should also consider a critical role in improving their clients’ quality ofstrategies that engage PLHIV in LTFU efforts. life. The funding for most of the project activitiesAlso, PLHIV networks need to engage MSACS such as the DICs and Link Worker Schemes comesin a conversation about how to offer services in through grants supported by the Government,more talukas given the increased demand and the the Global Fund to Fight AIDS, Tuberculosis andstresses on existing providers. Malaria, and donors like USAID. Several of the networks also have discretionary funds available toStrengthen the linkages with government meet clients’ emergency needs, including funeralschemes: Linkages to government schemes expenses, but typically these and other kinds ofcontribute significantly to the comprehensive noncore services must draw on other revenueservices offered by DICs. As these efforts go schemes. Networks should receive support toforward, attention to a number of critical activities enable them to carry out fundraising to create ais crucial. First, DIC and ART Center staff should pool of unrestricted funds. In Ratnagiri, the PLHIVreceive formal training and should participate network Guruprasad has a fundraising strategy thatin information sessions about the scheme includes but goes beyond direct donations. Therequirements, which is ideally led by the municipal organization sponsors an annual concert; incomeor government managers responsible for oversight from this event may be used to cover clients’of the schemes. Also, PLHIV network staff need emergency needs as well as activities that are notto cultivate and maintain a relationship with public- supported by other donors. ■14 AIDSTAR-One | July 2012
AIDSTAR-One | CASE STUDY SERIESREFERENCES ACKNOWLEDGMENTS AIDSTAR-One would like to thank the staff of theAmuron, B., G. Namara, J. Birungi, C. Nabiryo, J.Levin, H. Grosskurth, A. Coutinho, and S. Jaffar. Avert Society who generously provided their time2009. Mortality and Loss-to-Follow-up During and insights in the development of this case study,the Pre-Treatment Period in an Antiretroviral particularly Leena Rane, Anjana Palve, and AnnaTherapy Programme under Normal Health Service Joy. AIDSTAR-One would also like to thank theConditions in Uganda. BMC Public Health 9:290. staff, volunteers, and clients of the drop-in centers who contributed significant time and insights intoAvert Society. 2010. “Care & Support of People their programs and the impact on the lives of peopleLiving with HIV: Tale of Commitment, Perseverance,Faith & Hope.” Maharashtra, India: Avert Society. living with HIV. Thanks also to Elizabeth Berard with the U.S. Agency for International DevelopmentBerg, M., S. A. Safren, M. J. Mimiaga, C. Grasso, S. (USAID)/Washington for her review of the caseBoswell, and K. H. Mayer. 2005. No adherence to study. Finally, the authors would like to thank theMedical Appointments is Associated with Increased USAID/India Mission for its support and guidance,Plasma HIV RNA and Decreased CD4 Cell Counts including Sanjay Kapur and Sangeeta Kaul, and toin a Community-Based HIV Primary Care Clinic. Sampath Kumar for his technical review and editing.AIDS Care 17(7):902–7.Cauldbeck, M. B., C. O’Connor, M. B. O’Connor, RECOMMENDED CITATIONJ. A. Saunders, et al. 2009. Adherence to Anti-Retroviral Therapy among HIV Patients in Fullem, Andrew, and Jamine Peterson. 2012.Bangalore, India. AIDS Research and Therapy 6:7. Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV. CaseNational AIDS Control Organisation (NACO). 2011. Study Series. Arlington, VA: USAID’s AIDS SupportNational AIDS Control Programme Phase III. State and Technical Assistance Resources, AIDSTAR-Fact Sheets. March 2011. India: Ministry of Health & One, Task Order 1.Family Welfare, Government of India.World Health Organization (WHO). 2003. Please visit www.AIDSTAR-One.com for additionalAdherence to Long-term Therapies. Evidence for AIDSTAR-One case studies and other HIV- andAction. Geneva: WHO. AIDS-related resources. Integrating HIV Care: Improving Programs, Improving the Lives of People Living with HIV 15
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