Haryana: Pension plan for patients suffering from 55 rare diseases unveiled

Chandigarh, December 17

The state government has rolled out a scheme for providing monthly pension to persons suffering from 55 rare diseases.

Can also draw social security pension

• Patients suffering from rare diseases to get monthly pension of Rs 2,750; only those having an annual family income of up to Rs 3 lakh to be eligible
• They can also draw benefits under other social security pension plans, besides this financial assistance
• The beneficiary must have been diagnosed as suffering from any of the 55 rare diseases by a “Centre of Excellence”
• Civil surgeons to issue “verification certificates” based on the “Centre of Excellence” diagnosis

The Financial Assistance to Persons Suffering from Rare Diseases Scheme entitles persons suffering from designated rare diseases to a monthly pension of Rs 2,750 (to be increased to Rs 3,000 next month).

A notification issued by Pankaj Aggarwal, Secretary, Social Justice, Empowerment, Welfare of Scheduled Castes and Backward Classes and Antyodaya (SEWA) Department, however, clarified that the benefit would only be available to the persons whose family income was less than Rs 3 lakh per annum.

“The financial assistance to the patients will be equivalent to the old-age pension (Rs 2,750). The assistance provided under the scheme will be in addition to the benefits available under other social security pension schemes,” the notification said.

Under the National Policy for Rare Diseases, 2021, the Ministry of Health and Family Welfare, Government of India, has designated 55 diseases as rare diseases, including Pompe Disease, Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA), which are usually lifelong debilitating medical conditions.

The policy has a provision of free treatment for persons suffering from such diseases at designated ‘”Centres of Excellence” which are authorised to declare any person as suffering from a rare disease.

A Haryana Health Department official said though the National Policy had a provision of financial support of up to Rs 50 lakh to any patient suffering from any rare disease at any of the “Centres of Excellence”, yet the monthly pension for such patients was being provided with a view to take care of their routine expenditure.

He said the civil surgeons would register such patients on the basis of their record of medical diagnosis at the “Centres of Excellence”. Thereafter, a “verification certificate” would be issued to the patient. The District Social Welfare Officer will approve the pension for the patient after verification from the civil surgeon concerned, he added.