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

Vijayawada: The Andhra Pradesh government is preparing a policy for the treatment of rare diseases and plans to establish referral centres in Kurnool, Tirupati and Visakhapatnam.

Participating virtually in a conference on Rare Diseases Care and Draft Policy Consultation at Dr NTR University of Health Sciences on Wednesday, health minister Satya Kumar said the government was also examining a proposal to recognise a government hospital as a Centre of Excellence for rare disease treatment.

He said the government was committed to ensuring access to healthcare for patients suffering from rare diseases, irrespective of their financial status.

The minister stressed the need for greater awareness to facilitate early diagnosis and announced plans to hold a meeting with pharmaceutical companies in the first week of July to discuss the manufacture and distribution of medicines for rare diseases.

He also said the government planned to establish a registry system for diseases identified by the Indian Council of Medical Research (ICMR) and study Kerala's healthcare model for treating rare diseases.

Satya Kumar said Prime Minister Narendra Modi had responded positively when the issue of rare disease treatment and research was raised earlier.

The government is also exploring the introduction of a universal neonatal screening system to help detect rare diseases at an early stage. Efforts are under way to mobilise donor support to assist patients facing high treatment costs, he added.

Municipal administration principal secretary S. Suresh Kumar, who is also overseeing the Health Department, stressed the need for proper clinical protocols and suggested the creation of a task force comprising experts from various medical fields to guide treatment and policy implementation.