Stigma and bias erode wellbeing and exacerbate psychological harm, particularly for people from marginalised communities, especially women. Many with the disease are reluctant to reveal their status because of concerns about prejudice and criticism, often choosing to live in secrecy. Continue reading
Sama organised a one-day round table on 2nd July 2024 in Delhi, titled “Interrogating Sickle Cell Disease as a Public Health and Reproductive Justice Issue,” to deliberate on some critical issues on sickle cell disease (SCD) and share experiences from its field visits to Chhattisgarh for guidance on its future work on SCD. Here are some photographs of the round table. Continue reading
To deliberate on some critical issues on sickle cell disease (SCD), Sama organised a one-day round table on July 2, 2024, in Delhi to share observations from its field visits to Chhattisgarh for guidance on its future work on SCD. The round table, titled “Interrogating Sickle Cell Disease as a Public Health and Reproductive Justice Issue,” brought together doctors, health policy contributors, feminists, academics, and disability and public health activists to examine SCD from the perspective of patient rights and as a feminist public health issue through the lenses of reproductive justice and disability justice. Continue reading
Suraj, five, was sent to the district hospital in Nuapada, western Odisha, after being ill with a persistent fever. He and his family had to run from one hospital to another, some even 250 kilometres from their hamlet. Finally, when his haemoglobin electrophoresis tests revealed SCD, he was admitted as a patient and referred for blood transfusions. Suraj’s tale demonstrates the difficulty that people like Suraj, who come from disadvantaged tribal communities, experience in accessing basic healthcare and diagnostics. Continue reading
Challenges exist around heritable gene editing, its potential medical applications, ethical implications, and the need for regulatory mechanisms in the field. In March this year I spoke at the Third International Summit on Human Genome Editing, held in London, about “The Role of Civil Society and Culture in Fostering Public Engagement on the Ethics of Human Genome Editing.” Continue reading
