Comprehensive policy for rare disease patients on the anvil

Metro India News | AMARAVATI

In an initiative aimed at providing medical and financial support to patients suffering from rare diseases, the Andhra Pradesh government is preparing a comprehensive Rare Diseases Policy. State Health, Medical and Family Welfare Minister Satya Kumar Yadav announced that the proposed policy would focus on early diagnosis, specialised treatment, patient care, and financial assistance for affected families.

Addressing a workshop on “Rare Diseases: Diagnosis, Treatment Pathways and Stakeholder Consultations” at Dr. NTR University of Health Sciences in Vijayawada on Wednesday, the minister said the government is examining the establishment of referral centres in Visakhapatnam, Kurnool and Tirupati. He also revealed that the Government General Hospital in Vijayawada is being considered for recognition as a Centre of Excellence for rare disease treatment and research.

The minister stressed that no patient should be denied treatment due to the rarity of a disease or lack of financial resources. He said creating awareness among families, ensuring early detection and providing compassionate care were key priorities of the proposed policy.

As part of the initiative, the government plans to introduce a mandatory Rare Diseases Registry on the lines of the Indian Council of Medical Research (ICMR) system. A special consultation with pharmaceutical companies will also be organised in the first week of July to discuss the production, availability and affordability of medicines used in rare disease treatment.

Satya Kumar Yadav said Andhra Pradesh is studying Kerala’s successful rare disease model and may adopt suitable practices based on local requirements. He added that discussions have already been held with Prime Minister Narendra Modi regarding research and treatment support for rare disease patients, and that the Centre had responded positively. The minister also acknowledged the role of Education and IT Minister Nara Lokesh in accelerating consultations on the policy framework.

Health Secretary Suresh Kumar emphasized the need for a robust clinical protocol, specialised training for healthcare professionals and the formation of a multidisciplinary task force. He also proposed linking rare disease patients with the ABHA digital health registry to improve treatment tracking and healthcare delivery.

The government is also exploring the introduction of Universal Neonatal Screening to identify rare diseases at birth, with support from the Rashtriya Bal Swasthya Karyakram and 34 district-level early intervention centres across the state.