Lok Sabha Question No. 2929 (UNSTARRED), answered on 2018-08-03
Subject: Sickle Cell Anaemia
Ministry: HEALTH AND FAMILY WELFARE
Asked by: SUNIL BALIRAM GAIKWAD

## GOVERNMENT OF INDIA MINISTRY OF HEALTH AND FAMILY WELFARE DEPARTMENT OF HEALTH AND FAMILY WELFARE

## LOK SABHA UNSTARRED QUESTION NO. 2929 TO BE ANSWERED ON 3 rd AUGUST, 2018

## SICKLE CELL ANAEMIA

## 2929. DR. SUNIL BALIRAM GAIKWAD:

Will the Minister of HEALTH AND FAMILY WELFARE be pleased to state:

- (a) whether the Government proposes to launch a programme for prevention and control of sickle cell anaemia, thalassemia and haemophilia in the country;
- (b) if so, the details thereof along with the time by which the programme is likely to be launched;
- (c)  the  extent  of  financial  and  technical assistance/commodities  being  provided  by the Government to the States/UTs for the investigation, prevention and control of the aforesaid blood disorders during the las tthree years and the current year; and
- (d) the measures being taken by the Government to promote research in order to develop therapy of hereditary blood disorders through stem cell in the country?

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

- (a): Public  Health  and  Hospitals  is  a  state  subject.    Under  the  National  Health  Mis support is already being provided to States/UTs to strengthen their healthcar e systems including for prevention and management of sickle cell anaemia, thalassemia and haemophilia based on the proposals submitted by the State/UT Governments in their Programme Implementation Plans.
- (b): Does not arise in view of answer to (a) above.
- (c): The details of support provided to 27 States/UTs in the last three years are at Anne -I.
- (d): The information as provided by ICMR is at Annexure -II.

| Budget for Blood Disorders for 3 years   | Budget for Blood Disorders for 3 years   | Budget for Blood Disorders for 3 years   | Budget for Blood Disorders for 3 years   | Budget for Blood Disorders for 3 years               |
|------------------------------------------|------------------------------------------|------------------------------------------|------------------------------------------|------------------------------------------------------|
| S.No                                     | State                                    | Budget for Blood Disorder for 2015 - 16  | Budget for Blood Disorder for 2016 - 17  | (Rs in Lakhs) Budget for Blood Disorder for 2017- 18 |
| 1                                        | Uttarakhand                              | 0                                        | 122.86                                   | 385.46                                               |
| 2                                        | Uttar Pradesh                            | 0                                        | 2030.66                                  | 3069.11                                              |
| 3                                        | Gujarat                                  | 532.93                                   | 0                                        | 430                                                  |
|                                          | Kerala                                   | 0                                        | 47.87                                    | 0.79                                                 |
| 4                                        | Chhattisgarh                             | 0                                        | 292                                      | 129.9                                                |
| 5                                        | Odisha                                   | 249.61                                   | 100.84                                   | 391.81                                               |
| 6                                        | Himachal Pradesh                         | 0                                        | 7.5                                      | 0                                                    |
| 7                                        | Maharashtra                              | 4330.7                                   | 1455.24                                  | 1397.22                                              |
| 8                                        | Jharkhand                                | 0                                        | 391.85                                   | 1.5                                                  |
| 9                                        | Tripura                                  | 0                                        | 100                                      | 0                                                    |
| 10                                       | Haryana                                  | 0                                        | 1164.56                                  | 197.2                                                |
| 11                                       | Dadar Nagar Haveli                       | 0                                        | 0                                        | 4.97                                                 |
| 12                                       | Delhi                                    | 0                                        | 0                                        | 75                                                   |
| 13                                       | Tamil Nadu                               | 0                                        | 230.76                                   | 80                                                   |
| 14                                       | Assam                                    | 0                                        | 0                                        | 18.5                                                 |
| 15                                       | Manipur                                  | 0                                        | 85                                       | 0                                                    |
| 16                                       | Punjab                                   | 0                                        | 0                                        | 500                                                  |
| 17                                       | Rajasthan                                | 329                                      | 346                                      | 100.1                                                |
| 18                                       | Arunachal Pradesh                        | 0                                        | 14.14                                    | 50                                                   |
| 19                                       | Goa                                      | 0                                        | 4.78                                     | 0                                                    |
| 20                                       | Bihar                                    | 0                                        | 31.43                                    | 27.92                                                |
| 21                                       | Karnataka                                | 0                                        | 964.4                                    | 1412.4                                               |
| 22                                       | Telangana                                | 0                                        | 100.3                                    | 0                                                    |
| 23                                       | Madhya Pradesh                           | 0                                        | 1139.5                                   | 0                                                    |
| 24                                       | Andhra Pradesh                           | 112                                      | 825.62                                   | 172.72                                               |
| 25                                       | West Bengal                              | 0                                        | 2217.03                                  | 1800                                                 |
| 26                                       | Jammu & Kashmir                          | 15                                       | 20                                       | 62.54                                                |
| 27                                       | Nagaland                                 | 0                                        | 20.55                                    | 0                                                    |
|                                          | Total                                    | 5569.24                                  | 11712.89                                 | 10307.14                                             |

Source: State approvals

ICMR's efforts have been on the following areas towards thalassemia control:

- Neonatalscreening
- Prenatal diagnosis for thalassemia
- Training and quality control for prenatal and neonatal screening
- Molecular characterization of hemoglobinopathies
- Bone Marrow Transplant ( BMT )clinical trial for hemoglobinopathies
- National Registry for thalass emi  Awareness and education

ICMR also established satellitecentre for Hemogloginopathies in Chandrapur, Maharashtra. major objectives of this centre are to undertake community  control  program and basic r in hemoglobinopathies to benefit the local population and to develop human resources  who can further carry out the work in other regions of the country where hemoglobinopathies  is a major health burden.  More than 600 sickle cell disorders patients have been identified andf upregular ly  for care and better  managements.  Antennal screening of more than 9000 wom has identified 40 high risk couples who were offered prenatal diagnosis at ICMR - NIIH, Mumbai. Newborn screening has also been initiated where over 1000 babies havebeen  scre ened  and 4 babies  with  SCD  and  85  with  Sickle  Cell  carrier  have  been  identified.    Multiple  re programmes in pathophysiology of SCD have also been undertaken.

ICMR has established centres for molecular diagnosis for prevention and control hemoglobinopathies  at following institutes by providing infrastructure and technical ass 1.  CMC  Ludhiana,Punjab  2.  NRS  Medical  College  ,  Kolkata,  West  Bengal.  3.  Valsad  and SuratRaktdan  Kendra,  Gujarat  4.  St  John's  Medical  College  ,  Bangalore,  Karnataka 5.  Govt. Medical College, Nagpur, Maharashtra.

ICMR -NIIH Mumbai also has a prenatal diagnosis facility for sickle cell disease and cu the technology is being transferred to ICMR's institutes, NIRTH Jabalpur and RMRC Dibrugarh which will ultimately benefit the tribal population of these states.

Govt. agencies including ICMR, DBT, DST and CSIR are supporting and promoting research in the field of Stem Cell Research.

ICMR is promoting basic as well as clinical research through open ended projects as well as Task Force mode stem Cell research is one of the priority areas of ICMR