Lok Sabha Question No. 345 (STARRED), answered on 2021-03-19
Subject: Scheme for Thalassemia Patients
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Kaushal Kishore, Maneka Sanjay Gandhi

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

## LOK SABHA STARRED QUESTION NO. 345 TO BE ANSWERED ON THE 19 TH MARCH , 2021 SCHEME FOR THALASSEM IA PATIENTS

## *345. SHRI KAUSHAL K ISHORE: SHRIMATI MANEKA SANJ AY GANDHI:

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

- (a) the details of Thalassemia patients in the country and the number, ou being children under the age of 12, State/UT - wise and particularly in Udaipur district, Rajasthan;
- (b) whether the Government has drafted any scheme for Thalassemia patients so, the details thereof;
- (c) the measures being taken by the Government to assist low income Thala patients who cannot afford the treatment;
- (d)  whether  the  Government  proposes  to  regulate  or  reduce  prices  of  ex Thalassemia drugs or medicines; and
- (e) if so, the d etails thereof?

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

- (a)to ( e)A Statement is laid on the Table of the House.

## STATEME NT REFERRED TO IN REPLY TO LOK SABHA STARRED QUESTION NO. 345* FOR 1 9 TH MARCH , 2021

(a) Thalassemia  is  one  of  the  inherited  disorders  of  red  blood  cells.  A information received from ICMR, Thalassemia is the commonest genetic disord India.  The  prevalence  of  β - Thalassemia  carrier  varies  from  1  to  17%  in  diffe population group s with an overall prevalence of 3 - 4%. It is estimated that almost 8,00 to 10,000 children are born with Thalassemia every year 1 . Details of patients sufferin from Thalassemia, State/UT wise are not maintained centrally. As per the Inf received fr om state of Rajasthan, there are 296 registered patients of Thalas Udaipur district and out of them, 256 are under the age of 12.

(b) & (c) Public Health and Hospitals being a state Subject,the primary respo of management of Thalassemia i ncluding initiation of schemes for thalassemia pat lies with the respective State Governments. However, under National Health (NHM), support is being provided to States/UTs to strengthen their healthcar including support for prevention and management of Thalassemia at public healthcar facilities, including for low income patients, based on the proposals submi States/UTs in their Programme Implementation Plans.

Under  NHM, Comprehensive  Guidelines  on  Prevention  and  Control  of Hemoglobinopathies in India - Thalassemia & Sickle cell Disease and other varia Hemoglobins (2016)  had  been  shared  with  States/UTs  to  assist  the  State management of Haemoglobinopathies including Thalassemia. This includes guide for prevention a nd management of Thalassemia affected children. Support is prov to  States  under  NHM  for  blood  transfusion  therapy  with  packed  red  blood (pRBCs) and Iron chelation.

Under  NHM,  1,074  blood  banks  and  1,699  blood  storages  have  been  mad operational , which provide blood services including packed red blood cells, fre cost including for Thalassemic patients. Further, 171 Integrated cen Hemoglobinopathies & Haemophilia (ICHH) Centres have been established in Dis Hospitals in high preval ence areas of the country to provide treatment.

(d) & (e) The National Pharmaceutical Pricing Authority (NPPA) has the mandat fix the ceiling price of scheduled medicines specified in the first schedule (Prices Control) Order, 2013 (DPCO) in accordance with the provisions of the DPCO All  manufacturers  of  scheduled  medicines  (branded  or  generic)  have  to  se products within the ceiling price (plus applicable Goods and S ervice Tax) fixed by the NPPA. A manufacturer is at liberty to fi x the maximum retail price of a non - scheduled formulation (branded or generic launched by it.  However, as per the DPCO, NPPA

monitors  that  the  manufacturers  of  non - scheduled  formulations  do  not  increase  th maximum retail price of such formulations by more than 10% per annum.

As  per  the  guidelines,  the  three  drugs  used  for  Iron  Chelation management of Thalassemia are Desferrioxamine, Deferiprone and Deferasirox. medicine- Desferrioxamine powder for injection 500 mg is a scheduled formul ation under DPCO 2013 and its ceiling price has been fixed. The detail of price no is available on the website of the NPPA i.e. www.nppaindia@nic.in

Further,  under  NHM,  States/UTs  are  supported  for  prov ision  of  three  Iron -chelation  drugs  viz  Desferrioxamine,  Deferiprone  and  Deferasirox  at  Public Facilities.

1 Reference: R. Colah, A.Gorakshakar, Anita Nadkarni, et al Regional hetero of  thalassaemia  mutations  in  the  multi  ethnic  India  popula tion.  Blood,  Cells  and Molecular Disease (2009) 242(3):241

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