On 4 July 2025, Sama Resource Group for Women and Health hosted a roundtable meeting in New Delhi titled Amplifying Psychosocial Health and Disability Justice in the Realm of Sickle Cell Disease. This was a follow-up to earlier conversations, research, and collective reflections on Sickle Cell Disease (SCD) that Sama has been having over the years. The aim of this roundtable was to emphasise the importance of centring psychosocial health and disability justice as core concerns in responses to SCD.
Earlier discourses had clearly revealed the inability of biomedical and programmatic interventions alone to address the lived realities of people who live with SCD, especially when experiences of care, stigma, and exclusion are shaped by gender, caste, and other structural inequities. Thus, the 2024 roundtable, Interrogating Sickle Cell Disease as a Public Health and Reproductive Justice Issue, went beyond simply acknowledging these intersections. It critically examined how they are understood, addressed, and put into practice across communities, health systems, and policy frameworks.
47 people from eight Indian states participated in the July 2025 roundtable, in addition to those who joined virtually from Nepal, Chhattisgarh, and Karnataka. They came from diverse backgrounds and included healthcare providers, patient groups, academics, feminists and public health researchers, lawyers, representatives of government bodies, and the World Health Organization (WHO).
The discussions were structured across three thematic panels to comprehensively engage with the interlinkages between psychosocial health, disability justice, and SCD. Following is a brief summary of the discussions and recommendations.
Focalising Psychosocial Health: Insights from Community Experience
Speakers: Adsa and Susheela (Sama’s experiences from the field), Anju Khewar (Community health work expert, Chhattisgarh), Gautam Dongre (NASCO) and Daulat Ram Kashyap (Astha Samiti, CBO, Chhattisgarh).
Moderated by: Rohini Kandhari (Independent researcher) and Sneha Banerjee (University of Hyderabad)
The panel opened with community voices from the Sama team’s video, centring the lived experiences of women with SCD, particularly around pain, motherhood, and mental health. The invisibility of pain, and its frequent dismissal when expressed by women, adds another layer of marginalisation. This dismissal is rooted in gendered and caste-based biases, with women often labelled as lazy or exaggerating when their symptoms prevent them from fulfilling household roles, deepening psychological distress and forcing many to suffer in silence.
Rohini, drawing on her experience with multiple sclerosis, highlighted how chronic, invisible illnesses occupy a lower rung in the hierarchy of recognised suffering and how women’s pain is systematically delegitimised across families, institutions, and legal systems.The panel also examined how stigma, shaped by caste-patriarchy, leads to women with SCD being blamed for the disease, deemed “unfit” for marriage or motherhood, and sometimes abandoned, resulting in social exclusion and diminished self-worth. Questions of who can marry and whether one should have children continue to resurface, placing SCD squarely within broader conversations about reproductive justice.
Panellists stressed that while public discourse on SCD may seem recent, the inequities shaping how it is experienced are longstanding and mirror patterns seen across other public health issues — familiar to those working in gender justice, feminism, and patient rights.
Meanwhile, mass screening without counselling or referral systems has generated confusion and fear. Limited access to affordable treatment, including hydroxyurea, reveals a stark gap between identification and sustained, empathetic care.
(ii-a) Framing Disability Justice: Reflections and Reiterations, Part I
Speakers: Laxmi Murthy (Journalist & Researcher, Bangalore), Renu Addlakha (Centre for Women’s Development Studies, New Delhi), Dr. Veronica Arora (Genomics doctor, Sir Ganga Ram Hospital, Delhi), Dr. Madhulika Kabra (ICMR), Sarojini N. (Sama Resource Group for Women and Health)
Moderated by: Chayanika Shah (Educator, writer, researcher, and feminist activist)
Chayanika opened the discussion by critiquing the tendency to frame SCD purely through a biomedical lens, arguing that such an approach neglects the social realities like stigma, inequality, and normative expectations that shape how disability is lived. She called for reflection on how disability discourse has evolved to recognise these intersections.
Laxmi drew lessons from feminist engagements with the Pre-Conception and Pre-Natal Diagnostic Techniques Act, 1994 (PC & PNDT Act). Early interventions focused on regulating technologies such as amniocentesis, chorionic villus sampling (CVS), and ultrasound to curb sex determination. However, while opposing female foeticide, it was not fully interrogated how society assigns unequal value to different lives, including those with disabilities. The shared logic behind eliminating female foetuses and foetuses with genetic conditions remained underexamined. This gap is instructive today, as SCD prevention strategies risk pathologising communities.
Renu noted that SCD remains marginal within disability justice spaces, which continue to prioritise traditionally recognised disabilities. She emphasised that SCD pain is both biological and socially mediated; its invisible and episodic nature often leads to dismissal. Even carrier status carries psychosocial burdens, producing stigma and anxiety about reproduction.
Sarojini examined reproductive governance under India’s SCD Mission, which frames “elimination” as a goal. Guidelines promote preconception counselling and prenatal diagnosis (PND) to “reduce” births of affected children, raising concerns about directive counselling and eugenic undertones. Given SCD’s wide clinical spectrum, categorising it as a foetal abnormality flattens complexity. Access to Chorionic Villus Sampling (CVS) and amniocentesis is limited and costly, with services scarce in states like Chhattisgarh. Gendered pressures, limited information, and men’s reluctance to test further constrain women’s autonomy. Since PND cannot predict severity, the language of counselling may implicitly steer decisions toward termination.
Dr. Veronica stressed that counselling must remain non-directive and clarify shared genetic responsibility, though women are often blamed. Advanced treatments and reproductive technologies exist but remain inaccessible for most families.
In contrast, Dr. Yogesh highlighted the importance of newborn screening, noting that many parents continue pregnancies despite diagnosis. Early detection enables timely treatment and better outcomes, as illustrated by a participant’s experience of late diagnosis and avoidable complications.
Concluding, Chayanika challenged narrow notions of “normal”, arguing that reproductive decisions are shaped by stigma and expectations of perfection. Discussions on SCD must prioritise care, empathy, and inclusion over technological “solutions”, and confront the social values that determine which lives are deemed worthy.
(ii-b) Framing Disability Justice: Reflections and Reiterations, Part II
Speakers: Shampa Sengupta (Sruti Disability Rights Centre, Kolkata) Vishnu Gupta (Chhattisgarh), Lila (Sama Resource Group for Women and Health)
Moderated by: Muralidharan (National Platform for the Rights of the Disabled)
This panel highlighted discrepancies between legal recognition and lived realities by examining SCD through the lens of disability rights, the right to health, and reproductive governance. Despite the fact that SCD is recognised by India’s Rights of Persons with Disabilities Act, 2016, Shampa pointed out two significant gaps: the absence of meaningful reasonable accommodation and structured pain management. While the law guarantees the right to health, pain relief and flexible provisions in education or employment remain poorly addressed for a condition that is episodic and often invisible.
She also reflected on reproductive governance, noting tensions between marriage incentive schemes in several states and SCD messaging that discourages marriage or reproduction. These contradictions complicate efforts to align prevention discourse with disability justice.
The panel underscored significant barriers in accessing disability certificates. The 40% disability threshold relies heavily on biomedical criteria, overlooking quality of life. Lengthy documentation, centralised medical boards, and low awareness further limit access. However, experiences from Durg showed that peer support, collaboration with officials, and awareness of updated guidelines enabled 130 individuals to secure certification, demonstrating that implementation gaps, not legal absence, remain the central challenge.
(iii-a) Health Systems: Gaps, Interventions, and Policy Considerations, Part I
Speakers: Dr. Yogesh Jain (Doctor, SCD and public health expert), Dr. Sundararaman T. (Health policy expert), Devesh Singh (Sangwari, Chhattisgarh), Lila (Sama Resource Group for Women and Health)
Moderated by: Prof. Arima Mishra (Azim Premji University), Dr. Amar Jesani (Independent researcher; Indian Journal of Medical Ethics)
The panel explored ethical tensions in SCD policy, questioning whether current approaches prioritise mass screening over meaningful, sustained care. Dr. Amar critiqued how “prevention” often shifts toward discouraging births among those with SCD, echoing eugenic undertones. While large-scale screening identifies individuals, far less attention is given to long-term treatment, psychosocial support, and combating stigma, isolation, and discrimination.
Dr. Yogesh highlighted that although 5.83 crore people have reportedly been screened, there is little clarity on how many receive treatment. Screening enables early diagnosis but does not prevent SCD. Without confirmatory testing, counselling, and assured care pathways, it risks labelling individuals without support. He questioned the ethics of premarital and community screening framed around preventing births, noting that newborn screening remains the global standard, yet antenatal screening is prioritised in India.
Dr. Sundaraman underscored persistent treatment gaps. Despite decades of availability, hydroxyurea access remains uneven, while adolescent screening and premarital counselling receive greater emphasis than consistent care. Essential newborn interventions, such as vaccination, folic acid, and early treatment, could have been scaled earlier.
Lila pointed to weak pregnancy management despite recent WHO guidelines, inconsistent hydroxyurea supply, and overreliance on transfusion. Chronic pain and mental distress remain poorly addressed. Devesh described efforts to strengthen training, awareness, and peer support. The panel concluded that ethical SCD policy must prioritise accessible, holistic care over identification alone.
(iii-b) Health Systems: Policy Considerations and Recommendations
Speakers: Mr Ramesh Chandrawal (Ministry of Tribal Affairs), Dr Yutaro Setoya (World Health Organisation, India Office), Vikash Keshri (Medical doctor, Public health researcher), Adsa (Sama Resource Group for Women and Health)
Moderated by: Sandhya Srinivasan (Journalist and researcher) and Manjulika Vaz (St John’s Research Institute, Bangalore)
The panel reviewed current SCD initiatives and identified priorities for improvement. These included new clinical guidelines issued by the WHO on managing SCD during pregnancy, awareness campaigns led by India’s Ministry of Tribal Affairs under the Dharti ABHA Janjatiya Gram Utkarsh Abhiyan, and the proposed Centre of Competence under the National Mission to eliminate SCD by 2047.
Speakers emphasised that within WHO, responsibility for SCD is still fragmented between maternal and child health and non-communicable disease divisions, which reflects its long-standing status as an “orphan” condition with limited visibility and inconsistent prioritisation. Although new guidelines strengthen clinical care, emphasising supplementation, pain management, and thrombosis prevention, psychosocial support remains underdeveloped. Concerns were also raised about large-scale screening without established procedures for follow-up, counselling, and treatment. The panel stressed that screening must be matched with accessible, quality care, aligned with ICMR and global standards, to avoid identification without meaningful intervention.
Recommendations and Action Plan
The roundtable closed by formulating certain significant recommendations and highlighting priority areas for treating SCD keeping mental health, stigma, gender, and disability at the centre. Among these were the necessity of ongoing discussions on stigma at the community level, especially as it intersects with autonomy, consent, violence, and decision-making. The participants placed a strong emphasis on making disability certification more accessible by enhancing information and empowering individuals to assert their rights. It was suggested that peer support groups be formed in order to address mental health issues and provide areas for advocacy and group assistance. Critical steps that were identified also included strengthening community participation and improving the capacity of primary and community health centres to deliver quality care. Participants also emphasised that clear and accessible care pathways should be established within SCD management and that treatment and care must take precedence over mass screening.
A more detailed report on this roundtable is available upon request. Please write to sama.womenshealth@gmail.com or sama4health@gmail.com to receive a copy or to learn more.