Lateralizing HIV Community-led Health Service Delivery: A Potential Gateway to Universal Health Coverage
By guest contributors Lisa Lazarus, Manisha Reza Paul, Akram Pasha, Bhagya Lakshmi, Syed Hafeez Ur Rahman, James Blanchard, Sundar Sundararaman, Sushena Reza-Paul, and Robert Lorway
To achieve universal health coverage (UHC), a central component of the 2030 Sustainable Development Goals (SDG), there is an urgent need for an innovative, flexible, and adaptive model of primary healthcare service delivery. In the field of HIV, innovative models of community-led programs have proliferated. These dynamic delivery modalities often expand beyond HIV prevention and care towards addressing primary healthcare needs, social and financial supports, and responding to stigma, social exclusion, and mental health. This expansion of HIV care towards responding to broader needs offers important lesson for addressing the challenge of meeting UHC by lateralizing approaches towards reaching different populations, geographies, and diseases.
Lateralizing Frameworks for Achieving UHC
Ashodaya Samithi, a sex worker-driven organization in South India, has been at the forefront of HIV intervention design and healthcare provision since 2004. A board historically comprised of male, female, and transgender sex workers, has ensured community ownership and control over decision-making during the peak of the HIV pandemic. Behavioural and biological assessments evaluated Ashodaya’s community-run program as highly successful, showing statistically significant declines in HIV prevalence, and reductions in STIs among sex workers—declines that were scientifically linked to Ashodaya’s empowerment programs.
At the core of Ashodaya’s community-driven approach is the recognition and prioritization of community knowledge acquired through lived experience that critically informs every stage of the program. Ashodaya’s longstanding work is supported through the pillars of community engagement and mobilization, involvement, ownership, and sustainability, and guided by four principles of effective program delivery: demystification (breaking down science into lay forms to share with community), de-stigmatization (addressing community and societal discriminations that inhibit healthcare access), decentralization (enabling community decision-making power), and democratization (ensuring an equal voice for all). These core elements work towards the goals of addressing immediate needs and emerging issues, creating an enabling environment, supporting health service access and utilization, and promoting community-led monitoring and evaluation (Fig.1).
The success of Ashodaya’s approach has led them to “lateralizing” their work in HIV toward other health areas.
Expanding sexual and reproductive health
Between 2013-2016, Ashodaya took part in the Diagonal Interventions to Fast-Forward Enhanced Reproductive Health (DIFFER) project, applying a diagonal intervention which merged horizontal healthcare for the general population in governmental facilities with vertical health programs for sex workers. The DIFFER project began with a situational analysis which found the need to strengthen some of Ashodaya’s existing approaches (mobilisation, peer outreach, and HIV/STI services), with new features such as long-acting family planning methods (Depo-Provera), increased prevention efforts on sexual and gender-based violence, cervical cancer screenings, and referrals for cervical cancer. Ashodaya clinical staff were trained to provide visual inspection using acetic acid cervical cancer screenings and family planning methods and healthcare navigators ensured follow-up at tertiary care hospitals. Additionally, a “Well Women Clinic” was initiated at a local hospital to provide sexual and reproductive health services for women outside of Ashodaya’s membership. During the project, cervical cancer screening and treatment increased from 11.5% to 56%, HIV testing in the past three months increased from 26.3% to 73.3% and the proportion of sex workers using sexual and reproductive health services increased from 25.7% to 51.4% in the past year.
Managing loss-to-follow-up cases for TB co-infection
Given their previous engagements working in partnership with government units, the District Tuberculosis Officer (DTO) reached out to Ashodaya for assistance in 2019 in addressing high rates of loss-to-follow-up and re-linking people to HIV/TB treatment. The dataset shared by the DTO was difficult to use to track individuals as it did not include personal information to re-link those lost-to-follow-up. Building upon their experience in mapping zones where sex workers spend time and community-outreach practices, Ashodaya began the task of finding individuals through repeated visits to villages and conversation with local health workers. Through this process, Ashodaya was able to obtain information to begin re-linking individuals. Contact details were documented in a spreadsheet and then separated at the level of sub-districts and villages. Following this, the outreach team plotted cases on the map to identify clusters.
The process of linking individuals lost-to-follow-up for TB care drew directly from previous successes in adherence support for people living with HIV: 1) contacting the person through phone/at their doorstep; 2) scheduling a meeting at a location of their convenience; 3) dispelling fears/misconceptions of TB/HIV through testimonials; 4) obtaining consent to link individuals to services; 5) ongoing follow-up until linked to the ART centre; and 6) regular follow-up until TB treatment completed and three months of ART adherence. This process re-linked 103/157 (65.6%) cases to their respective centres. Of the remaining 54 individuals, 24 had died, 5 completed treatment with private providers, 6 migrated, and 19 were non-traceable.
Responding to the COVID-19 pandemic
In April 2020, the COVID-19 pandemic forced much of the world into lockdown. WHO guidance focused on maintaining access to essential health services, however, the knowledge brought by community-led interventions was critically absent. For communities with vast experiences in HIV interventions, there was a rapid response to transferring that knowledge towards addressing COVID-19. At the start of the pandemic, Ashodaya began to gather information from their members about their experiences to identify the immediate needs of the community, which included access to ART, loss of household income, and increased vulnerability in terms of safety/security. Focusing on ART access, one key response involved rapidly setting-up an enhance doorstep delivery service. Before the pandemic lockdown, 200-250 Ashodaya members collected treatment from ART centres. After the lockdown, ART centres were re-directed to testing and treating COVID-19. Fear of COVID-19, long wait times, and travel restrictions made it difficult for people to access ART. Ashodaya organized a doorstep-delivery service to allow members to receive ART at home or at a location of their choice.
To ensure doorstep-delivery, Ashodaya needed to access a special travel permit from the government and seek permission from ART centres to distribute treatment. Once granted these requests, community leaders developed a supply chain system for distribution. The system was designed in a way that protected confidentiality and worked to minimize gaps in treatment access, to ensure continued adherence to ART. The success of the system led to other people living with HIV beyond Ashodaya’s core membership of sex workers to request inclusion in the program. Ashodaya expanded the program to anyone residing in their operational zone. Healthcare navigators in charge of outreach collected ART numbers, names, phone numbers, charted out locations, and mapped out distribution spots. This adaptive ART-delivery response ensured that people living with HIV continued to received care and treatment throughout the pandemic (Fig.2).
Conclusion
Documenting and disseminating the processes of lateralization offers crucial direction in furthering the 2030 SDG agenda to “leave no one behind”, including the most marginalized populations. Recognizing the urgency of the SDGs, it is critical to capitalize on the success of decades of community-based HIV programming. Ashodaya’s community-driven approach centres around respecting community knowledge and expertise, which critically informs every stage of their program and provides important insights towards developing context-specific UHC models that respond to the emerging needs of diverse communities globally, while expanding upon the financial investments and gains that have been made within the HIV response.
About the authors:
James Blanchard is a Professor in the Department of Community Health Sciences at the University of Manitoba, Canada. He is the Executive Director of the Institute for Global Public Health and a Tier 1 Canada Research Chair in Epidemiology and Global Public Health. He provides leadership globally to applying research to improve the design and implementation of large public health programs.
Lakshmi is the Program Director of Ashodya Samithi, Mysore, India. She has been involved with HIV programs in the five districts of operation of Ashodaya over the last fifteen years. She started her career in the program as a volunteer, and has served on the Ashodaya board, as faculty of Ashodaya Academy, and has been a sex worker representative at the GFATM ICCM and a community consultant for UNAIDS, WHO, and UNFPA. As a Program Director of the organization, she now leads the process of integrated HIV services in the context of sexual and reproductive health, TB and COVID-19.
Lisa Lazarus is an Assistant Professor at the Institute for Global Public Health, University of Manitoba. She is a critical social scientist, with a focus on community-based research methodologies in the field of HIV sciences. Her research critically examines how we define “success” in global public health interventions, as well as the significant role that communities themselves play in “making success”.
Robert Lorway is a Professor of Medical Anthropology in the Institute for Global Public Health, University of Manitoba, where he holds a Tier 2 Canada Research Chair in Global Intervention Politics and Social Transformation. His research methods and findings directly contribute to the de-monopolization and democratization of global health evidence for sexual health among sex worker activist communities in India and Kenya.
Akram Pasha serves as the Director of Ashodaya Academy. He has been involved in program development for Ashodaya Samithi since 2004 and has a huge body of experience in working in many settings in India, Asia, and Africa among sex worker communities. He has been involved in capacity building and research at the Ashodaya Academy. He is a member of the Core Committee of the All India Network of Sex Workers and has been a community consultant for UNAIDS.
Syed Hafeez-ur Rahman is a non-community member who has been with Ashodaya Samithi from 2004 and has served in varying capacities. He has spearheaded the Ashodaya Academy and has experience in working with sex worker groups across India, Asia and the Pacific, as well as in a number of African countries. He has been instrumental in implementing Ashodaya Projects for BMGF, UNAIDS, UNFPA, The World Bank, and other foundations and private sector donors. He is now providing Secretariat Support for All India Network of Sex Workers as a Coordinator.
Manisha Reza Paul has completed a Master of Commerce from the University of Sydney, Master of Public Health from Brunel University London and Data Analysis Certificate from University of Toronto. Her interest lies in merging AI in creating sustainable health solutions focused on marginalised and vulnerable population. She played a key role in documenting the lateralization process for Ashodaya.
Sushena Reza-Paul is the focal point for PrEP in Asia Pacific through UNAIDS RST and WHO and is passionate about promoting empowerment among sex workers and influencing the processes that promote rights-based approaches in public health. As a faculty member of the University of Manitoba, she set up the earliest intervention program for The Bill and Melinda Gates Foundation in India, which became the foundation for the National Program on AIDS in India. She has been a member of WHO guideline development groups for HIV prevention among key populations and is currently a member of the STI Technical Resource group in India’s HIV national program.
Sundar Sundararaman is a physician with an advanced degree in Psychiatry and has been in the forefront of the HIV response in India and overseas. He works on policy, advocacy, program development, and results that include community sustaining responses. He advises several community organizations and networks as well as donors on investment for change.
Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS.
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