VIJAYAWADA: The State government is preparing a new policy framework to support patients suffering from rare diseases, ensuring both medical care and financial assistance.
Health Minister Y Satya Kumar Yadav announced that referral centres are being planned at Vizag, Kurnool, and Tirupati, while Vijayawada’s Siddhartha Government Medical College is under consideration to be designated as a Centre of Excellence. Speaking virtually at a workshop on ‘Rare Diseases – Diagnosis and Treatment’ held at Dr NTR University of Health Sciences, Vijayawada, he emphasised that no patient should be denied treatment due to financial constraints or the rarity of their condition.
The Minister revealed that in the first week of July, a special consultation will be organised with pharmaceutical companies to discuss drug production, distribution, and accessibility. He also announced plans to introduce a mandatory registry system for rare diseases, similar to the ICMR model, and to study Kerala’s successful implementation for adaptation in Andhra Pradesh.
Further, the State intends to launch Universal Neonatal Screening to detect rare conditions in newborns within the first few days of birth.
Health Secretary Suresh Kumar stressed the need for a strong clinical protocol, integration with digital health registries (ABHA ID), and training programs for medical staff.