Review Article Volume 14 Issue 3
1Dr PH candidate, Harvard, Harvard T H Chan School of Public Health, 677 Huntington Ave, USA
2Senior Pediatrician cum Neonatologist [Senior CMO] at Guru Gobind Singh Government Hospital Complex, India
3Deputy Director Mainstreaming, Delhi State AIDS Control Society, Dr Baba Saheb Ambedkar Hospital Complex, India
4Additional Project Director, Delhi State AIDS Control Society, Dr. Baba Saheb Ambedkar Hospital Complex, India
Correspondence: Dr. Anil Kumar Gupta, Senior Pediatrician, Guru Gobind Singh Govt Hospital, Govt of Delhi & Former Additional Project Director cum Technical Lead, Delhi State AIDS Control Society, Govt of Delhi, India, Tel +917827953512
Received: October 23, 2024 | Published: November 13, 2024
Citation: Darswal M, Gupta AK, Joshi BC, et al. Incentive based continuum of care for people living with HIV including orphan vulnerable children- the Delhi Model. J Pediatr Neonatal Care. 2024;14(3):186-191. DOI: 10.15406/jpnc.2024.14.00564
Background: Delhi State AIDS Control Society (DSACS) addressed critical integration of services for Orphan and Vulnerable Children (OVC) in context of HIV. They bridged the policy and implementation divide by formulating a multisectoral-strategy in April 2012, creating a model of "Continuum-of-Care for People-Living with HIV (PLHIV), OVC & Children-Affected-by-HIV (ChABH)” in Delhi. With input from the National Commission for Protection of Child Rights, DSACS sensitized political and administrative machinery about needs and challenges related to HIV/AIDS. DSACS developed an incentive-based system for Antiretroviral Therapy (ART) adherence, incorporating safeguards and robust monitoring. Delhi Government's sustained financial commitment and DSACS programmatic-innovation provide a scalable blueprint for India and global initiatives.
Description: This ongoing Delhi Government's scheme focuses on household-economic-strengthening of PLHIV as an incentive for broader behaviour change based-on specific eligibility conditions. Beneficiaries fall into four categories: PLHIV, including children on ART; double orphan HIV positive children (OCI); destitute children living with HIV/in institutional care (DCI); and double orphan ChABH in community-based care in Delhi. Category-wise fixed-monthly financial assistance is released to beneficiaries via direct-bank-transfers leveraging Aadhaar-platform to eliminate corruption. Adherence to treatment is mandatory to continue cash-transfers. Linkages with other schemes established to maximize impact.
Lessons learned: In its 11-year evolution, Delhi model has grown from 1110 to 6467 beneficiaries, including 6383 PLHIV, 34 double OCI, 50 DCI, and 27 double orphan ChABH, with 5875 (90.8%) currently active excluding beneficiaries who expired (n=328), migrated/ transferred out of Delhi (n=115), opted-out ART/or lost-to-follow-up (n=135), and 14 CABA who turned major. Steady progress and 98% ART adherence mark positive outcomes. DSACS eased eligibility criteria in 2018, facilitating hurdle-free enrollment, while responding to cost-inflation by enhancing financial assistance, showcasing program adaptability. Achieving >95% ART adherence has significantly boosted survival rates, underscoring program's positive impact on beneficiary health. The scheme's INR 14,69,35,600 expenditure in 2022-23, just 0.13% of Delhi Health Department's plan-outlay, signals a cost-effective investment. Extrapolating this nationally would represent 1.5% of India's Health Ministry's current plan-outlay.
Conclusion/next steps: This innovative model is implementable on large-scale in India and around the globe but requires not only financial commitment but also coordinated efforts, policy adjustments, and collaboration between various stakeholders.
Keywords: orphan vulnerable children, children affected by HIV, people living with HIV, antiretroviral therapy, household economic strengthening, continuum of care.
ART, antiretroviral therapy; CBOs, community based organizations; DO-ChABH, double orphan children affected by HIV; CTS, cash transfer scheme; DCI, destitute children living with HIV; DSACS, Delhi State AIDS Control Society; LTFU, lost to follow-up; NACO, national AIDS control organization; NGOs, non-government organizations; OCI, orphan children living with HIV; OVC, orphan vulnerable children; PLHIV, people living with HIV; y-o-y, year-on-year
In India, approximately 2.4 million people live with HIV (PLHIV), with a national adult prevalence of 0.21%.1 Despite the proven effectiveness of Antiretroviral Therapy (ART) in suppressing the HIV virus,2 accessibility remains a challenge. Delhi, with a higher prevalence of 0.31%, has registered 81,642 adults and 3,180 children in HIV care since 2004. Among them, 60,821 adults and 2,310 children have initiated ART, with 36,629 adults and 1,529 children currently receiving ongoing ART. Unfortunately, Delhi's HIV mortality rate is 4.61 per 100,000 population, exceeding national rate of 3.08.1
To address the socio-economic impact of HIV-related deaths, Delhi State AIDS Control Society (DSACS) launched a state government-sponsored cash transfer scheme (CTS) on April 1, 2012.3 This program targets orphan vulnerable children (OVC) and children affected by HIV (ChABH), aiming to economically strengthen households of PLHIV and ChABH. The CTS, sanctioned by the Delhi Government and implemented since April 1, 2012, adheres to a well-defined set of standard operating procedures. These procedures encompass eligibility criteria, the process of identifying cases, disbursement methods to beneficiaries, and measures to prevent corruption.3 Objectives include funding travel costs for health services, providing nutritional support, and enhancing ART adherence.
Cash transfer programs are increasingly recognized as effective strategies for influencing behavioral change and improving outcomes in HIV care.4 However, most initiatives globally have primarily operated within research settings and transient.5–7
Cash transfer programs have a positive effect on mitigating HIV incidence and increasing retention in HIV care. These results show the potential of cash transfer programs for HIV prevention and care, especially among people in extreme poverty, and highlight that cash transfer programs must be considered when creating policies for HIV/AIDS control, as indicated by the UNAIDS 95-95-95 Target of the HIV Care Continuum.8 The unique feature highlighted here is the sustained nature of the CTS implemented by DSACS. This program, funded by the Delhi government for the past 11 years, stands out for its long-term commitment. The scheme's features were presented at a South Asia ChABH meeting in 2013.9 The success of this innovative model underscores its potential for widespread implementation throughout India and world-wide. This communication not only highlights the scheme's achievements but also addresses implementation challenges and outlines ongoing efforts to strengthen and enhance this vital initiative.
The study adopts a descriptive approach to analyze the implementation and impact of the CTS sanctioned by the Delhi Government. It involves a comprehensive examination of the scheme's eligibility criteria, enrollment process, disbursement methods, and amendments in the scheme over time. Additionally, the study utilizes ART program data, feedback from beneficiaries and various NGOs to assess the scheme's coverage, effectiveness, and challenges.
Methods processes
The eligibility conditions of the scheme are structured into four distinct categories, each specifying unique criteria and financial aid amounts:
For double orphans (Category II, IV) at least one parent should have succumbed to HIV. Upon turning 18, double OCI/DCI beneficiaries are shifted to Category I, while assistance to ChABH ceased at the age of 18.
There is no limit on the number of beneficiaries in a family. Financial assistance was supplementary to any other government aid like old age pension, widow pension, etc.
Implementation of the CTS is a multi-step process involving coordination between government ART clinics, DSACS, and beneficiaries. The process is structured as follows:-
For Category I (PLHIV, including children):
For Categories II (double OCI) and IV (DO- ChABH):
For Category III (DCI):
To perform a comprehensive analysis, the year-on-year (y-o-y) performance of the cash transfer initiative was evaluated by assessing the number of beneficiaries enrolled in the scheme across various categories for the study period spanning from April 1, 2012, to October 31, 2023. The data from the state ART program for the study period was also examined. This data is accessible to DSACS through the Computerized Management Information System, a web-based application developed by the National AIDS Control Organization (NACO). The y-o-y coverage of the CTS was analyzed in relation to the number of PLHIV who are alive and receiving ART, excluding individuals who opted out treatment, migrated, or lost to follow-up (LTFU) or deceased.
Additionally, the assessment involved an analysis of ART adherence rates for October 2023, derived from a random sample of individuals living with HIV undergoing Antiretroviral Therapy (ART), which was compared with the ART adherence rate among beneficiaries of the scheme. The ART adherence was rated as good, average, and poor based on adherence rates >95%, 80-95%, and <80%, respectively.
Furthermore, information regarding the status of destitute HIV-positive children benefiting from the scheme while under institutional care at Naz Foundation, Siam New Generation Trust, and Deepti Foundation, as well as children affected by HIV in community-based care, was directly acquired through networking with the respective NGOs and community-based organizations.
In August 2018, DSACS conducted a comprehensive analysis and review of the challenges encountered by beneficiaries during enrollment and continuation. This assessment was based on feedback gathered from ART clinics, the Grievance Committee of DSACS, as well as direct interactions with beneficiaries and relevant NGOs. Subsequently, several modifications were implemented in the scheme in December 2019 to enhance its uptake and execution. The impact of these adjustments on the subsequent uptake of the CTS was evaluated.
Cumulative performance of the scheme
From April 1, 2012, to October 31, 2023, a total of 6,467 beneficiaries were prospectively enrolled for cash transfers. This included 6,356 individuals classified as PLHIV (Category 1), comprising 6,020 adults and 336 children. Additionally, 34 HIV positive double orphans (Category 2) residing under the care of grandparents, elder siblings, or extended family; 50 destitute HIV positive children in institutional care (Category 3); and 27 DO-ChABH (Category 4) in community-based care in Delhi were also part of this beneficiary pool.
Total 5875 (90.8%) beneficiaries are currently active, excluding beneficiaries that expired (n=328), including 308 adults & 11 children living with HIV, 8 DCI, and 1 double OCI); migrated or transferred out of Delhi (n=115); opted out ART/or lost to follow-up (n=135). Also, 14 DO-ChABH on reaching the age of major were transitioned out of scheme. Further, cash transfers ceased for 21 PLHIV who subsequently became ineligible based on income criteria. For 29 double OCI and DCI who turned 18 years of age, the cash transfers were transitioned to Category I for life-long financial assistance.
ART adherence rates in beneficiaries
Excluding ChABH (Category 4, HIV negative), a total of 5731 (98%) of the 5848 currently active beneficiaries, including PLHIV, double OCI and DCI, were confirmed adherent to ART, demonstrating good ART adherence (≥ 95%). This contrasts with 21,266 (91.0%) of a random sample of 23,356 PLHIV on ART who exhibited good adherence, as reported by 11 ART clinics in the survey conducted in October 2023 (p < 0.001).
Year-on-year performance of the scheme
As depicted in Figure 1, there has been a consistent increase in the number of beneficiaries over the 11-year implementation period, starting from the baseline of 1,110 beneficiaries (1,083 PLHIV and 27 HIV orphans) enrolled in the first year of the scheme. However, upon closer examination of the y-o-y enrollment patterns, after initial enrollment of sizable number there was a slow increase in the number of beneficiaries. This trend persisted even after the revision in ART guidelines in May 2017, which advocated for treating all PLHIV irrespective of clinical stage or CD4 count.10 This suggests that despite the expanded eligibility criteria, the anticipated surge in PLHIV (Category 1) did not materialize. This motivated DSACS to analyze various challenges in the implementation of the scheme.
Implementation challenges
Since the rollout of the scheme in 2012, DSACS has received feedback from Mainstreaming Program Officer regarding the challenges faced by both potential and enrolled beneficiaries, largely due to the stringent eligibility conditions established during the scheme's conceptualization. In response to these concerns, a grievance committee was formed to address issues that could be resolved through coordination with ART centres, the revenue department, NGOs, and PLHIV networks. In 2018, the grievance committee identified several key challenges that required attention:
The current differentiated ART delivery involving quarterly visits for stable patients and monthly visits for new or unstable patients, coupled with subsequent procedural steps for payment release, has led to delays in disbursing financial support to beneficiaries.
Strengthening initiatives
Recognizing the various obstacles encountered by beneficiaries during the enrollment process, DSACS took the initiative to propose revisions to the eligibility criteria of the scheme and increase the amount of financial assistance in response to the rising Cost Inflation Index. These proposals were approved by the Delhi Government in December 2019, marking a significant milestone. To further improve the uptake of the scheme, the following initiatives and interventions have been undertaken:
The Delhi State AIDS Control Society (DSACS) has been implementing the Delhi Government funded Cash Transfer Scheme (CTS) since 2012, to support People Living with HIV (PLHIV) and Orphans and Vulnerable Children (OVC) affected by HIV. Now in its 12th year, the scheme continues to demonstrate its significance, particularly following amendments made in 2019 based on recommendations from the grievance committee. These changes led to a modest but noticeable increase in the uptake of the scheme, as reflected in enrollment trends.
Enrollment data, as shown in Figure 2, reveals a steady rise in participation for Category I (PLHIV), with enrollment increasing from 14.8% in 2019 to 16.9% in 2023.
Similarly, Category III (destitute children living with HIV) also experienced a year-on-year increase in enrollment, as shown in Figure 3. These trends affirm the positive impact of the scheme’s revisions. Feedback from stakeholders and beneficiaries further supports these findings, showing improved satisfaction and engagement with the scheme post-amendments.
Persistent challenges
Despite these improvements, the current enrollment figures remain low, especially for orphans and other vulnerable children:
This limited enrollment highlights the ongoing challenges in reaching all eligible children, likely due to several factors:
Study limitations
A significant challenge in the implementation of the CTS is the lack of a robust Monitoring and Evaluation (M&E) system. While attendance records from ART clinics and financial audits provide some level of oversight, they fail to deliver a comprehensive assessment of the scheme's overall impact. The implementation of a third-party evaluation, as recommended in global best practices, could facilitate an impartial analysis of the CTS's effectiveness. Such an evaluation would not only support the refinement of the scheme but also provide critical insights into its long-term benefits for beneficiaries.
Furthermore, the absence of detailed data on beneficiaries facing challenges with the CTS constrains a full understanding of the scheme's scope and efficacy. Systematically gathering this information is essential for identifying service delivery bottlenecks and implementing targeted improvements. By addressing these limitations, we can enhance the program’s effectiveness and ensure it more effectively meets the needs of its target population. Ultimately, strengthening the M&E framework will pave the way for more informed decision-making and policy adjustments, fostering greater positive outcomes for beneficiaries.
Financial implications
The financial cost of the program for the fiscal year 2022-23 amounted to INR 14,69,35,600, representing only 0.13% of the Delhi Health Department’s plan outlay. This figure highlights the cost-effectiveness of the initiative, suggesting that it could be scaled nationally. If implemented on a broader scale, the CTS would constitute approximately 1.5% of India’s Health Ministry’s plan outlay, making it a financially feasible model for wider adoption across the country.
The CTS has made notable progress in supporting PLHIV and children affected by HIV, with DSACS demonstrating a strong commitment to refining the scheme over time. Key achievements include improved adherence to ART and better access to financial support for the target population. However, there is still room for improvement, particularly in addressing the needs of single orphans, revising ART enrollment criteria to include all HIV-positive children regardless of ART duration, and implementing a more rigorous monitoring system.
Expanding outreach efforts to increase enrollment, particularly among orphans and vulnerable children, and exploring the potential for a national rollout could provide a sustainable model for HIV-related social protection schemes across India. Further research is necessary to evaluate the long-term effects of cash transfers on health outcomes like viral suppression. By making these adjustments, the CTS can amplify its impact and make a more substantial contribution to the well-being of PLHIV and HIV-affected children across the country.
All authors contributed to the study conception and design. Mrinalini Darswal did overall supervision of the study. Material preparation, data collection and analysis were performed by Bipin Chandra Joshi. Anil Kumar Gupta was instrumental in planning and launch of the scheme from its inception, drafted the first manuscript and revised it critically for important intellectual content. Praveen Kumar took initiatives for improvements and long -term sustainability of the scheme. All authors actively worked and approved the final manuscript.
The work presented in the paper has been accorded approval of Ethical Committee of Delhi State AIDS Control Society vide Approval Number: DSACS/Ethics-Committee/01-12-23. Further, the consent from individual subjects was not required as their identity had not been disclosed in the study.
Not applicable
The authors confirm that the data supporting the findings of this study are available within the article.
The authors express their gratitude to the National Commission for Protection of Child Rights for bringing attention to the issue of HIV orphans in Delhi, which ultimately spurred the formulation of the scheme. Additionally, we extend our thanks to the staff of all Government ART centres in Delhi, as well as the support staff of DSACS, particularly Sh. Kuldeep Rai, Sh. Surender Rana, and Sh. Ishwar Singh, along with NGOs dedicated to aiding children affected by HIV, for their invaluable cooperation. Their contributions are indispensable to the successful implementation of this scheme.
This research received no external funding.
The authors declare no conflicts of interest.
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