Lok Sabha Question No. 3433 (UNSTARRED), answered on 2021-08-09
Subject: Sickle Cell Disease in Tribal Population
Ministry: TRIBAL AFFAIRS
Asked by: Pratap Chandra Sarangi

## GOVERNMENT OF INDIA (MINISTRY OF TRIBAL AFFAIRS)

## LOK SABHA UNSTARRED QUESTION NO. 3433

TO BE ANSWERED ON: 09.08.2021

## SICKLE CELL DISEASE IN TRIBAL POPULATION

## 3433. SHRI PRATAP CHANDRA SARANGI:

Will the Minister of TRIBAL AFFAIRS be pleased to state:

- (a) whether it is a fact that sickle cell disease is found mostly among the tribal population;
- (b)  if so, the incidence of sickle cell disease, State-wise; and
- (c) the details of the steps taken by the Government to eradicate the disease?

## ANSWER

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

- (a):       Sickle Cell Disease is a genetic blood disorder affecting tribal population in Central, Western and Southern India.
- (b):      The Ministry of Tribal Affairs had given funds for screening of tribal students in collaboration with ICMR. Workshops have been conducted in States in collaboration with Department of Biotechnology for mapping of incidences of Sickle Cell Trait. Out of the 1,13,83,664 persons screened as reported by various States, about 8.75% (9,96,368) tested positive (Trait -949057, Disease - 47311 ) . State wise details are at Annexure 1 . However, State wise prevalence rate of sickle cell disease among the tribal population is not known  in  a  definite  manner  as  no  such  database  is  maintained  centrally.  There  are  certain  studies undertaken by ICMR showing that the prevalence across the country is 5-34% (as per document on Sickle Cell Anaemia Control Program published by the state government of Gujarat).
- (c):       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 prenatal 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 2 .

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 in collaboration with Piramal Swasthya Management and Research Institute, to create a database of individuals with  SCD  or  trait  in  the  tribal  populations;  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. The issue has been inter-alia taken up with Chief Secretary(s) vide D.O. letter dated 18.06.2021 regarding compilation of SCD data at state level.

(ii)  TRI Division of MoTA has sanctioned a research study program to Sir Ganga Ram Hospital on sickle cell disease wherein the organization is required to prepare treatise on SCD for training of trainers in medical colleges and modules for training of medical officers at district hospitals and  integrated  center  for  hemoglobinopathies  and  hemophilia.  Project  will  also  cover  4-5 workshops  for  training  of  trainers.  As  on  date,  Sir  Ganga  Ram  Hospital  has  prepared  draft modules and these have been scrutinized by Technical Expert Group (TEG) comprising of experts in  the  field.  Modules  have  now  been  forwarded  to  Directorate  General  Of  Health  Services (DGHS), Ministry of Health & Family Welfare for their comments.

(iii)    Integrated  Sickle  Cell  Anemia  Research  Program  "I-SCARP'  in  Nandurbar  district, Maharashtra : TRI Division has given this project to Swami Vivekananda Yoga Anusandhana Samsthana, S-Vyasa University, Bangalore and INFOMED, Ahmedabad. The project primarily aims to explore naturopathy and yogic methods for curing sickle cell anaemia disease and it is ongoing.

(iv)  TRI Division has given a project 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 to TRI Odisha which is to be executed in collaboration with RMRC, Odisha.

(v)  A project 'Diagnosis, IEC and Nutri support for sickle cell anaemia and Thalassemia affected patients' to TRI Telangana and it is to be done in consultation with Piramal Foundation and other organizations working with MoTA on SCD project.

(vi)   A  project  entitled  'Mapping  of  Sickle  Cell  Anemia   among  the  Tribal  Communities, Collation of compilation of data, mapping of organisations 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 NTRI.

The Sickle Cell disease can be eliminated only if mass awareness campaign are started and there is participation of States, elected representatives, teachers and medical staff at schools and college level.    Dedicated Health Cell has been established in Ministry for ensuring the STC component of Health is utilised effectively.  Ministry has asked States to submit proposals for funding for basic Infrastructure- as per ready Reckoner and a letter from Secy Ministry of Tribal Affairs to Chief Secretaries of States.  Ministry has also taken up the issue of disability certificate issued to SCD patients with   Department of Empowerment pf person with disabilities, who have notified that Disability Certificate for than 80% disability would be valid for 3 years.

Annexure 1 referred to in reply to part (b) of the Lok Sabha Unstarred Question No. 3433 to be answered on 9 th  August 2021.

## Update on 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.

Annexure 2 referred to in reply to part (c) of the Lok Sabha Unstarred Question No. 3433 to be answered on 9 th  August 2021.

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                            |

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