Lok Sabha Question No. 266 (STARRED), answered on 2019-12-06
Subject: Treatment for Rare Diseases
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Balashowry Vallabbhaneni

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

## LOK SABHA STARRED QUESTION NO. 266 TO BE ANSWERED ON THE 6 TH DECEMBER , 2019 TREATMENT FOR RARE D ISEASES

## *266. SHRI BALASHOWRY VALLABHANENI:

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

- (a) the details of people suffering from Thalassemia, Hemophilia and Sickle Anaemia in the country, State/UT - wise;
- (b)  whether  diseases  such  as  the  above  are  considered  to  be  of  r arest  of  rare category and if so, the details thereof;
- (c) whether the Government provides free treatment and care to all those wh suffering  from  above  diseases,  if  so,  the  details  thereof  and  if  not,  th therefor;
- (d)  whether  the  Ministry  has  put  income  limit  in  providing  free  treatme Hemophilia patients; and
- (e) if so, the reasons therefor and efforts being made by the Government to this income limit?

## ANSWER THE MINISTER OF HEALTH AND FAMILY WELFA RE (DR. HARSH VARDHAN)

- (a) to ( e):  A statement is laid on the Table of the House

## STATEMENT REFERRED TO IN REPLY TO LOK SABHA STARRED QUESTION NO. 266* FOR 6 TH DECEMBER , 2019

( a) &(b) Data base of people suffering from Thalassemia, Sickle cell anemia hemophilia  State/UT wise  is  not maintained  centrally.  However  as  per  the Information received from National Institute of Immunohematology - an Institute of Indian  Council  of  Medical Research  (ICMR),  Haemoglobinopathies  are  the commonest single gene disorders. Overall the carrier rate of Beta - thalassemia is 1 -17%, and of Sickle CellAnemia is: 0 -35%. It is estimated that every year 10,000 -12,000 children are born with Beta -Thalassemia and more than 5000 with sickle cell disease.

Hemophilia,  a  hereditary  bleeding  disorder  is  prevalent  amongst  one every 10,000 males. Considering the 1.3 billion population of India, the ex no. of Hemophilics patient would be 1.3 lakhs.

(c),(d)&(e)  Public  health  and  Hospitals  being  a  state Subject,  the  primary responsibility  of  providing  free  treatment  and  care  to  the  people  sufferi above  diseases  lies  with  the  respective  State  Governments. However, under National  Health  Mission  (NHM),  support  is  provided  to  the  States/UTs strengt hen  their  health  care  systems including  support  for  providing  free  blood, drugs for iron chelation, and Anti hemophilic factors, to patients sufferi Thalassemia, Hemophilia and Sickle Cell Anemia.  The support is provided ba on  the  proposals  subm itted  by  the  State/UT  Governments  annually  in  their Programme Implementation Plans.

Ministry of Health & Family Welfare also give financial assistance to patients for treatment of life threatening diseases at different hospitals Rashtriya Ar ogya Nidhi (RAN) and also the Health Minister's discretionary grant. The  category  of  treatment  support  provided  from  RAN  fund  includes  Bone Marrow Transplants for Thalassemia, Sickle cell diseases patients and corr surgeries for Hemophilia.

Coal Indi a Limited under its Corporate Social Responsibility (CSR) activ is supporting for Bone Marrow Transplants (BMT) of children of BPL famili suffering from thalassemia.

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