VIJAYAWADA: In a major initiative aimed at supporting patients suffering from rare diseases, the State government is set to formulate a dedicated policy to provide free diagnostic tests, specialised treatment and financial assistance to affected families. The policy, being prepared in line with the National Policy for Rare Diseases-2021, would seek to provide much-needed relief to patients and their families, who often face enormous medical and financial challenges.
Health Minister Y Satya Kumar Yadav on Saturday announced that the initiative is being undertaken under the guidance of Chief Minister N Chandrababu Naidu and with the support and suggestions of IT and Education Minister Nara Lokesh. He expressed confidence that the Centre would extend all possible assistance to the State in implementing the proposed policy.
Satya Kumar Yadav said he had recently discussed the issue with Prime Minister Narendra Modi and officials of the Indian Council of Medical Research (ICMR) during his visit to New Delhi. The discussions focused on the formulation of a comprehensive policy, research into the causes of rare diseases and measures required to strengthen diagnosis and treatment facilities.
As part of the policy, the State plans to establish a Rare Diseases Registry, provide specialised training to doctors and create three referral centres along with a Centre of Excellence. Director of Medical Education Dr Vishnuvardhan said teaching hospitals in Visakhapatnam, Tirupati, Vijayawada and Kakinada are being considered for the facilities, with one of them likely to be upgraded as a Centre of Excellence.
The minister noted that patients suffering from conditions such as muscular dystrophy, spinal muscular atrophy, cystic fibrosis, lysosomal storage disorders and Fanconi anaemia often face severe hardships due to the high cost of treatment and lack of diagnostic facilities. The National Policy for Rare Diseases identifies 63 such conditions and classifies them into three groups based on treatment requirements.
