Parliament Question: Sickle Cell Disease

GOVERNMENTOFINDIA MINISTRYOFHEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH AND FAMILYWELFARE LOK SABHA STARREDQUESTION NO. 193 TO BE ANSWERED ON1STAUGUST,2025.

SICKLE CELLDISEASE †*193.SHRIRAJKUMAR ROAT:

Will the Minister of HEALTHANDFAMILYWELFAREbe pleasedtostate:

(a) the total number of screenings carried out so far for sickle cell disease alongwith the total number of sickle cell patients across the country at present, category-wise, year-wise and Statewise;

(b) the details of the programmes being run by the Union Government and State Governments for the treatment of such patients, State/UT-wise especially in Rajasthan, district/categoryand year-wise;

(c) the efforts being made to assess the socio-economic status of the people affected by sickle cell,mortality rate andtoprovide pre-maritalcounselling andcreate awareness for prevention along with the distribution of genetic counselling cards, medicines and vaccines across the country, State/UT-wise particularlyinthe LokSabha Constituency of Banswara;

(d) the details of the amount of funds allocated and utilised thereunder especially for Rajasthan, district-wise; and

(e) whether the Government proposes to launch any special scheme for the scheduled areas for 100% screening, free treatment, pre-marital counselling and distribution of vaccines to ensure health and financial assistance to the poor and tribal families and if so, the details thereofandif not,the reasons therefor? ANSWER THE MINISTER OFHEALTH AND FAMILYWELFARE (SHRIJAGATPRAKASH NADDA)

(a)to(e): AStatementislaid on the Tableof the House.STATEMENTREFERRED TOIN REPLYTO LOK SABHASTARREDQUESTION NO.193 FOR1STAUGUST, 2025 ******

(a) to(e): Toeliminate Sickle Cell Disease (SCD), National Sickle Cell Anaemia Elimination Mission (NSCAEM) has been launched byHon’ble Prime Minister from Madhya Pradeshon 1st July, 2023. The objectives of the Mission are provision of affordable, accessible and quality care to all Sickle Cell Diseased patients, reduction in the prevalence of SCD through awareness creation, targeted screening of 7 crore people till year 2025-26 in the age group of 0-40 years in affected districts of tribal areas and counselling through collaborative efforts of central ministries and State governments. Under NSCAEM, screenings are conducted at all health facilities from District Hospitals upto Ayushman Arogya Mandir (AAM) level. As on

28.07.2025, a total of 6,04,50,683 population in the 17 identified tribal dominated States including scheduled areas, have been screened, out of which 2,16,118 have been confirmed as diseased. State-wise and category-wise details of patients identified through screening in the affected StatesisattachedasAnnexure-I.

Under NSCAEM, screenings are conducted at all health facilities from District Hospitals upto Ayushman Arogya Mandir (AAM) level across the country including Lok Sabha Constituency of Banswara. Patients living with SCD are provided with the following services/ facilities for improvingtheirqualityof life through AAMs;

• Follow-upof diseased individualsat frequent intervals. • Counseling regardinglifestyle management,pre-marriage andpre-nataldecisions. • Nutritional supplementation support through distribution of folic acidtablets.

• Conductingyoga andwellness sessions. • Management of crisis symptoms andreferral tohigherfacilities.

As on 28.07.2025, a total of 2,62,67,997 genetic counselling ID cards have been distributed inthe countryincluding 16,97,638 cardsinRajasthan.

Hydroxyurea has been included in National Health Mission (NHM) Essential Drugs List at Sub-Health Centres, Primary Health Centres (PHC)/ Urban PHC, Community Health Centres(CHC)andDistrict Hospitals toaddressthe issue ofaccesstomedicine.Under NHM, financial support is provided for the procurement of Hydroxyurea, to reduce the out-of- pocketexpenditure borne bysickle cellanaemiapatients.

Through Ministry of Tribal Affairs (MoTA), awareness and counseling material have beendevelopedanddisseminated tothe States& UTs.

This Ministry provides technical and financial support to the States/UTs for conducting screenings and procurement of drugs for sickle cell anaemia, based on the proposals received in the form of Programme Implementation Plans (PIPs) under National Health Mission (NHM). Details of District-wise fund allocation and utilization under NSCAEM in affected districts of Rajasthan from FY 2023-24 to FY 2025-26 is attached at Annexure-II.

******Annexure-I Total No. of diseasedidentified throughscreening intheaffected States,ason28.07.2025 Total No. of Diseased Total Screenings conducted StateName STincluding SC OBC Others Total PVTG ANDHRAPRADESH 13,22,033 1,541 409 109 110 2,169 ASSAM 10,73,410 25 34 130 97 286 BIHAR 2,18,316 - - 7 1 8 CHHATTISGARH 1,54,40,569 3,207 1,929 6,087 14,937 26,160 GUJARAT 77,34,861 25,282 465 1,809 622 28,178 JHARKHAND 26,86,659 707 327 895 216 2,145 KARNATAKA 3,49,319 531 28 12 8 579 KERALA 1,76,690 1,162 22 154 131 1,469 MADHYAPRADESH 1,12,42,861 16,688 4,264 7,521 2,289 30,762 MAHARASHTRA 72,02,439 6,028 4,674 2,154 10,402 23,258 ODISHA 45,46,309 15,525 21,284 21,180 38,495 96,484 RAJASTHAN 37,06,003 2,401 88 93 153 2,735 TAMILNADU 3,76,357 278 36 37 125 476 TELANGANA 10,71,585 327 120 21 20 488UTTAR PRADESH 7,63,236 9 3 12 8 32 UTTARAKHAND 1,53,171 5 - - 1 6 WESTBENGAL 23,86,865 94 296 43 450 883 Total 6,04,50,683 73,810 33,979 40,264 68,065 2,16,118Annexure-II Districts wise funds approval (Screening, genetic counselling ID cards and Treatment) and utilization under NSCAEM in Rajasthan from FY 2023-24 to FY 2025-26:

(Amount in Rs.) S. Name of Districts No. TotalApproval TotalUtilization

1. Banswara 9,41,74,400 8,03,18,400

2. Dungarpur 7,57,48,000 6,31,29,200

3. Pratapgarh 3,80,48,200 3,36,47,200

4. Udaipur 10,01,89,500 8,94,23,800

5. Sirohi 1,45,94,800 1,33,05,300

6. Rajsamand 10,70,100 9,57,300

7. Chittorgarh 11,16,000 9,65,300

8. Pali 36,56,000 33,61,500

9. Baran 84,23,000 58,62,500 ****