AP to roll out rare disease policy, free treatment support

Metro India News | AMARAVATI :

In a major healthcare initiative, the Andhra Pradesh government is working on a comprehensive policy aimed at providing free diagnosis, treatment and financial assistance to patients suffering from rare diseases. The policy is being formulated under the guidance of Chief Minister N. Chandrababu Naidu, with support from HRD and IT Minister Nara Lokesh, to ease the burden on families facing enormous medical expenses.

The proposed framework will be aligned with the National Policy for Rare Diseases (NPRD)-2021 and is expected to offer free diagnostic services, specialized treatment facilities, referral centres and a state-level Rare Diseases Registry. It will also focus on strengthening medical expertise through training programmes for healthcare professionals across the state.

Health Minister Satyakumar Yadav said discussions on rare disease management were recently held with Prime Minister Narendra Modi and officials of the Indian Council of Medical Research (ICMR) in New Delhi. The talks focused on policy formulation, research, early diagnosis and long-term support for affected patients and their families.

Officials noted that rare disease patients often face delayed diagnosis, lack of specialized testing facilities and prohibitively high treatment costs. Many children affected by progressive disorders become dependent on lifelong medical care.

The government is considering establishing three referral centres and one Centre of Excellence, with teaching hospitals in Visakhapatnam, Vijayawada, Tirupati and Kakinada being evaluated for the role. An expert committee comprising specialists in paediatrics, neurology, genetics and medical research has already been constituted.

A stakeholder consultation meeting is scheduled for June 24. The government is also studying successful models implemented in Kerala and NIMS Hyderabad. Officials aim to finalize the policy and begin implementation before the end of 2026.