Lok Sabha Question No. 2187 (UNSTARRED), answered on 2016-07-29
Subject: Sickle Cell Anaemia
Ministry: HEALTH AND FAMILY WELFARE
Asked by: RAMSINH PATALYABHAI RATHWA, ABHISHEK SINGH, DEVAJIBHAI GOVINDBHAI FATEPARA

## GOVERNMENT OF INDIA MINISTRY OF HEALTH AND FAMILY WELFARE

## DEPARTMENT OF HEALTH AND FAMILY WELFARE

## LOK SABHA UNSTARRED QUESTION NO. 2187 TO BE ANSWERED ON 29 TH JULY, 2016

## SICKLE CELL ANAEMIA

## 2187. SHRI RAMSINH RATHWA: SHRI ABHISHEK SINGH: SHRI DEVAJIBHAI G. FATEPARA:

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

- (a) whether the bulk of tribal population in the country especially in the southern States and Gujarat  are  the  most  afflicted by  the  heredity  disease  Sickle  Cell Anaemia, if  so,  the  details thereof along with number of cases/deaths reported during the last three years;
- (b) whether the medical practitioners in tribal areas of the country are unaware of the existence of the disease resulting in misd agnosis and mistreatment of the disease;
- (c) if so, the details thereof and the steps taken by the Government to create awareness about the disease among the medical practitioners and the people in the tribal areas; and
- (d) whether the Government has launched a Sick le Cell Anaemia Control Programme, if so, the details  along  with  the funds  allocated/released/utilised  and  the achievements  made  so  far  in combating the disease thereof?

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

- (a): No database is maintained at the national level by this Ministry so far as the nu cases  and  deaths  due  to  Sickle  Cell  Anaemia  is  concerned.  However  as  per  the  informa received from the state of Gujarat the morbidity and mor tality numbers are as follows -

| Year     |   Cases |   Deaths |
|----------|---------|----------|
| 2013- 14 |    5701 |       66 |
| 2014- 15 |    4509 |       58 |
| 2015- 16 |    2214 |       70 |

There  is  high  prevalence  of  Sickle  Cell  Anaemia  in  the  tribal  areas  of  Gujarat Southern India.

(c): As per information provided by the Ministry of Tribal Affairs, the Sickle Cell scr programme is being run in as many as 27 states on the behest of that ministry. List is  e Annexure 'A'

In order to create awareness amongst the population certain activities are undert the state level, like Screening, Prenatal and Post natal Counselling, Diagnosis and Trea cases.

States  have  informed  that  IEC  activities  are  carried  out  by  Gov ernment  to  create awareness about the disease among the medical practitioners and the people in the triba Apart from this, Ministry of Tribal Affairs  organizes regional training workshop collaboration with Indian Council of Medical Research (IC MR) to facilitate State/UTs to train adequate manpower to undertake the screening exercise. In addition, Department Biotechnology is involved in research to find cure of the disease.

(d) : There is no separate vertical programme for Sickle Cell Anaemia control. Public health is a state subject; however, under the National Health Mission, the Government supplements efforts  of  State  governments  in  providing  health  care  services,  including  for  prevent control of Sickle cell disease.

Considering t he burden of disease, a Guideline for prevention and  control o Haemoglobinopathies  (including  Sickle  Cell  Anaemia)  have  been  developed  under  Nationa Health  Mission  and  disseminated  to  the  States  for  implementation.  The  Guideline  envis antenatal  check up  of  pregnant  women  and  utilisation  of  RBSK  (Rashtriya  Bal  Swasthya Karyakram) program for screening of the prospective mothers and the children respectively.

The funds allocated so far from the NHM Government of India is annexed at (Annexur 'B') .The fund allocated from Ministry of Tribal Affairs is annexed at (Annexure 'C')

## Latest update on Screening of Sickle Cell incidences in States as on 25.07 .2016by M/oTriabal Affairs

| Name of the State   | Total Target for screening of ST persons   | Total number of persons screened as on date   | Total number of persons screened as on date   | Total number of persons screened as on date   | Total number of persons screened as on date   |
|---------------------|--------------------------------------------|-----------------------------------------------|-----------------------------------------------|-----------------------------------------------|-----------------------------------------------|
|                     |                                            | Trait                                         | Disease                                       | Normal                                        | Total                                         |
| Andhra Pradesh      | 556551                                     | 57                                            |                                               | 94718                                         | 94775                                         |
| Arunachal Pradesh   | 310091                                     | 108                                           |                                               | 155923                                        | 156031                                        |
| Assam               | 1086682                                    | NR                                            | NR                                            | NR                                            | 0                                             |
| Bihar               | 400000                                     | 00                                            | 00                                            | 464                                           | 464                                           |
| Chhattisgarh        | 2115603                                    | 21267                                         | 590                                           | 151036                                        | 172893                                        |
| Goa                 | 27123                                      | NR                                            | NR                                            | NR                                            | 0                                             |
| Gujarat             | 8644928                                    | 729561                                        | 29266                                         | 7886101                                       | 8644928                                       |
| Himachal Pradesh    | 24717                                      | -                                             |                                               | 56                                            | 56                                            |
| Jammu & Kashmir     | 348443                                     | NR                                            | NR                                            | NR                                            | 0                                             |
| Jharkhand           | 1700000                                    | 09                                            | 03                                            | 288                                           | 300                                           |
| Karnataka           | 825917                                     | NR                                            | NR                                            | NR                                            | 0                                             |
| Kerala              | 148180                                     | 2042                                          |                                               | 146138                                        | 148180                                        |
| Madhya Pradesh      | 1352353                                    | 611                                           | 312                                           | 385365                                        | 386288                                        |
| Maharashtra         | 3153063                                    | 169191                                        | 14141                                         | 1188426                                       | 1371758                                       |
| Manipur             | 90000                                      | NR                                            | NR                                            | NR                                            | 0                                             |
| Meghalaya           | 813828                                     | NR                                            | NR                                            | NR                                            | 0                                             |
| Mizoram             | 271083                                     | NR                                            | NR                                            | NR                                            | 0                                             |
| Nagaland            | 385122                                     | NR                                            | NR                                            | NR                                            | 0                                             |

## Annexure 'A'

| Odisha            | 2500000                                  | 25461                                       | 2999                                        | 102101                                      | 130561                                      |
|-------------------|------------------------------------------|---------------------------------------------|---------------------------------------------|---------------------------------------------|---------------------------------------------|
| Rajasthan         | 4188056                                  | --                                          | --                                          | 1800                                        | 1800                                        |
| Name of the State | Total Target for screening of ST persons | Total number of persons screened as on date | Total number of persons screened as on date | Total number of persons screened as on date | Total number of persons screened as on date |
|                   |                                          | Trait                                       | Disease                                     | Normal                                      | Total                                       |
| Sikkim            | 55902                                    | NR                                          | NR                                          | NR                                          | 0                                           |
| Tamil Nadu        | 201323                                   | NR                                          | NR                                          | NR                                          | 0                                           |
| Telangana         | 125304                                   | 617                                         | 617                                         | 22775                                       | 23392                                       |
| Tripura           | 287011                                   | 68                                          | 68                                          | 123324                                      | 123392                                      |
| Uttar Pradesh     | 620000                                   | 0                                           | 0                                           | 105                                         | 105                                         |
| Uttarakhand       | 74260                                    | 0                                           | 0                                           | 282                                         | 282                                         |
| West Bengal       | 847673                                   | 62                                          | 62                                          | 226                                         | 288                                         |
| Total             | 31153213                                 |                                             |                                             |                                             | 11257293                                    |

NR -Not reported.

Annexure'B'

| Budget allocated to States for Sickle Cell By M/o HealthandFWunderNHM   | Budget allocated to States for Sickle Cell By M/o HealthandFWunderNHM   | Budget allocated to States for Sickle Cell By M/o HealthandFWunderNHM   | Budget allocated to States for Sickle Cell By M/o HealthandFWunderNHM   |
|-------------------------------------------------------------------------|-------------------------------------------------------------------------|-------------------------------------------------------------------------|-------------------------------------------------------------------------|
| S. No.                                                                  | Year                                                                    | Sickle Cell 0                                                           |                                                                         |
| 1                                                                       | 2012-13 2013-14                                                         |                                                                         |                                                                         |
| 1                                                                       |                                                                         | 102.34                                                                  |                                                                         |
| 1                                                                       | 2014-15 2015-16                                                         | 849.24 702.18                                                           |                                                                         |
| 1                                                                       |                                                                         | 1653.76                                                                 |                                                                         |
| 2                                                                       |                                                                         | 17.28 50.42                                                             |                                                                         |
| 2                                                                       | 2009-10                                                                 |                                                                         |                                                                         |
| 2                                                                       | 2010-11 2011-12 2012-13                                                 | 200                                                                     |                                                                         |
| 2                                                                       |                                                                         | 0 1244.91 0                                                             |                                                                         |
| 2                                                                       | 2013-14 2014-15 2015-16                                                 |                                                                         |                                                                         |
| 2                                                                       |                                                                         | 1512.61                                                                 |                                                                         |
| 3                                                                       | 2012-13                                                                 |                                                                         |                                                                         |
| 3                                                                       |                                                                         | 173.11 197.11 237.62                                                    |                                                                         |
| 3                                                                       | 2013-14                                                                 |                                                                         |                                                                         |
| 3                                                                       | 2014-15 2015-16                                                         |                                                                         |                                                                         |
| 3                                                                       |                                                                         | 249.61 857.45 1803.52                                                   |                                                                         |
| 8                                                                       |                                                                         | 1801.9                                                                  |                                                                         |
| 8                                                                       | 2012-13                                                                 |                                                                         |                                                                         |
| 8                                                                       | 2013-14 2014-15 2015-16                                                 |                                                                         |                                                                         |
| 8                                                                       |                                                                         | 2152                                                                    |                                                                         |
| 8                                                                       | 2016-17                                                                 | 1994.05 1140.89                                                         |                                                                         |
| 8                                                                       |                                                                         | 8892.36                                                                 |                                                                         |

## Statement Showing funds approved by PAC for Sickle Cell Anemia under Art.275(1) & SCA to TSP for 2014-15 and 2015-16 (Rs. In lakh)

| S.NO.   | Name of State     | Funds sanctioned for Sickle cell anemia   | Funds sanctioned for Sickle cell anemia   |
|---------|-------------------|-------------------------------------------|-------------------------------------------|
|         |                   | 2014-15                                   | 2015-16                                   |
| 1       | Andhra Pradesh    | -                                         | -                                         |
| 2       | Assam             | -                                         | -                                         |
| 3       | Arunachal Pradesh | 100.00                                    | 150.00                                    |
| 4       | Bihar             | -                                         | -                                         |
| 5       | Chhattisagarh     | 249.60                                    | -                                         |
| 6       | Goa               | -                                         | -                                         |
| 7       | Gujarat           | -                                         | -                                         |
| 8       | Himachal Pradesh  | -                                         | 25.00                                     |
| 9       | Jammu &Kashamir   | -                                         | -                                         |
| 10      | Jharkhand         | 200.00                                    | -                                         |
| 11      | Karnataka         | 200.00                                    | 51.00                                     |
| 12      | Kerala            | -                                         | 23.00                                     |
| 13      | Meghalaya         | 300.00                                    | -                                         |
| 14      | Mizoram           | -                                         | 80.00                                     |
| 15      | Maharashtra       | 100.00                                    | -                                         |
| 16      | Madhya Pradesh    | 1000.00                                   | 350.00                                    |
| 17      | Manipur           | 200.00                                    | 150.00                                    |
| 18      | Nagaland          | 50.00                                     | -                                         |
| 19      | Odisha            | -                                         | 700.00                                    |
| 20      | Rajasthan         | 300.00                                    | 53.27                                     |
| 21      | Sikkim            | -                                         | 6.50                                      |
| 22      | Tamil Nadu        | -                                         | -                                         |
| 23      | Tripura           | -                                         | 50.00                                     |
| 24      | Telangana         | 100.00                                    | 126.87                                    |
| 25      | Uttrakhand        | -                                         | -                                         |
| 26      | Uttar Pradesh     | 20.00                                     | -                                         |
| 27      | West Bengal       | -                                         | 250.00                                    |
|         | Total Rs.         | 2819.60                                   | 2015.64                                   |