Govt drive to track patients suffering from rare diseases kicked off in city

Gurgaon: The health department has started the process of identifying patients suffering from rare diseases in the district this week.

The move comes after the state government announced in May that a monthly pension of Rs 2,750 be provided to patients suffering from rare diseases.

All medical officers of the primary health care centres are directed to make a list of patients suffering from 55 rare diseases including Spinal Muscular Atrophy (SMA), Duchenne Muscular Dystrophy (DMD) and Pompe Disease in their respective areas and to upload it onto the state’s health department internal portal. This will then enable these patients to get monthly financial assistance.

“The health workers are now trained to identify and verify such patients. All PHCs, ASHA workers and ANMs are working to verify and identify patients who are suffering from stage 3 and 4 cancer, while new patients will be verified from the nine government medical colleges across the state. We already have a list of patients for thalassemia and haemophilia. We will update their details in the portal and for fresh rare disease cases we will send documents to AIIMS Delhi or PGIMER Chandigarh. These patients with a family annual income of less than three lakh will avail the financial assistance,” said Virender Yadav, chief medical officer, Gurgaon.

According to the state government, Haryana has about 3,000 people who are suffering from thalassemia and haemophilia, 4,000 people who have stage-III and stage-IV cancer and about 1,000 people who suffer from 55 other rare diseases, who will receive this pension.

These figures, however, are dynamic and can change after the identification and verification process is completed.

WHO defines rare disease as a debilitating lifelong medical condition which has prevalence of less than 1 in 1,000. However, due to non-availability of a national registry, no definition has been demarcated in India.

Apart from state government assistance, the Ministry of Health and Family Welfare, Government of India is providing financial assistance for patients suffering with any of the designated rare diseases, at chosen centres of excellence, up to Rs 50 lakh per patient under the National Policy for Rare Diseases.