MERD India urgently calls upon the relevant agencies and stakeholders to implement the following measures to transform neonatal healthcare in our country:
Mandate National Newborn Screening: Implement a nationwide mandate for comprehensive screening that includes visible, functional, and metabolic birth defects.
Establish Mass Screening Infrastructure: Build and maintain the necessary facilities to support widespread and effective screening programs across all regions.
Create a National Newborn Screening Registry: Develop a centralized digital registry to track screening data, patient outcomes, and long-term health trends across India.
Enhance Treatment Infrastructure: Establish specialized facilities equipped to provide state-of-the-art treatment for Inborn Errors of Metabolism (IEMs), genetic disorders, and other rare diseases.
Improve Access to Orphan Drugs and Medical Diets: Streamline the importation of life-saving medicines and specialized medical diets. Furthermore, we must incentivize the domestic production of Indian-made medicines and dietary supplements to ensure they are affordable and readily available.
Expand Insurance Coverage: Genetic and rare diseases listed under the National Policy for Rare Diseases should be covered by health insurance, with coverage options beginning from the stage of pregnancy.
Ensure Patient Safety in Clinical Trials: While we commend the initiation of clinical trials for rare diseases, they must be conducted under the strictest safety protocols and overseen exclusively by qualified medical experts.
Establish Rare Disease Centers of Excellence: A dedicated Rare Disease Center should be established within the primary government hospital of every State and Union Territory. These centers will provide specialized care and serve as hubs for future clinical research.
We sincerely appeal for your support in these initiatives to ensure a healthier, safer future for every newborn in India.