Parliament Question: Duchenne Muscular Dystrophy (DMD) in Children

GOVERNMENTOFINDIA MINISTRYOFHEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH AND FAMILYWELFARE LOK SABHA UNSTARRED QUESTION No. 5592 TOBE ANSWERED ON27th MARCH 2026 DUCHENNE MUSCULAR DYSTROPHY(DMD) IN CHILDREN

5592.SHRIDEEPENDER SINGH HOODA:

Will the Minister of HEALTHANDFAMILYWELFARE be pleased tostate:

(a) whether the Government has data on the number of children who have died due to Duchenne Muscular Dystrophy (DMD) during the last five years, if so, the details thereof, year-wiseandState/UT-wise and if not,the reasons therefor;

(b) the estimatednumber of childrensufferingfrom DMD inthe country, State/UT-wise; and

(c) whether the Government has prepared any time-bound roadmap to address DMD in the country, including milestones such as the availability of affordable treatment and the establishment of treatment centresandif so, the detailsthereof? ANSWER THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY WELFARE (SHRIPRATAPRAO JADHAV)

(a)and(b) As per the data obtained from the National Registry for Rare and Other Inherited Disorders (NRROID) maintained by the Indian Council of Medical Research

(ICMR), since 2019, around 4749 Duchenne Muscular Dystrophy (DMD) patients have been enrolled in 23 centers across the country. A total of 184 DMD patients are reported as deceasedinthe Registry. State/UT-wise distribution of thisdata isplacedat annexure.

(c) DMD is categorized as a rare disease under the National Policy for Rare Diseases

(NPRD), 2021 framed by the Ministry of Health and Family Welfare. Health being a State subject, the primary responsibility of providing healthcare services is that of the State Governments. However, to mitigate the challenges posed by rare diseases in India, the policy provides financial and medical assistance for treatment of patients suffering from identified rare diseases in the designated Centers of Excellence (CoEs). Following measures have

alreadybeentakento address the DMDissue:  The limit of financial assistance provided by NPRD for treatment of rare disease has increased from ₹20 lakhs to ₹50 lakhs per patient. Rare Disease Committee of the CoEs decides treatment and fund allocation after clinical examination on case-to-case basis.

 Since the inception of the NPRD, the number of CoEs has increased from 8 to 15 and the numberof rare diseases covered underthe policyhasincreasedfrom 51to63.  The Ministry of Finance provides exemption from Basic Customs Duty (BCD) and Integrated Goods and Services Tax (IGST) on most of the drugs, medicines and Food for SpecialMedical Purposes(FSMP),subject toextantrules. Some Made-in-India drugs have become available at 1/10th of the price of the imported Reference Listed Drug (RLD) as NITI Aayog constituted a Committee for ‘Drugs and Dosage Formsfor Rare Diseases: Engagementwith Manufacturers’ tofast track indigenous development and marketing of identified orphan drugs by engaging with domestic manufacturers.

 The Department of Pharmaceuticals has initiated implementation of ‘Production Linked Incentive’ scheme for pharmaceuticals which provides financial incentives to the manufacturers selected for domestic manufacturing of various product categories, includingrare disease medicines.Annexure State/UT-wise numberof DMD Patientsenrolled inthe NRROID since 2019 State/UTs No. of patients Uttar Pradesh 911 Karnataka 547 West Bengal 428 Tamil Nadu 342 Bihar 300 Delhi 286 Andhra Pradesh 255 Rajasthan 219 Madhya Pradesh 209 Telangana 201 Haryana 197 Kerala 153 Maharashtra 149 Punjab 147 Gujarat 77 Odisha 58 Jharkhand 51 HimachalPradesh 44 Assam 42 Jammu Kashmir 33 Uttarakhand 31 Chhattisgarh 25 Tripura 15 Chandigarh 13 Puducherry 7 Ladakh 3 Manipur 3 Nagaland 2 Mizoram 1 GrandTotal 4749

Source: National Registry forRare andOther Inherited Disorders (NRROID) maintainedby Indian Council of MedicalResearch.State/UT-wise distribution of deceased DMDpatients inthe NRROID since 2019 State/UTs No. of patients Karnataka 77 West Bengal 25 Andhra Pradesh 24 Uttar Pradesh 11 Assam 7 Bihar 7 Tamil Nadu 5 Telangana 5 Haryana 4 Kerala 4 Maharashtra 4 Rajasthan 3 Punjab 2 Chhattisgarh 1 Delhi 1 Jharkhand 1 Madhya Pradesh 1 Odisha 1 Tripura 1 Total 184

Source: National Registry forRare andOther Inherited Disorders (NRROID) maintainedby Indian Council of MedicalResearch.