Lok Sabha Question No. 4457 (UNSTARRED), answered on 2020-03-20
Subject: Thalassemia Disorder
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Chhedi Paswan

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

## LOK SABHA UNSTARRED QUESTION NO. 4457 TO BE ANSWERED ON 20 TH MARCH, 2020

## THALASSEMIA DISORDER

## 4457. SHRI CHHEDI PASWAN:

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

- (a) whether Thalassemia a genetic disorder is very common in India, if so, the details thereof and thestrategy formulated by the Government for prevention of the disease;
- (b)  the  rules  prescribed  by  the  Governmen t  for Haploidentical  Stem  Cell  Transplant  to  cure Thalassemia;
- (c) whether the private hospitals are complying with the said r ules while treating Thalassemia patients, if so, the details thereof;
- (d) whether the Government has noted the incidents of death of two dozen children during the period 2016 to 2017, due to failure of the said procedure; and
- (e) if so, the details thereof and steps taken by the Government to curb such deaths?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (SHRI ASHWINI KUMAR CHOUBEY)

- (a) & (e): Thalassemia are one of the inherited disorders of red blood cells, comes unde category of Haemoglobinopathies, the other being the Sickle cell diseases.

Details  of  prevalence  of  Thalassemia  in  India  are  not  known  as  no  such  databas maintained  centrally.  As  per  the  information  received  from  ICMR,  New  Delhi,  an  estima 10,000 to 12,000 children with β - thalassemia are born every year and there are about 65,000 67,000 β - thalassemia patients in our country (Colah et al 2010, Colah et al, 2014).

Public  Health  and  Hospitals  being  a  state  subject,  the  primary  responsibili management  of  Thalassemia  including  the  preventive  measures  lies  with  the  respect ive  State Governments. However, under National Health Mission (NHM), support is being provided t States/UTs  to  strengthen  their  healthcare  system  including  support  for  prevention management  of  Thalassemia,  based  on  the  proposals  submitted  by  the  State s/UTs in  their Programme Implementation Plans.

Under NHM, comprehensive guidelines on Prevention and Control of Hemoglobinopathies in India: Thalassemia & Sickle cell Disease and other variant Hemoglob had been shared with States/UTs to initiate the prevention and management Haemoglobinopathies in their respective States. This includes guidelines for prevention carrier  screening,  genetic  counselling  and  prenatal  diagnosis  and  adequate  therapy for  those affected, helping them to lead better lives.

The Haploidentical transplant is a specialized procedure and cases of medical negli related to haploidentical transplants are regulated under the Professional Conduct, Etiq Ethics: Regu lations 2002 of Indian Medical Council.

As per the information received from Board of Governors in supersession of Medic Council of India (MCI), 10 complaints regarding the death of Thalassemia patients durin after transplant were received and an e xpert committee has been constituted by MCI to look into complaints. MoHFW will take appropriate action on receipt of the report from the MCI.