A.P. to strengthen care for rare disease patients, says Health Minister

The Union government brought out the National Policy for Rare Diseases (NPRD) in 2021, and it is high time Andhra Pradesh implemented the policy, Minister for Health, Medical and Family Welfare Satya Kumar Yadav said on Wednesday.

Participating virtually in the ‘Stakeholder Conference on Rare Diseases Care and Draft Policy Consultation in Andhra Pradesh’, organised by the Directorate of Medical Education (DME) at Dr. NTR University of Health Sciences in Vijayawada, the Minister said the government was committed to ensuring that no patient suffered due to lack of access to treatment or financial support.

While more than 7,000 rare diseases have been identified worldwide, the NPRD-2021 recognises 63 of them. The Union government provides financial assistance of up to ₹50 lakh to patients suffering from any of the recognised diseases when treatment is taken at notified Centres of Excellence (CoEs). As Andhra Pradesh does not currently have a CoE, patients are forced to travel to Hyderabad or Bengaluru for treatment.

Mr. Satya Kumar Yadav said the State government was considering setting up Andhra Pradesh’s first CoE at the Government General Hospital in Vijayawada. Referral centres are also proposed in Kurnool, Tirupati and Visakhapatnam.

Stressing the need for a registry to assess the burden of rare diseases in the State, the Minister said greater focus should be placed on early diagnosis, specialised treatment and compassionate care. He said a meeting with pharmaceutical companies would be held in July to discuss issues related to the production and distribution of medicines used for treating rare diseases. He suggested that pharmaceutical companies be encouraged to extend financial and other support to patients.

Highlighting the importance of early diagnosis, the Minister said the government was planning to introduce Universal Neonatal Screening to facilitate the early detection of rare diseases in newborns.

Addressing the gathering, Health Secretary S. Suresh Kumar said linking rare disease patients with the Ayushman Bharat Digital Mission would help track treatment and improve patient care. He also emphasised the need to raise public awareness about rare diseases to enable timely diagnosis and intervention.

NGOs, caregivers, patients living with rare diseases and medical experts from across the country welcomed the government’s initiative to implement the policy and offered suggestions.

DME A. Vishnu Vardhan, Additional Director of Medical Education V. Radhika Reddy and others were present.