Lok Sabha Question No. 802 (UNSTARRED), answered on 2022-02-07
Subject: Sickle Cell Disease among Tribal Population
Ministry: TRIBAL AFFAIRS
Asked by: Rita Bahuguna Joshi, Shyam Yadav Singh

## GOVERNMENT OF INDIA

## MINISTRY OF TRIBAL AFFAIRS LOK SABHA UNSTARRED QUESTION NO- 802 TO BE ANSWERED ON- 07/02/2022

## SICKLE CELL DISEASE AMONG TRIBAL POPULATION

## 802.     SHRIMATI RITA BAHUGUNA JOSHI: SHRI SHYAM SINGH YADAV:

Will the Minister of TRIBAL AFFAIRS be pleased to state:

- (a) whether the Government has conducted nationwide screening for Sickle Cell Disease (SCD) among the tribal population of the country;
- (b) if so, the details thereof;
- (c) the steps taken by the Government for the preventive measure and its treatment in the tribal population;
- (d)  whether  the  Government  will  promote  more affected  tribal  persons  to  get  voluntarily  registered  on  SCD support centre to get information about the disease and resources to get help and if so, the details thereof?
- (e) the number of tribal women suffering from sickle cell anaemia in Uttar Pradesh; and
- (f) the steps which the Government is taking to eliminate sickle cell anaemia amongst tribal women?

## ANSWER

## MINISTER OF STATE FOR TRIBAL AFFAIRS (SMT. RENUKA SINGH SARUTA)

(a) & (b) Ministry of Tribal affairs has conducted screening of tribal population in collaboration with ICMR and Department  of  Biotechnology.  Out  of  the  1,13,83,664  persons  screened  in  different  States,  about  8.75% (9,96,368) tested positive (Trait -949057, Disease - 47311).

(c) to (f): Public Health is a state subject and Ministry of Health and Family welfare is the sectoral Ministry for all health issues, including sickle cell.  National Health Mission has prepared a comprehensive guideline to control and prevent Haemoglobinopathies, including Sickle Cell Disease, and has disseminated the same to the States. This includes pre-natal diagnosis,counseling and setting up of early intervention centers to prevent and treat the complications arising from the disease. At present there is no permanent cure for the disease. However, with good management of disease, severity and complications can be curtailed to improve the quality of life and life span of the people suffering with the disease. In consultation with Department of Health Research, Ministry of Tribal Affairs has circulated advisories on Sickle Cell Disease with a protocol for premarital counseling of people with sickle cell trait (carrier). A total of about Rs. 60.00 Crore has been released to the States seeking grants to tackle the Sickle Cell Anemia, including screening.  State wise details for fund released is at Annexure 1 .

Further, details of various projects undertaken by the Ministry of Tribal Affairs are as under:

(i)  Sickle Cell Disease Support Corner (https://scdcorner.in/) has been developed to create awareness about SCD and to connect these individuals to welfare schemes, disease-specific healthcare services and validated health information and to enable data-driven policy insights and strategic inputs. In collaboration with organisation like Pirmal Swasthya, USAID and Novartis,Ministry has started "Unmukt" program on pilot basis in 2 districts one in Chattisgarh and  the other In Jharkhandd to create awarenes about the disease.

(ii)  This Ministry in consultation with Ministry of Health and Family Welfare is developing a treatise on SCD for training of trainers in medical colleges and modules for training of medical officers at District hospitals and integrated centers.

(iii)   The Ministry has sanctioned a research project which aims to explore naturopathy and yogic methods for curing sickle cell anaemia disease.

(iv)  The Ministry has sanctioned a project to Tribal Research Institute (TRI) Odisha of Mapping of Sickle Cell Anaemia in the Tribal Sub Plan Area  among the Tribal Communities of the State and a Compendium of Empirical Studies & Its findings on Sickle Cell Anaemia among the Tribal Communities of ODISHA.

(v)  A project 'Diagnosis, IEC and Nutri support for sickle cell anaemia and Thalassemia affected patients' has been sanctioned to TRI Telangana.

(vi)   A  project  entitled  'Mapping  of  Sickle  Cell  Anemia   among  the  Tribal  Communities,  Collation  and compilation of data, mapping of organizations working in Sickle Cell, Data base of master trainers on sickle cell in co-ordination with MoHFW,  Data sharing mechanism and mapping of Blood Banks availability ' has been given to National Tribal Research Institute (NTRI).

(vii).  States  have been asked to seek funds under Grants under article 275(1) for infrastructural requirements related to diagnostic facilities and testing.

Dedicated Health Cell has been established in Ministry to focus upon health issues holistically including Sickle Cell Anemia among ST population including tribal women.

Department of Empowerment of person with Disabilities has issued  notification for considering SCD as disability and issuing  disability certificate more than 80% disability valid for 3 years.

State-wise details of screening of Sickle Cell Disease in tribals is at Annexure 2 . Gender specific information is not maintained by the Ministry.

## Annexure 1 referred to in reply to part (c) of the Lok Sabha Unstarred Question No. 802 to be answered on 07.02.2022

## Statement Showing funds Released to States for Tackling Sickle Cell Anemia including Screening

(Rs. in Lakh)

| S. No.   | Name of State     | Fund sanctioned for Sickle cell   | Fund sanctioned for Sickle cell   | Fund sanctioned for Sickle cell   | Fund sanctioned for Sickle cell   | Fund sanctioned for Sickle cell   | Fund sanctioned for Sickle cell   |
|----------|-------------------|-----------------------------------|-----------------------------------|-----------------------------------|-----------------------------------|-----------------------------------|-----------------------------------|
|          | Name of State     | 2014-15                           | 2015-16                           | 2016-17                           | 2017-18                           | 2018-19                           | 2019-20                           |
| 1        | Andhra Pradesh    | 0.00                              | -                                 | -                                 | 233.00                            | -                                 | -                                 |
| 2        | Assam             | -                                 | -                                 | -                                 | -                                 | -                                 | -                                 |
| 3        | Arunachal Pradesh | 100.00                            | 150.00                            | -                                 | -                                 | -                                 | -                                 |
| 4        | Bihar             | -                                 | -                                 | 10.00                             | 10.00                             | -                                 | -                                 |
| 5        | Chhattisgarh      | 249.60                            | -                                 | 300.00                            | -                                 | -                                 | 90.00                             |
| 6        | Goa               | -                                 | -                                 | -                                 | -                                 | -                                 | -                                 |
| 7        | Gujarat           | -                                 | -                                 | -                                 | -                                 | -                                 | -                                 |
| 8        | Himachal Pradesh  | -                                 | 25.00                             | -                                 | -                                 | -                                 | -                                 |
| 9        | Jammu &Kashmir    | -                                 | -                                 | -                                 | -                                 | -                                 | -                                 |
| 10       | Jharkhand         | 200.00                            | -                                 | -                                 | -                                 | -                                 | -                                 |
| 11       | Karnataka         | 200.00                            | 51.00                             | -                                 | -                                 | -                                 | -                                 |
| 12       | Kerala            | -                                 | 23.00                             | -                                 | -                                 | -                                 | -                                 |
| 13       | Meghalaya         | 300.00                            | -                                 | -                                 | -                                 | -                                 | -                                 |
| 14       | Mizoram           | -                                 | 80.00                             | -                                 | 3.00                              | -                                 | -                                 |
| 15       | Maharashtra       | 100.00                            | -                                 | -                                 | -                                 | -                                 | -                                 |
| 16       | Madhya Pradesh    | 1000.00                           | 350.00                            | -                                 | -                                 | 56.5                              | -                                 |
| 17       | Manipur           | 200.00                            | 150.00                            | -                                 | -                                 | -                                 | -                                 |
| 18       | Nagaland          | 50.00                             | -                                 | -                                 | -                                 | -                                 | -                                 |
| 19       | Odisha            | -                                 | 700.00                            | -                                 | -                                 | -                                 | -                                 |
| 20       | Rajasthan         | 300.00                            | 53.27                             | -                                 | -                                 | -                                 | 200.00                            |
| 21       | Sikkim            | -                                 | 6.50                              | -                                 | -                                 | -                                 | -                                 |
| 22       | Tamil Nadu        | -                                 | -                                 | 27.20                             | -                                 | -                                 | -                                 |
| 23       | Tripura           | -                                 | 50.00                             | 50.00                             | -                                 | -                                 | -                                 |
| 24       | Telangana         | 100.00                            | 126.87                            | -                                 | -                                 | -                                 | -                                 |
| 25       | Uttrakhand        | -                                 | -                                 | -                                 | -                                 | -                                 | -                                 |
| 26       | Uttar Pradesh     | 20.00                             | -                                 | -                                 | -                                 | -                                 | -                                 |
| 27       | West Bengal       | -                                 | 250.00                            | 150.00                            | -                                 | -                                 | -                                 |
|          | Total             | 2819.60                           | 2015.64                           | 537.20                            | 246.00                            | 56.5                              | 290.00                            |

## Annexure 2 referred to in reply to part (e) of the Lok Sabha Unstarred Question No. 802 to be answered on 07.02.2022.

## Screening of Sickle Cell incidences in States

| Name of the State   | Total number of persons screened   | Total number of persons screened   | Total number of persons screened   | Total number of persons screened   | Total number of persons screened   |
|---------------------|------------------------------------|------------------------------------|------------------------------------|------------------------------------|------------------------------------|
|                     | Trait                              | Disease                            | Normal                             | Total                              | Percentage of Normal               |
| Andhra Pradesh      | 57                                 | -                                  | 94718                              | 94775                              | 99.94                              |
| Arunachal Pradesh   | 108                                | -                                  | 155923                             | 156031                             | 99.93                              |
| Assam               | NR                                 | NR                                 | NR                                 | 0                                  |                                    |
| Bihar               | 03                                 | 00                                 | 2933                               | 2936                               | 99.90                              |
| Chhattisgarh        | 21267                              | 590                                | 151036                             | 172893                             | 87.36                              |
| Goa                 | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Gujarat             | 729561                             | 29266                              | 7886101                            | 8644928                            | 91.22                              |
| Himachal Pradesh    | -                                  | -                                  | 432                                | 432                                | 100.00                             |
| Jammu &Kashmir      | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Jharkhand           | 09                                 | 03                                 | 288                                | 300                                | 96.00                              |
| Karnataka           | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Kerala              | 2042                               |                                    | 146138                             | 148180                             | 98.62                              |
| Madhya Pradesh      | 611                                | 312                                | 385365                             | 386288                             | 99.76                              |
| Maharashtra         | 169191                             | 14141                              | 1188426                            | 1371758                            | 86.64                              |
| Manipur             | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Meghalaya           | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Mizoram             | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Nagaland            |                                    | --                                 | 2700                               | 2700                               | 100.00                             |
| Odisha              | 25461                              | 2999                               | 102101                             | 130561                             | 78.20                              |
| Rajasthan           |                                    | --                                 | 1800                               | 1800                               | 100.00                             |
| Sikkim              | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Tamil Nadu          | NR                                 | NR                                 | NR                                 | 0                                  | -                                  |
| Telangana           | 617                                | -                                  | 22775                              | 23392                              | 97.36                              |
| Tripura             | 68                                 | 0                                  | 245947                             | 246015                             | 99.97                              |
| Uttar Pradesh       | 0                                  | 0                                  | 105                                | 105                                | 100.00                             |
| Uttarakhand         | 0                                  | 0                                  | 282                                | 282                                | 100.00                             |
| West Bengal         | 62                                 | -                                  | 226                                | 288                                | 78.47                              |
| Total               | 949057                             | 47311                              | 10387296                           | 11383664                           | 91.25                              |

NR- Not reported.

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