Clear, correct information from trustworthy sources is the most critical input that can drive people to protect themselves and was the input in large deficit during the pandemic. In this story, Dhanalakshmi, a sex worker and Person Living with HIV (PLHIV), shared her perspective on how people living with a chronic condition like HIV received confusing, often fake messages concerning the safety of vaccinations for people on ART. They were reluctant to approach the health services for fear of stigma. They had no one to turn to for advice.
The community-based organisations with whom these groups had close connections and a bond of trust made it their priority to provide correct information and support them in making the right choices regarding their health. They further ensured that access barriers such as digital illiteracy were removed by organising special vaccination camps for women and supporting them through registration. The CBOs could keep the communities based on the solid trust capital built. Their engagement further strengthened that trust.
Swathi Mahila Sangha (SMS) and its extensive grassroots-level network played a pivotal role in reaching out to 6,000 members via telecare to deliver telehealth consultations, counselling, medicine, and social protection services. A highlight of their work during COVID-19 was distributing medication for diabetes, hypertension, cardiac-related issues, thyroid, etc., to women living with chronic conditions. Community leaders would catch up daily to discuss and brainstorm actions on real issues and provide expeditious support to people in need.
During discussions post the vaccine’s approval for adults, the leaders recognised that PLHIV was hesitant to get jabbed because of the absence of clear information on the safety of vaccines for those on ART. Fake news from sources like WhatsApp and Facebook and conversations with unaware community members fanned their hesitancy.
The stigma and silence of PLHIV prevented them from reaching out for information. The urgent need was to facilitate credible information to the community about their condition through reliable information sources. Dhanalakshmi recalls, “I only got to know of my HIV-positive status when I got a blood test during my pregnancy. My medical counsellor at the time connected me to SMS, with whom I’ve been in touch ever since.”
For many women like her, the telephonic and face-to-face group sessions conducted by SMS were their go-to platform for COVID-19-related information. “The news on TV covered daily death tolls and vaccine supply. But no one spoke about how the vaccine would affect someone like me who is HIV-positive. There was a lot of confusion in our community, and people were worried about the risk of the vaccine’s side effects. But the team at SMS was very informative and helpful. Their support was the sole reason I felt confident about getting vaccinated,” she states.
Convinced by the knowledge and trust of SMS volunteers, Dhanalakshmi finally took the life-saving vaccine shot from an SMS-organised camp in June 2021. “I will get my children vaccinated as soon as vaccines are available for that age group,” she committed.
A pivotal hindrance to vaccine accessibility was the inability of the women to use mobile platforms to register and book slots. Sathyaprema, a woman in sex work, reported that her biggest challenge was getting herself registered despite taking the vaccine. She overcame that barrier with the support of SMS. Recognising the frequency of this complaint among community members, SMS conducted vaccination camps where the registration of the beneficiary was handled by SMS. They ensured that women who did not have access to vaccine registration or digital infrastructure know-how were not left out. Instances like these highlight the gaps in communication regarding critical medical information, particularly when conveying it to at-risk and marginalised communities like PLHIV. SMS leveraged its connection to the community via its prior work to build on its formidable trust capital, allowing them to address the community’s concerns.