Transgender, intersex, disabled Indians faced exclusion in COVID-19 vaccine drive: Study

A study published in the peer-reviewed journal Vaccines (MDPI) has found that transgender, intersex, and disabled Indians faced systemic exclusion during the COVID-19 vaccination drive, despite a high willingness to be vaccinated.

The researchers followed a World Health Organisation (WHO) framework to examine behavioural and social drivers of vaccine uptake, and found that several issues, including inaccessible centres, digital exclusion, and mistrust in health systems, created a barrier for these communities.

The study

The paper, “Adapting the WHO BeSD COVID-19 Survey to Examine Behavioral and Social Drivers of Vaccine Uptake Among Transgender, Intersex, and Disability Communities in India,” was published on October 24.

It has been authored by Eesha Lavalekar, Sharin D’Souza, Harikeerthan Raghuram, Namdeo Dongare, Mohammed A Khan, Chaitanya Likhite, Gauri Mahajan, Pabitra Chowdhury, Aqsa Shaikh, Sunita Sheel Bandewar, Satendra Singh, and Anant Bhan.

The authors are affiliated with iHEAR (Initiative for Health Equity, Advocacy and Research), Sangath (Bhopal), Youth Voices Count (Philippines), Hamdard Institute of Medical Sciences and Research, (New Delhi), Forum for Medical Ethics Society (Mumbai), and the University College of Medical Sciences, (Delhi).

Also Read: No link between Covid vaccine and heart attacks: Karnataka govt panel report

The study surveyed 220 participants from transgender and gender-diverse (TGD) and disability communities across Maharashtra, Madhya Pradesh, Uttar Pradesh, and Delhi. The study period effectively spanned from 2021 to 2024.

Using a community-based participatory approach, the researchers adapted the WHO’s Behavioural and Social Drivers (BeSD) framework to understand vaccine access and acceptance among these marginalised groups.

High vaccine uptake among trans participants

Sharin D’Souza from iHEAR, one of the authors of the study, said people from the transgender, intersex, and disabled communities were involved in creating the questions and conducting the interviews.

“People who are not from the community, their viewpoint of how they design a survey or a questionnaire would be very different from somebody from the community who would know the cultural sensitivities that are required to conduct something like that… The idea was to get community perspectives on the process of the research, so it's aligned with community priorities. Communities can take ownership of some of this data and can be the people producing the knowledge, and not just be legislated upon,” she told The Federal.

Also Read: No link with Covid vaccines, says Serum Institute on Hassan cardiac deaths 8

The findings overturn common assumptions about vaccine hesitancy. The researchers found that 70 per cent of transgender participants wanted the vaccine as soon as it was available, and over 81 per cent even received it within six months of rollout.

Vaccine safety concerns

However, the study notes that confidence in vaccine safety “reflects a more layered story”.

“While nearly three-quarters (72 per cent) felt moderately or highly confident in the vaccine’s safety overall, this confidence dropped sharply when linked to gender-affirming care. Only 41 per cent felt confident that vaccination was safe in relation to hormone therapy or other gender-affirming treatments. This reflects a unique concern within the TGD community: fear that the vaccine might interfere with vital ongoing treatments like HRT, gender-affirming surgeries, or antiretroviral therapy,” it says.

Aqsa Shaikh, one of the authors, said she was managing a vaccination centre at the time and there were “numerous questions” around it.

“They would ask if they can take it (the vaccine) along with their existing medications… In terms of disability, many people have autoimmune diseases, who have fibromyalgia or other forms of muscle diseases. They were also very concerned about taking the vaccines. Because you have an autoimmune disease and the vaccines also work on your immune system. But there was no data available,” she said.

Deep structural barriers

The study also finds that enthusiasm alone could not overcome deep structural barriers.

“The TGD community reported documentation mismatches and mistrust in health systems. People with disabilities reported mobility challenges, escort dependence, financial challenges, and variable accessibility at vaccination sites. Both groups faced digital exclusion, received inadequate information that did not address their specific needs, and experienced inconsistent implementation of inclusive policies,” the study notes.

Shaikh said one of the issues was with the "dead name" – a transgender person’s birthname that they have rejected as part of their gender transition.

“All the registrations were happening through the COVID portal, and people had to use some kind of a national ID to register for the vaccination slot. And there were dead names of people on that as a trans person. Naturally, there would be an issue because you want it in your name, or you're getting it in your dead name. Or when you go and present as a woman, but your ID says you're a man. The staff is not trained on how to address these circumstances,” she said.

Stigma and mistrust pervasive

The researchers found that stigma and mistrust, rooted in long-standing discrimination within India’s healthcare systems, remained pervasive. More than half (55 per cent) of transgender participants reported facing stigma in healthcare settings, and 77 per cent “expected it to happen again”. Only 48 per cent of transgender respondents said they trusted the healthcare system.

Also Read: COVID deaths under-reported: Gujarat tops; Kerala accurate, says govt data

Digital exclusion further compounded access problems. The CoWIN online registration portal proved inaccessible to many, particularly those with visual impairments or limited digital literacy, according to the study.

“Wheelchair users faced inaccessible centres, blind individuals struggled to navigate the CoWIN platform, and deaf people were excluded from critical information due to the absence of sign language interpreters. Moreover, the National Expert Group on Vaccine Administration for COVID-19 (NEGVAC) lacked representation from health professionals with disabilities,” said Satendra Singh, one of the authors.

Call for inclusive public health policies

Despite these challenges, the researchers found strong community and social motivation for vaccination. Among transgender respondents, 79.2 per cent said they followed the guidance of dera or community leaders, who played a critical role in decision-making. Family and caregiver influence was also significant: 83 per cent of transgender participants and 92.2 per cent of people with disabilities said family members affected their decision to be vaccinated.

The researchers emphasised that vaccine hesitancy is a mischaracterisation, and that systemic design flaws, not unwillingness, were the real drivers of inequity. They called for integrating gender-affirming and disability-inclusive protocols into all public health programmes, particularly as India rolls out new adult vaccines for diseases like HPV, TB, and HIV.

They also urged policymakers to improve digital and physical accessibility, train health workers to reduce stigma, collaborate with community organisations, and include intersex and other marginalised voices in future immunisation planning.