Lok Sabha Question No. 3836 (UNSTARRED), answered on 2023-08-11
Subject: Tribal Citizens affected by Sickle Cell Anaemia
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Prabhubhai Nagarbhai Vasava

## GOVERNMENTOFINDIA MINISTRYOF HEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH ANDFAMILYWELFARE

## LOK SABHA UNSTARRED QUESTION NO. 3836 TO BE ANSWERED ON 11.08.2023

## 'TRIBALCITIZENS AFFECTED BY SICKLE CELLANAEMIA'

## 3836. SHRI PARBHUBHAI NAGARBHAI VASAVA:

## Will the Minister of HEALTH AND FAMILYWELFARE be pleased to state

- a. whether it is a fact that sickle cell anaemia affects several people across the country particularly in the areas of tribal communities and if so, the details thereof;
- b. the number of people affected from the said disease during the last five years, year-wise;
- c. the efforts made by the Government for providing treatment to the tribal population of the country; and
- d. the amount of fund(s) spent for this purpose during the last three years along with physical and financial achievements in this regard, year-wise?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH & FAMILY WELFARE (PROF. S. P. SINGH BAGHEL)

(a) to (c): Sickle cell disease is a genetic blood disease which affects the whole life of patient. It is more common in the tribal population of India, but occurs in non tribals too. It not only causes anemia but also pain crisis, reduced growth and affects many organs like lungs, heart, kidney, eyes, bones and the brain.

To eliminate sickle cell disease, Sickle Cell Anemia 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 and accessible care to all Sickle Cell Diseased patients, quality of care for diseased and reduction in the prevalence of Sickle Cell Disease through awareness creation, universal screening of 7 crore people in the age group of 0-40 years in affected 278 districts of tribal areas, and counseling through collaborative efforts of central ministries and state governments.

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. State Govts. have to play an important role in implementation of mission activities. State Governments are doing screening by scheduling outreach campaign in villages and schools/hostels. The preventive measurement and management of disease is also an important component of the mission.

Ministry of Health and Family Welfare has launched a National Sickle cell portal where progress of screening can be accessed at https://sickle.nhm.gov.in.

Under the National Sickle Cell Anaemia Elimination Mission, patients living with Sickle Cell disease including tribal population are provided with the following services/ facilities for improving their quality of life through Ayushman Bharat-Health and Wellness Centres (ABHWC);

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

(d) Sickle Cell Anemia Elimination Mission is a sub mission of NHM. Based on the proposal received from States, the funds have been approved by MoHFW under NHM. The State-UT wise SPIP approval and expenditure for hémoglobinopathies (blood disorder), blood services under NHM for the financial year 2020-21 to 2022-23 is given at Annexure.

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## State/UT wise SPIP Approval and Expenditure for hemoglobinopathies(blood Disorder), Blood Services under National Health Mission (NHM) from FY 2020-21 to FY 2022-23

(Rs. in Lakh)

| State/UTs                           | 2020-21        | 2020-21      | 2021-22        | 2021-22      | 2022-23        | 2022-23      |
|-------------------------------------|----------------|--------------|----------------|--------------|----------------|--------------|
|                                     | SPIP Approv al | Expen diture | SPIP Approv al | Expen diture | SPIP Approv al | Expen diture |
| Andaman and Nicobar Islands         | 4.64           | 3.75         | 0.70           | -            | -              | -            |
| Andhra Pradesh                      | 10.00          | 10.00        | 3,297.7 6      | 3,181.7 5    | 2,967.2 9      | 767.36       |
| Arunachal Pradesh                   | 65.90          | 61.28        | 30.64          | -            | 145.18         | 101.84       |
| Assam                               | 525.76         | 183.24       | 430.04         | 137.01       | 1,309.5 6      | 740.61       |
| Bihar                               | 339.14         | 156.78       | 69.49          | 141.60       | 1,495.1 0      | 351.21       |
| Chandigarh                          | -              | -            | -              | -            | 17.50          | -            |
| Chhattisgarh                        | 549.78         | 50.73        | 897.25         | 762.07       | 1,954.4 3      | 1,349.9 1    |
| Dadra & Nagar Haveli and Daman &Diu | 1.75           | -            | -              | -            | -              | -            |
| Delhi                               | -              | -            | 714.70         | 0.32         | 2,607.4 5      | 7.25         |
| Goa                                 | 3.00           | -            | -              | -            | 70.00          | 69.85        |
| Gujarat                             | 9.00           | 4.76         | 108.50         | 11.94        | 907.81         | 172.37       |
| Haryana                             | 43.36          | 9.89         | 543.80         | 236.54       | 468.00         | 389.39       |
| Himachal Pradesh                    | 342.12         | -            | 1.80           | 50.00        | 243.50         | 25.30        |
| Jammu and Kashmir                   | 612.85         | 6.14         | 1,440.3 4      | 65.86        | 1,052.5 2      | 599.13       |

| Jharkhand      | 841.25    | 116.83    | 1,541.0 0   | 225.83    | 1,621.2 5   | 841.84     |
|----------------|-----------|-----------|-------------|-----------|-------------|------------|
| Karnataka      | 50.00     | -         | 2,382.8 0   | 558.89    | 7,251.8 8   | 646.96     |
| Kerala         | 81.89     | 103.25    | 3,528.0 9   | 2,276.5 7 | 5,772.0 8   | 3,679.1 8  |
| Lakshadweep    | 7.20      | -         | 0.12        | -         | 2.00        | 3.24       |
| Madhya Pradesh | 1,971.6 3 | 1,159.3 8 | 2,314.0 0   | 1,349.3 6 | 5,240.7 5   | 3,729.7 2  |
| Maharashtra    | 891.81    | 407.15    | 6,050.7 0   | 3,458.4 4 | 9,799.9 0   | 1,683.0 5  |
| Manipur        | 102.40    | 2.76      | 20.50       | 175.34    | 614.56      | 67.92      |
| Meghalaya      | 26.44     | 5.00      | 56.72       | 35.58     | 152.71      | 91.92      |
| Mizoram        | 1.75      | 7.32      | 33.23       | 34.12     | 46.60       | 6.37       |
| Nagaland       | -         | -         | 53.07       | 7.50      | -           | -          |
| Odisha         | 1,899.4 7 | 1,090.8 2 | 194.62      | 215.03    | 2,852.1 6   | 1,961.9 4  |
| Puducherry     | 8.00      | 6.86      | 22.50       | 2.11      | 22.50       | 1.19       |
| Punjab         | -         | -         | 2,482.0 0   | 1,882.1 4 | 3,708.6 8   | 1,486.1 3  |
| Rajasthan      | 1,006.3 1 | 218.12    | 1,633.0 2   | 665.22    | 4,476.8 0   | 416.73     |
| Sikkim         | 1.35      | -         | 19.30       | -         | 5.97        | -          |
| Tamil Nadu     | 109.24    | 31.37     | 4,603.0 6   | 4,847.0 7 | 6,807.2 3   | 6,519.9 8  |
| Tripura        | 6.00      | 0.02      | 134.64      | 87.96     | 514.58      | 58.04      |
| Uttar Pradesh  | 4,315.6 2 | 5,120.8 2 | 2,143.5 5   | 73.64     | 22,454. 64  | 14,581. 78 |
| Uttarakhand    | 50.23     | 86.05     | 506.57      | 510.09    | 1,437.3 4   | 380.81     |
| West Bengal    | 40.64     | 24.60     | 2,283.6 0   | 2,635.0 3 | 5,823.6 1   | 4,263.6 2  |

| Telangana   |   490.00 | 124.38   |   892.00 | 902.09   |   1,822.8 6 |   489.42 |
|-------------|----------|----------|----------|----------|-------------|----------|
| Ladakh      |   134.47 | -        |       30 | -        |      159.66 |    97.63 |

Note

1. SPIP Approval and Expenditure is as per FMR Submitted by the States/UTs.
2. Expenditure includes expenditure against Central Release, State release & unspent balances at the beginning of the year and are provisional.
3. The above data includes activities inter alia transfusion support to blood disorders and for prevention programs, patients requiring blood transfusion, one time screening to sickle cell trait, Infrastructure for Day care centre for hemoglobinopathies, drugs and supplies for blood related disorder hemoglobinopahties and hemophilia, Printing for hemoglobinopathies, follow up mechanism for the severly anaemic women with blood disorder, E -Rakt kosh to strengthening of blood services guidelines and software for hemogllbinopathies & hemophilia, BCTV wih TA/DA and POL, Infrastructure for Blood Bank/BCSU/BSU/, equipment for blood banks/BCSU/BSU, drugs and supplies for blood services , traning for blood services, IEC/BCC activities under blood services , Screening for Blood Disorders, Support for Blood Transfusion, Blood Bank/BCSU/BSU/Thalassemia Day Care Centre, Blood collection and Transport Vans, Other Blood Services & Disorders Components.