Lok Sabha Question No. 193 (STARRED), answered on 2025-08-01
Subject: Sickle Cell Disease
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Shri Rajkumar Roat

## GOVERNMENTOFINDIA MINISTRYOF HEALTH AND FAMILY WELFARE DEPARTMENTOFHEALTH AND FAMILY WELFARE

## LOK SABHA STARRED QUESTION NO. 193 TO BE ANSWERED ON 1 ST AUGUST, 2025.

## SICKLE CELLDISEASE

## †*193. SHRI RAJKUMAR ROAT:

Will the Minister of HEALTHANDFAMILYWELFARE be pleased to state:

(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/category and year-wise;

(c) the efforts being made to assess the socio-economic status of the people affected by sickle cell, mortality rate and to provide pre-marital counselling and create awareness for prevention along with the distribution of genetic counselling cards, medicines and vaccines across the country, State/UT-wise particularly in the Lok Sabha 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 thereof and if not, the reasons therefor?

## ANSWER THE MINISTER OF HEALTH AND FAMILYWELFARE (SHRI JAGAT PRAKASH NADDA)

(a) to (e): AStatement is laid on the Table of the House.

## STATEMENT REFERRED TO IN REPLY TO LOK SABHASTARRED QUESTION NO.193 FOR 1 ST AUGUST, 2025

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(a) to (e): To eliminate Sickle Cell Disease (SCD), National Sickle Cell Anaemia Elimination Mission (NSCAEM) has been launched by Hon'ble Prime Minister from Madhya Pradesh on 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 States is attached as Annexure-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 improving their quality of life through AAMs;

- Follow-up of diseased individuals at frequent intervals.
- Counseling regarding lifestyle management, pre-marriage and pre-natal decisions.
- Nutritional supplementation support through distribution of folic acid tablets.
- Conducting yoga and wellness sessions.
- Management of crisis symptoms and referral to higher facilities.

As on 28.07.2025, a total of 2,62,67,997 genetic counselling ID cards have been distributed in the country including 16,97,638 cards in Rajasthan.

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) and District Hospitals to address the issue of access to medicine. Under NHM, financial support is provided for the procurement of Hydroxyurea, to reduce the out-ofpocket expenditure borne by sickle cell anaemia patients.

Through Ministry of Tribal Affairs (MoTA), awareness and counseling material have been developed and disseminated to the 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.

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Annexure-I

| Total No. of diseased identified through screening in the affected States, as on 28.07.2025   | Total No. of diseased identified through screening in the affected States, as on 28.07.2025   | Total No. of diseased identified through screening in the affected States, as on 28.07.2025   | Total No. of diseased identified through screening in the affected States, as on 28.07.2025   | Total No. of diseased identified through screening in the affected States, as on 28.07.2025   | Total No. of diseased identified through screening in the affected States, as on 28.07.2025   | Total No. of diseased identified through screening in the affected States, as on 28.07.2025   |
|-----------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------|-----------------------------------------------------------------------------------------------|
| State Name                                                                                    | Total Screenings conducted                                                                    | Total No. of Diseased                                                                         | Total No. of Diseased                                                                         | Total No. of Diseased                                                                         | Total No. of Diseased                                                                         | Total No. of Diseased                                                                         |
|                                                                                               |                                                                                               | ST including PVTG                                                                             | SC                                                                                            | OBC                                                                                           | Others                                                                                        | Total                                                                                         |
| 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                                                                                            | 488                                                                                           |

| UTTAR PRADESH   | 7,63,236    | 9      | 3      | 12     | 8      | 32       |
|-----------------|-------------|--------|--------|--------|--------|----------|
| UTTARAKHAND     | 1,53,171    | 5      | -      | -      | 1      | 6        |
| WEST BENGAL     | 23,86,865   | 94     | 296    | 43     | 450    | 883      |
| Total           | 6,04,50,683 | 73,810 | 33,979 | 40,264 | 68,065 | 2,16,118 |

Annexure-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. No. | Name of Districts   | Total Approval   | Total Utilization   |
|----------|---------------------|------------------|---------------------|
|        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           |

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