Lok Sabha Question No. 789 (UNSTARRED), answered on 2024-11-29
Subject: Treatment of Sickle Cell Disease
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Dr. Shashi Tharoor

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

## LOK SABHA UNSTARRED QUESTION NO. 789 TO BE ANSWERED ON 29.11.2024

## TREATMENT OF SICKLE CELLDISEASE

## 789. DR. SHASHI THAROOR:

Will the Minister of HEALTHANDFAMILYWELFARE be pleased to state:

- (a) the number of people who are suffering from sickle cell disease in the country, State-wise;
- (b) the percentage of affected people receiving consistent treatment and also the percentage of people who have dropped out of the treatment along with the stage of their dropout;
- (c) whether the Government has organised awareness campaigns to address the myths around sickle cell disease and encourage people to get a timely diagnosis of the disease and if so, the details thereof; and
- (d) whether the Government plans to increase the screening of newborns for sickle cell disease since this action plan would be low cost and high payoff in the country and if so, the details thereof?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (SMT. ANUPRIYAPATEL)

(a) to (d): To eliminate sickle cell disease, Sickle Cell Anaemia Elimination Mission 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 Sickle Cell Disease 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. As on 24.11.2024, a total of 4,75,42,776 population (including new borns) in the 17 identified States have been screened and uploaded on the portal by States.

The total number of people suffering from Sickle cell disease, State-wise, is attached in Anneure-I.

Medical officers prescribe hydroxyurea drugs to the patients who need it regularly. No. of diseased patients receiving treatment of hydroxyurea is attached at Annexure-II . (SourceNSCAEM portal).

Through Ministry of Tribal Affairs, awareness and counseling material have been developed. IEC and media activities are adopted for propagation of awareness of disease, screening and management. Awareness activities are also provided in each sickle cell screening camp. State Governments play an important role in implementation of mission activities including awareness drive.

Annexure-I State-wise details of people suffering from Sickle cell disease, as on 24.11.2024

| S.No.   | State Name     | Number of Sickle Cell Carrier cases   | Number of Sickle Diseased cases   | Cell   |
|---------|----------------|---------------------------------------|-----------------------------------|--------|
| 1       | Andhra Pradesh | 19,375                                | 1,706                             |        |
| 2       | Assam          | 1,321                                 | 258                               |        |
| 3       | Bihar          | 4                                     | 1                                 |        |
| 4       | Chhattisgarh   | 3,18,317                              | 25,378                            |        |
| 5       | Gujarat        | 1,68,715                              | 5,740                             |        |
| 6       | Jharkhand      | 2,899                                 | 2,149                             |        |
| 7       | Karnataka      | 4,592                                 | 564                               |        |
| 8       | Kerala         | 4,326                                 | 1,167                             |        |
| 9       | Madhya Pradesh | 1,64,869                              | 25,307                            |        |
| 10      | Maharashtra    | 1,46,663                              | 19,296                            |        |
| 11      | Odisha         | 3,66,289                              | 88,324                            |        |
| 12      | Rajasthan      | 7,890                                 | 2,947                             |        |
| 13      | Tamil Nadu     | 8,916                                 | 495                               |        |
| 14      | Telangana      | 5,368                                 | 836                               |        |
| 15      | Uttar Pradesh  | 95                                    | 18                                |        |
| 16      | Uttarakhand    | 94                                    | 2                                 |        |
| 17      | West Bengal    | 34,301                                | 5,422                             |        |
|         | Total          | 12,54,034                             | 1,80,610                          |        |

## State wise details of patients receiving consistent treatment of hydroxyurea (As reported by States)

| S.No.   | State Name     | Number of patients on Hydroxyurea   |
|---------|----------------|-------------------------------------|
| 1       | Andhra Pradesh | 835                                 |
| 2       | Assam          | 8                                   |
| 3       | Bihar          | 0                                   |
| 4       | Chhattisgarh   | 18,243                              |
| 5       | Gujarat        | 6,058                               |
| 6       | Jharkhand      | 62                                  |
| 7       | Karnataka      | 66                                  |
| 8       | Kerala         | 1,244                               |
| 9       | Madhya Pradesh | 9,300                               |
| 10      | Maharashtra    | 4,610                               |
| 11      | Odisha         | 20,626                              |
| 12      | Rajasthan      | 203                                 |
| 13      | Tamil Nadu     | 301                                 |
| 14      | Telangana      | 33                                  |
| 15      | Uttar Pradesh  | 0                                   |
| 16      | Uttarakhand    | 0                                   |
| 17      | West Bengal    | 599                                 |
|         | Total          | 62,188                              |