Workshop Highlights Treatment Options and Patient Challenges
Mumbai: In observance of Rare Disease Month, around 130 doctors and several rare disease patients attended a two-day workshop organized by the Union Health Ministry at KEM Hospital. The event focused on treatment options under the National Policy for Rare Diseases (NPRD) and the difficulties patients face in accessing care.
Financial Aid for Rare Disease Treatment
Under the NPRD, 63 treatable rare diseases are eligible for a one-time financial assistance of ₹50 lakh, irrespective of socio-economic status. KEM Hospital, one of 11 Centres of Excellence (CoE) for rare diseases recognized by the ministry, refers diagnosed patients from its OPD to specialized departments for further care.
Challenges in Genetic Testing and Funding
“Genetic testing, costing at least ₹10,000, is mandatory for patient registration. While some can afford it, others risk being lost in the system. The social service department helps arrange funds, but delays are common since only a few specialties have dedicated support units,” said a doctor from the hospital.
Dr. Mamta Muranjan, nodal officer for rare diseases, pointed out that diagnostic costs ranging from ₹5,000 to ₹20,000 are justified when compared to treatment expenses, which can exceed ₹25 lakh annually. However, Suyog, a Gaucher disease survivor, emphasized that the financial support currently available remains insufficient.
— Eshan Kalyanikar
