While COVID-19 has disrupted many people’s livelihoods, people living with HIV/AIDS face an additional burden because of the stigma and discrimination they often encounter, which can make it hard to find work, according to Shreepal Saptasagar, director at Yerala Projects Society — a nonprofit working to support the health and well-being of rural Indian populations and a 2019 Gilead Asia Pacific Rainbow Grant recipient.
According to the “India HIV Estimates 2019” report, there are 2.35 million people living with HIV in India, with Maharashtra having the most of any state. Although the prevalence rate may be considered low on an international scale, the size of the overall population in India means it has the third-most people with HIV.
Indian women in particular are disproportionately affected by stigma and discrimination, Saptasagar said, making it extremely difficult for them to gain an education and find a sustainable income.
“The effect of [male] domination and discrimination [against] women becomes even worse for those already marginalized because of their economy, HIV status, and community to which they belong.”— Shreepal Saptasagar, director, Yerala Projects Society
“While implementing various HIV/AIDS programs in the [Maharashtra] districts, we [have come] across a number of women and girls — particularly those who are destitute, infected, and affected by HIV/AIDS and who have been isolated from their families,” he said.
COVID-19 is further limiting opportunities to find work. As of March, India’s unemployment rate is nearly 7%.
Speaking to Devex, Saptasagar explained how YPS — through an unrestricted grant project under the Gilead Asia Pacific Rainbow Grant — is working to support women infected and affected by HIV through microcredit support groups and how it has ensured that this work is continuing during the pandemic.
This conversation has been edited for length and clarity.
Talk us through the work Yerala Projects Society does in helping people living with HIV/AIDS to overcome stigma they may face when trying to establish a livelihood.
The motive behind our project is to organize HIV-positive women and girls, along with like-minded HIV-negative women, through a common platform called “mixed women microcredit support groups.” These groups offer training on various skills, capacities, and empower women to overcome their socioeconomic challenges.
These groups are the safe forums for women and girls to discuss sensitive issues like sexual health, STIs, HIV/AIDS, condoms, drugs, and death. They help to reduce fear, misconception, stigma, and discrimination associated with HIV/AIDS in the community.
Group members are trained in a number of skills and are given knowledge that encompasses Indian lifestyles, access to health services, monthly savings, accounting, and initiation of microenterprises. Nutrition, HIV/AIDS counseling, and health strategies also complement this.
These groups then link women with the government schemes and financial institutions for financial support and subsidies so that they can expand their microenterprises or businesses and sustain a livelihood.
Since its inception in 1976, YPS has engaged in sustainable community development, wherein the beneficiaries are partners. … YPS, under the Rainbow Grant project, connected with district- and state-level community networks linking more than 3,600-plus people living with HIV through mixed women microcredit support groups in 2020-21.
How has the project supported women in India thus far?
Men dominate societal and family life in India. This has been the case in the past and still continues to be practiced in the majority of households. Though this mindset is changing with urbanization and education, still there is a long way to go for permanent change. The effect of [male] domination and discrimination [against] women becomes even worse for those already marginalized because of their economy, HIV status, and community to which they belong.
The project has helped strengthen the capacity and empower women and girls infected and affected by HIV and/or AIDS through skills development, access to financial and health services, and the provision of social cohesion. The project … supports the women in India in the following [ways]:
One, educates its members and the community on HIV/AIDS and related issues, reducing misconceptions and taboos [and] leading to reduced stigma and discrimination about HIV. Two, helps in building the psychosocial capacity of women and girls infected and affected by HIV/AIDS and their families, resulting in better living. Three, creates an opportunity for women, girls, and their families to start microenterprises to earn additional income to support themselves. Four, creates an opportunity for women and girls to establish community linkages for easy access to health and HIV-related services. Five, helps to strengthen the socioeconomic condition of the target population through linkages with public and private sector financial institutes to avail various schemes and subsidies. Six, non-HIV women in the mixed groups play an important role in improving the morale and social status of HIV women and bridging with the community.
How have you had to adapt to ensure your work with people living with HIV wasn’t jeopardized during the pandemic?
We’ve played an important role in delivering antiretroviral therapy to people who are not able to collect it themselves. We’ve also established online consultations and support services to help PLHIV [people living with HIV] to deal with their psychosocial and economic problems. We are sure these groups will emerge as their own platforms in providing psychosocial and economical and health services in the longer term.
At YPS, we are creating and adopting new opportunities and evolving innovative practices to continue our work with the people living with and affected by HIV/AIDS. Our project is proving to be one way [of] tackling HIV stigma and discrimination and helps … in ending HIV/AIDS in India. However, these groups need extended support for a year or two, as they are in the emerging stage.
And over the past year, are there any lessons that you've learned around the continuation of HIV programs?
Remote working has become the new normal. We’ve learned a lot of lessons from COVID-19. … Limitations on movement have meant a transfer of responsibilities and decision-making to local partners.
We also now have created more flexible collaborative leadership and management and a long-term plan. First, this involves better communicating with funders on current requirements and the implications for the medium and long term. Second, we’ll use social media to build and strengthen the narrative around the positive impact of nonprofits in society. Third, we’ll connect with funders and partners to diversify funding sources and seek long-term support. We also plan to update strategies and operational priorities in line with technology to enable remote work.
As we emerge from the COVID-19 pandemic and as YPS continues to work with the people infected and affected by HIV/AIDS, what will it take to build back better and end HIV?
Socioeconomic strategies are more likely to achieve the goals of attracting community responses that HIV/AIDS is no longer an issue of “infected or affected” but [that] everyone is concerned. This is the main focus of this intervention, which can be achieved through mixed women microcredit support groups.
Sustainable HIV/AIDS care and support programs usually require two major categories of support: formal and informal. Formal social support [is] provided by health care and social service facilities. Informal social support originates from family, friends, and other community organizations.
YPS is a Gilead Asia Pacific Rainbow Grant recipient. To read more about its work and the work of other grantees, click here.