Parliament Question: Unutilised Fund under NPRD 2021

GOVERNMENTOFINDIA MINISTRYOFHEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH AND FAMILYWELFARE LOK SABHA UNSTARREDQUESTION NO. 3284 TOBE ANSWERED ON 7TH AUGUST2026 UNUTILISED FUND UNDER NPRD 2021

3284.SHRIJOYANTABASUMATARY:

Will the Minister of HEALTHANDFAMILYWELFARE be pleased tostate:

(a) whether the Government has taken a formal decision regarding unutilised funds under National Policy for Rare Diseases (NPRD) 2021 for the current and previous financial years, if so, the detailsthereofand if not,the reasons therefor;

(b) whether these funds are proposed to be carried forward, reallocated or allowed tolapse, if so, the details thereof including the quantum of funds proposed to be carried forward, reallocated and allowed to lapse along with the reasons for each of the same and the rules governingsuch decisions;

(c) whether the Government is likely to permit immediate utilisation of unspent funds to support patients who have exhausted the one-time assistance, if so, the details thereof and if not,the reasons therefor;

(d) whether the Government accepts responsibility for the denial of treatment despite the availabilityof funds inthis regard,if so, the detailsthereof; and

(e)the time-boundmeasures being takenbythe Government toensure full utilisationof funds meantfor life-saving care? ANSWER THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY WELFARE (SHRIPRATAPRAO JADHAV)

(a)to(d) The National Policy for Rare Diseases (NPRD), 2021 has utilized approximately 98.80% of the Revised Estimate (RE) for FY 2023-24, 97.60% for FY 2024- 25 and 98.90% for FY2025-26. In FY2026-27, around 39.08% of the Budget Estimate (BE) has already been utilized as on date. The lumpsum funds released to the Centers of Excellence (CoEs) based onthe recommendation of the dedicated Rare Disease Committee at each CoE after clinical examination of the patients on case-to-case basis are carried forward tothe next year.The matter of providing financial assistance above the ceiling of ₹50 lakhs under NPRD is sub judice before Hon’ble Supreme Court, wherein the Government has been directed to complywith the extant guidelinesof the policy.

(e) Some of the measures taken by the Government to ensure full utilization of funds

underNPRDare:  The number of Rare Diseases identified under NPRD has increased from 51 to 63, enablingmore patients toget benefitunderthe policy.  The number of Centers of Excellence (CoEs) has doubled from 8 to 16 since the inception of the policy in 2021, thereby increasing geographical outreach and accessibility of treatment.

 The guidelines of the policy have been amended to enable the CoEs to outsource transplant facilities to fast track the treatment of patients suffering from Group 1 Rare Diseases. *****