Lok Sabha Question No. 3237 (UNSTARRED), answered on 2021-12-17
Subject: Thalassaemia Patients
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Vellalath Kochukrishnan Nair. Sreekandan

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

## LOK SABHA UNSTARRED QUESTION NO. 3237 TO BE ANSWERED ON 17 TH  DECEMBER, 2021

## THALASSAEMIA PATIENTS

## 3237. SHRI V.K. SREEKANDAN:

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

- a) whether the Government is aware that Thalassaemia patients across the country are facing difficulties to get life saving iron chelation injection due to its shortage;
- b) if so, the steps taken by the Government to improve the supply of such injection and address the shortage;
- c) whether  the  Government  has  taken  note  that  there  are  no  medicines  for  sickle  cell anaemia due to which many infant children lost their lives at Attappadi in Palakkad district in Kerala; and
- d) if so, the steps taken by the Government in this regard?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (DR. BHARTI PRAVIN PAWAR)

(a) & (b): No such information regarding the Thalassaemia patients across the country facing difficulties to get life-saving iron chelation injection due to its shortage have been reported to this Ministry. Also, National Pharmaceutical Pricing Authority (NPPA) has not received any complaints regarding shortage of the iron chelation injection used for treating thalassaemia from State Drug Controller/Non-Government Organization (NGO)/Individuals.

Further, various drugs containing iron chelating agents are approved for thalassaemia under Drugs & Cosmetic Act 1940 & Rules there under.

- (c)  &  (d):  Public  Health  and  Hospitals  being  a  state  Subject,  the  primary  responsibility  of management of sickle cell anaemia lies with the respective State Governments.

The blood transfusion services comprise of 3500 licensed blood centers across all States and sectors,  of  which  Govt.  of  India  supports  1131  blood  centers,  by  way  of  equipment  (one time),  manpower  and  consumables,  including  blood  bags  and  testing  kits.  As  per  the Guidelines  for  recovery  of  processing  charge  for  Blood  &  Blood  Components  issued  by Department of AIDS Control, Ministry of Health and Family Welfare, Government of India, in February 2014, it is mandatory for all blood banks to provide blood/blood component free of cost to the patients of Thalassaemia, Haemophilia, sickle cell anaemia and any other blood dyscrasia requiring repeated blood transfusions as a life saving measure. There are two blood centers in the Palakkad district in Kerala, supported by Government of India namely District Hospital, Palakkad and Taluk Head Quarters Hospital, Mannarkkad, Palakkad.

Under National Health Mission (NHM), support is provided to States/Union Territories (UTs) to strengthen their healthcare system including support for management of Thalassaemia and sickle cell anaemia patients at public healthcare facilities, for low income patients, based on the  proposals  submitted  by  the  States/UTs  in  their  respective  Programme  Implementation Plan. The details of the Interventions under NHM is annexed.

## Details of the Interventions under NHM are as given under:

-  Comprehensive  Guidelines  on  Prevention  and  Control  of  Hemoglobinopathies  in India  -  Thalassemias,  Sickle  cell  Disease  and  other  variant  Haemoglobins  (2016) have been developed  and shared  with  the  States/UTs.  These  guidelines  provide  for screening of every pregnant woman during Ante natal checks, pre-marital counselling at the college level and one time screening for variant anaemia for children in Class VIII, new-born screening as well as prenatal diagnosis. The guidelines emphasize on management of thalassaemia and sickle cell anemia and advise free blood transfusion and iron chelation drugs to patients.
-  Iron-chelation therapy and Iron chelation drugs for patients.
-  To prevent the risk of having an affected child, health education is directed towards school children, the public and health providers.
-  Upgradation  of  Blood  banks  in district hospitals with facility  for  component separation, availability of leuko-reduced red blood cells (less than 7 days old).
-  Special trainings of technicians of new blood banks for quality assurance.
-  Facilitating linkages with Medical colleges for trouble shooting.
-  Promotion of regular voluntary blood donation to augment the blood availability.
-  Blood collection and transportation vans with dedicated Human resource.
-  Day care centers in transfusion and Management Facilities for Thalassaemia Patients.
-  Preparation of National registry of Patients taking blood transfusion and identification & development of rare group donor registry for the Thalassaemia Patients at the blood banks through e-raktkosh.
-  The  Ministry  has  in  collaboration  with  Coal  India  Limited,  Ministry  of  Coal  is coordinating  Bone  Marrow  Transplant  (BMT)  free  of  cost  for  poor  Thalassaemic children as a Corporate Social Responsibility (CSR) Initiative.