Lok Sabha Question No. 1509 (UNSTARRED), answered on 2016-03-04
Subject: Sickle Cell Disease
Ministry: HEALTH AND FAMILY WELFARE
Asked by: PONGULETI SRINIVASA REDDY, RATTAN LAL KATARIA

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

## LOK SABHA UNSTARRED QUESTION NO. 1509 TO BE ANSWERED ON 4 TH MARCH, 2016

## SICKLE CELL DISEASE

## 1509. SHRI PONGULETI SRINIVASA REDDY: SHRI RATTAN LAL KATARIA:

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

(a)  whether  a  large  number  of  children  are suffering  from  anemia,  Thalassemia,  sickle cell anemia disorder and hemophilia in the country; if so, the details thereof and the number of su ch children  in  the  country  during the  last  three  years,  State/UT - wise  along  with the  survey conducted if any in this regard;

(b)  whether  the  Government  has  provided any  financial  assistance  for  the  prevention and elimination of these diseases by launching National Sickle Cell Anemia Control Programme and for setting up pre - natal counselling and early intervention centre to prevent the transfer of genetic diseases;

(c)  if  so,  the  details  thereof  along  with  the funds  allocated  and  expenditure  incurred  for prevention and control of the se diseases during the last three years, State - wise; and

(d) the other corrective measures taken/ being taken by the Government for tackeling the said diseases across the country particularly in the tribal areas?

## ANSWER THE

## MINISTER OF HEALTH AND FAMILY WELFARE (SHRI JAGAT PRAKASH NADDA)

( a): The  number  of  people  suffering  from  anemia,  thalassemia  and  haemophilia  in  th country, state/UT wise is not known in a definitive manner, as there is no central data such condit ions.  It is roughly estimated that there may be total of about one lakh perso with sickle cell anemia and with thalassemia and about 65,000 with haemophilia disease.

(b)& (c) : Public  Health  is  a  state  subject.    However  under  National  Health Mission, Government  of  India  provides  financial  support  to  the  States  to  strengthen  their  heal systems including system for handling blood disorders (Thalassemia, Haemophilia and Sic Cell)  based  on  the  proposals  submitted  by  the  State/UT  Governme nts  in  their  Programme Implementation  Plans.  Considering  the  burden  and  the  cost  of  management  and  for  suita control measures,  a comprehensive guideline for Haemoglobinopathies (thalassemia, sickle anemia and other variant anemia) has been prepare d by th  Government of India and sent to the states to initiate the prevention and management of  Haemoglobinopathies in their resp states.  This  also  includes  prenatal  counseling  and  setting  up  of  early  intervention  c prevent the transfer of the disease.

The  details  of  the  funds  allocated  to  the  states  during  last  thre e  years  is  enclosed  at annexure.

(d): The Rashtriya  Bal  Swasthya  Karyakrama  (RBSK)  recently  launched  under  National Health  Mission  (NHM),  provides  early  detection  and  treatme nt  of  children  suffering  from genetic  disorders.  Operational  Guidelines  have  been  issued  under  this  scheme  to  al States/UTs for Child Health screening and early intervention services. The diseases lik cell  anaemia,  Beta  Thalassemia  and  other  h ealth  conditions  are  covered  under  child  health screening up to the age of 18 years. State Government can submit proposals in this regard respective Programme Implementation Plans (PIPs) for consideration of assistance under N within their resou rce envelope.

To  help  in  tackling  the  management  of  said  diseases.    National  Blood  Transfus Council has issued a directive that blood banks should provide blood/blood components fr cost to the patients of Thalassemia, Hemophilia, Sickle cell anemi a and other blood dyscrasia (blood disease) requiring repeated blood transfusion.

| Budget allocated to states for Blood Disorders   | Budget allocated to states for Blood Disorders   | Budget allocated to states for Blood Disorders   | Budget allocated to states for Blood Disorders   |
|--------------------------------------------------|--------------------------------------------------|--------------------------------------------------|--------------------------------------------------|
| S.No.                                            | State                                            | Year                                             | Amount (in lakh)                                 |
|                                                  |                                                  |                                                  | Sickle Cell                                      |
| 1                                                | Gujarat                                          | 2013- 14                                         | 0                                                |
| 1                                                | Gujarat                                          | 2014- 15                                         | 25                                               |
| 1                                                | Gujarat                                          | 2015- 16                                         | 531.15                                           |
|                                                  | Total                                            | Total                                            | 556.15                                           |
| 2                                                | Chhattisgarh                                     | 2013- 14                                         | 1244.91                                          |
| 2                                                | Chhattisgarh                                     | 2014- 15                                         | 0                                                |
| 2                                                | Chhattisgarh                                     | 2015- 16                                         | 0                                                |
|                                                  | Total                                            | Total                                            | 1244.91                                          |
| 3                                                | Odisha                                           | 2013- 14                                         | 197.11                                           |
| 3                                                | Odisha                                           | 2014- 15                                         | 237.62                                           |
| 3                                                | Odisha                                           | 2015- 16                                         | 85.42                                            |
|                                                  | Total                                            | Total                                            | 520.15                                           |
| 4                                                | Maharashtra                                      | 2013- 14                                         | 1801.9                                           |
| 4                                                | Maharashtra                                      | 2014- 15                                         | 2152                                             |
| 4                                                | Maharashtra                                      | 2015- 16                                         | 1064                                             |
|                                                  | Total                                            | Total                                            | 5017.9                                           |
| 5                                                | Bihar                                            | 2013- 14                                         | 0                                                |
| 5                                                | Bihar                                            | 2014- 15                                         | 0                                                |
| 5                                                | Bihar                                            | 2015- 16                                         | 3. 5                                             |
|                                                  | Total                                            | Total                                            | 3. 5                                             |

Annexure