Haryana starts process to identify patients suffering from rare diseases for monthly pension

economictimes.indiatimes.com:

Directives have been issued to all medical officers at primary healthcare centers, instructing them to compile a roster of patients suffering from 55 rare diseases, including conditions such as Spinal Muscular Atrophy (SMA), Duchenne Muscular Dystrophy (DMD), and Pompe Disease within their respective regions. This compilation must then be uploaded onto the internal portal of the state's health department. This effort will enable eligible patients to access monthly financial assistance.

Virender Yadav, the Chief Medical Officer of Gurgaon, told ToI: «Health workers have undergone training to recognize and verify such patients. Verification and identification of patients in stages 3 and 4 of cancer are underway by all PHCs, ASHA workers, and ANMs. Meanwhile, new patients will be authenticated through the nine government medical colleges scattered across the state.

An existing patient list is already available for thalassemia and hemophilia cases. Their particulars will be updated in the portal. For new cases of rare diseases, we will forward the documentation to AIIMS Delhi or PGIMER Chandigarh.

This financial assistance will be available to patients with a family annual income of less than three lakh.» According to state government data, Haryana is home to approximately 3,000 individuals afflicted with thalassemia and hemophilia, 4,000 with stage-III and stage-IV cancer, and roughly 1,000 individuals suffering from 55 other rare diseases—each eligible for the pension scheme. It is essential to note that these figures are dynamic and subject to alteration upon the completion of the identification and verification process. The World Health Organization (WHO) defines a rare disease as a debilitating, lifelong medical