Mumbai: On account of the Rare Disease Observance Month, around 130 doctors and a few rare disease patients attended a two-day workshop by the Union health ministry at KEM Hospital. The workshop focused on treatment options under the National Policy for Rare Diseases (NPRD) as well as the challenges that patients face.
Under the policy, 63 rare treatable disorders are approved to receive one-time financial assistance of Rs 50 lakh, irrespective of socio-economic status. At KEM, which is one of the 11 Centres of Excellence (CoE) for rare diseases recognised by the health ministry, many patients who are found to have a particular rare disease in its OPD are referred to specialty departments.
“Patients must undergo a genetic test, costing at least Rs 10,000, to be registered in the system. Those who can afford it proceed immediately, while others risk being lost in the system. They are referred to the social service department, which helps arrange funds, but delays are common mainly because only a couple of specialties have their own dedicated departments,” said a doctor from the hospital. Dr Mamta Muranjan, nodal officer for rare diseases, said the costs of Rs 5,000 to Rs 20,000 for diagnosis by genetic tests are justifiable when costs of treatment are considered—annual costs upwards of Rs 25 lakh for some diseases. Suyog, a Gaucher disease survivor, said the support is not enough. — Eshan Kalyanikar
