International Thalassemia Day: Shining a Spotlight on Care Initiatives
International Thalassemia Day served as a platform for Thalassemics India and Thalassemia Patients Advocacy Group to illuminate the state of Thalassemia management in India. Through a dynamic hybrid session, medical experts and patient advocates joined forces to discuss the challenges, progress, and initiatives shaping Thalassemia care and prevention.
A Confluence of Knowledge and Compassion
The hybrid session brought together a diverse array of voices, including Dr. Shubnum from CII Public Health Council and Dr. Smita Mahapatra, Associate Professor at SCB Medical College. This convergence of medical expertise and patient perspectives fostered an in-depth exploration of Thalassemia management strategies and government-led initiatives.
“Be Aware Share Care”: The Resounding Theme
“Be Aware Share Care,” the theme of this year’s International Thalassemia Day, encapsulated the essence of the discussions. Delving into the challenges faced by Thalassemia patients in developing countries, the session emphasized the pivotal role of strategic partnerships in driving prevention and care efforts.
Advocating for Patient-Centric Healthcare
Dr. Shubnum Singh, Principal Advisor Health Policy Confederation of Indian Industry (CII), underscored the importance of a participative approach to disease management. The focus, she asserted, should be on creating a patient-centered ecosystem, leveraging partnerships and knowledge dissemination.
Delhi’s Vision for Thalassemia Care and Prevention
Dr. Seema Kapoor, Nodal Officer, State Blood Cell, Govt. of NCT of Delhi, shed light on the capital city’s proactive stance on Thalassemia. Establishing patient registries, ensuring a steady supply of leucodepleted blood bags, and enhancing prenatal and antenatal centers are key elements of Delhi’s strategy.
WHO’s Global Patient Safety Agenda
Dr. Neelam Dhingra, Unit Head of Patient Safety Flagship at the World Health Organization, highlighted the critical role of International Thalassemia Day in engaging and empowering patients. Dr. Dhingra stressed WHO’s commitment to patient safety through open dialogue, policy involvement, and awareness.
National Health Missions: Driving Thalassemia Care Forward
Sh Harsh Mangla (IAS), Director, Ministry of Health & Family Welfare, Govt. Of India, shared insights into the National Health Missions’ dedication to Thalassemia care. Prenatal and newborn screening, unique patient IDs, and funding support for bone marrow transfusion underscore NHM’s commitment.
As International Thalassemia Day drew to a close, the event left a lasting impact, fortifying the resolve to enhance Thalassemia care, awareness, and collaboration in India.
