AP To Frame Rare Disease Policy, Set Up Referral Centres: Satya

Andhra Pradesh is gearing up to launch its own comprehensive policy for rare diseases, a critical move announced by Health Minister Y Satya Kumar Yadav that includes establishing new referral centres and designating Vijayawada's Siddhartha Government Medical College as the state's first Centre of Excellence. This policy aims to ensure no patient is denied vital medical care or financial aid due to the rarity of their condition or economic constraints, addressing a significant healthcare gap in the state. The state's initiative comes in direct alignment with India's National Policy for Rare Diseases (NPRD) 2021, which provides financial assistance up to ₹50 lakh for treatments at notified Centres of Excellence. Previously, patients from Andhra Pradesh had to travel to cities like Hyderabad or Bengaluru for specialized rare disease treatment due to the lack of local facilities, highlighting the urgent need for this infrastructure. Health Secretary S. Suresh Kumar emphasized the importance of robust clinical protocols and integrating care with digital health registries like ABHA ID, reinforcing a broader national push for accessible and coordinated healthcare. Looking ahead, Minister Satya Kumar Yadav has scheduled a special consultation with pharmaceutical companies in the first week of July to tackle drug production and accessibility challenges. The state also plans to introduce a mandatory Rare Disease Registry, mirroring the Indian Council of Medical Research (ICMR) model, and will explore adapting Kerala's successful healthcare framework for rare diseases. Furthermore, a groundbreaking Universal Neonatal Screening program is on the horizon, aiming for early detection to transform outcomes for newborns with rare conditions.