A recent paper that explored structural inequities in the access to, and uptake of, the Covid-19 vaccine among the disability, transgender and gender-diverse communities in India, has flagged several barriers that made it difficult for these communities to get vaccinated. The barriers included information and communication gaps, barriers in vaccine registration, transport and infrastructure among others, pointing to, the paper said, “longstanding and pervasive inequities within health and allied systems.”
”The paper, ‘Understanding structural inequities in Covid-19 vaccine access and uptake among disability, transgender and gender-diverse communities in India’ by Sharin D’souza et al of the Initiative for Health Equity, Advocacy and Research, Bhopal Hub, Sangath, Bhopal, along with other institutions, was published in ScienceDirect recently.
A total of 45 individuals were interviewed for the study from the transgender and disabled communities alongside health system representatives and other key stakeholders.
India had the world’s largest Covid-19 vaccination programme, rolled out in January 2021 and India’s vaccine acceptance rate was higher than that in many developed countries. The study found however, that by May 2021, when approximately 11.7% of the general population was vaccinated, the coverage among trans and gender diverse persons (TG) was only 5.22%. By November 2021, this rate was approximately 0.03% within the disability community.
“In India, the TGD and disability communities, both face a higher risk of neglect, violence and lack of family support. This, combined with stigma and discrimination marginalises both communities socio-economically and within the health system. Both communities have higher rates of unemployment, lack of education and poverty. Many of them are dependent on precarious employments such as begging (in both communities) and sex work (in the TGD community). Combined with poorer immune status linked to their disability, co-existing HIV infections and poorer health in general both communities were at a higher risk of COVID-19-related mortality necessitating early vaccination,” the study pointed out.
The study highlights four main themes with regard to barriers faced: structural neglect of disability and trans-specific information: how the vaccine would affect those who had medical conditions or those who had transitioned for instance, was a concern, signaling gaps in vaccine research and communication. This was compounded by the communities’ past, sometimes negative experiences with the healthcare system.
Procedural barriers, the second theme, included the digital inaccessibility of the vaccine registration platform CoWIN and the Aarogya Setu app, alongside other issues such as the mandatory requirement of identity documents for the TGD community.
The third theme was transport and infrastructural inaccessibility – some participants reported having to travel 20-30 km to a centre, the lack of transport during the lockdowns and the vaccine centres being inaccessible as well for many, not being able to get the home vaccine service.
The final theme looked at mistreatment by staff at vaccination centres including denial of services: participants highlighted a range of discriminatory and stigmatizing experiences.
Meenakshi B., member, Disability Rights Alliance, who filed a PIL in the Madras High Court in 2021 for better access to the vaccine for persons with disabilities, said that they were not categorised as a high-risk group for access to the vaccine.
“Apart from the impairment itself, persons with disabilities often have caregivers and may be in repeated contact with a number of people and hospitals – but this was not considered. We filed the PIL, and then, based on the judgement, managed to get access to the vaccine but there were multiple barriers: for instance, the vaccine centre in my locality was not accessible – the staff had to come out to my car and vaccinate me. Information was another huge issue: there were no inquiries made by any staff about any co-morbidities. Despite the Centre later releasing guidelines on how persons with disabilities needed to be cared for, this was not implemented. Home visits were very difficult to get: for those in Chennai city for instance, it was managed in collaboration with the Chennai Corporation but for others in the suburbs and for those in rural areas, this did not happen” she pointed out.
When it comes to public health, there has to be a system where outreach care is provided, and not just facility-based care, said K Srinath Reddy, distinguished professor of public health, Public Health Foundation of India. “Public health functionaries have to go to the person where necessary – the system has to initiate contact, rather than waiting for the person to come to the facility. This would also help in the monitoring of people who may have adverse effects and may not be able to travel back to the facility after a vaccine. The problem is, this hardly exists in our urban healthcare scenario,” he said. This system, he added, could be used for any persons who may have difficulties with mobility, transport, information or the ability to freely mix with other people without the fear of discrimination.”
When it comes to clinical trials, he said global best practice was to now have a diverse set of people studied – in terms of gender, ethnicity and disability among other diversities. “It is only when the trial is diverse that the health system can understand where problems and limitations lie and where special services may be required,” he pointed out.
