Sickle Cell Disease (SCD) is an inherited blood disorder, which is addressed primarily as a biomedical condition. But the experience of SCD is not just physical for those who have it; it is also profoundly social, psychological, and gendered. The debilitating pain of SCD, compounded by the absence of support beyond clinical treatment, profoundly shapes everyday life—particularly for those situated within marginalised caste, class, and gender contexts.
Sama Resource Group for Women and Health conducted a state-level workshop titled Sickle Cell Disease: A Social & Gendered Issue and Perspectives on July 25, 2025, at Raipur, Chhattisgarh, with some of these concerns at its core. The workshop was part of Sama’s ongoing engagement with SCD through a reproductive and disability justice framework.
Over the past year, Sama has been working closely with communities, health practitioners, and civil society organisations in Chhattisgarh to understand the lived experiences of people with SCD. Conversations with persons living with SCD and their caregivers reveal a consistent concern: beyond medical treatment, counselling, psychosocial support, and community awareness remain significantly underdeveloped. Strengthening these areas is essential to address the stigma, fear, misinformation, and discrimination that continue to shape the lives of people with SCD.
Many people living with SCD continue to experience untreated pain, interrupted education and livelihoods, social exclusion, and significant mental health distress because of a lack of spaces to share and discuss their experiences freely.
The workshop brought together 25 participants, including women and men with lived experience of SCD, representatives of Community Based Organisations (CBOs), Mitanins, Mitanin trainers, public health experts, researchers, and members of patient support groups such as Sickle Sangwari and Jan Swasthya Sahyog (JSS). By centring community voices and patient narratives, the workshop created a space to collectively reflect on how SCD is experienced within families, marriages, schools, workplaces, and healthcare systems.
A key focus of the workshop was myth-busting and building accessible understanding of SCD. Participants discussed how lack of information in local languages has allowed harmful myths to persist. While the National Sickle Cell Anaemia Elimination Mission launched by the Government of India in 2023 focuses on mass screening for identifying persons with SCD, there still remain huge gaps in conducting confirmatory tests for SCD. Moreover, there is minimal public awareness about what SCD entails and the kinds of care and support available to those living with the condition. As a result, existing stigma is further reinforced, making it even more difficult for people to seek timely support. Bridging this gap in knowledge and awareness about SCD was therefore one of the central objectives of the workshop.
During the introductory session, Dr Deepti Sidar from Sangwari and later, Panjak Tiwari from JSS, clarified some of this foundational information for the participants about SCD. The sessions clarified the genetic basis of SCD, distinguished between SCD and sickle cell trait, and discussed both the possibilities and limitations of available treatments, while also addressing common myths. Participants engaged actively, sharing the stigma and misconceptions they themselves had experienced.
These conversations created a space for mutual learning and clarification. Participants were able to reflect on new insights, resolve doubts, and consider how to carry this knowledge back to their communities—as CBO leaders, persons living with SCD, community health practitioners, and activists working on gender, health, youth leadership, and rights. The discussions also highlighted an urgent need for sustained, community-rooted awareness efforts to address SCD.
The workshop also foregrounded the gendered dimensions of SCD. Women and adolescent girls from marginalised communities are more likely to experience stigma and prejudice in marital, family, and even healthcare contexts. This increases their vulnerability to sexual and reproductive health problems and gender-based violence (GBV). Some participants shared testimonies of women being blamed for ‘bringing’ SCD into their families, denied care, their chronic pain disregarded, abandoned for passing the disease to their child and even struggling to access medications for SCD in certain cases. The experiences of women and girls living with SCD are inseparable from broader structures of patriarchy, caste inequality, and GBV.
Access to disability justice and entitlements was another very important theme of discussion during this workshop. While SCD is recognised under the Rights of Persons with Disabilities (RPWD) Act, 2016, participants shared cases of severe administrative barriers in obtaining disability certificates. Trained health workers like mitanins also reported administrative delays and a lack of clarity around procedures. Vishnu Gupta, a public health professional who has been working on SCD in Chhattisgarh across various spaces, shared the landscape of disability access vis-a-vis SCD within Chhattisgarh and also addressed some of the challenges and confusions shared by the participants. These conversations highlighted how systematic barriers deny people with SCD access to enjoy their social entitlement and rights to the fullest, increase economic vulnerability, and exacerbate mental stress.
Mental distress associated with SCD—both as a result of experiencing the disease and also the systematic barriers—emerged as a critical yet neglected concern. Participants shared experiences of how chronic pain, repeated hospitalisations, stigma, and social isolation have severe psychological impacts on people living with SCD. Anju Khewar, a community health expert, also highlighted the near absence of mental health support within the existing SCD programmes. This was identified as a major gap even during Sama’s previous National Roundtable meetings on SCD.
Across sessions, participants’ experiences consistently emphasised the urgent need to strengthen awareness about SCD as well as build support for people living with SCD as well as their caregivers. Peer-led support groups and CBOs working within communities were recognised as crucial spaces for solidarity, shared learning, and psychosocial support. The workshop concluded with some collective recommendations, including the need for gender-sensitive counselling within all SCD programmes, availability of information in regional languages, and simplified disability certification processes. The discussions of the workshop explore a range of related issues in depth.
The state-level workshop aimed to centre experiences of SCD as a social and gendered issue while bringing together people working on SCD within the communities in Chhattisgarh. It opened an important space for dialogue on navigating care and support within the health system and strengthening complementary systems of support for people living with SCD. For Sama Resource Group for Women and Health, this work is part of a broader commitment to reframing health as a question of rights, equity, and collective responsibility.