Lok Sabha Question No. 2014 (UNSTARRED), answered on 2019-11-29
Subject: UMMID
Ministry: SCIENCE AND TECHNOLOGY
Asked by: S. Ramalingam, Shrirang Appa Barne, Heena Vijaykumar Gavit, Vinayak Bhaurao Raut, V. Kalanidhi, Andimuthu Raja, DNV Senthilkumar. S., Manne Srinivas Reddy, Hemant Patil

## GOVERNMENT OF INDIA MINISTRY OF SCIENCE AND TECHNOLOGY DEPARTMENT OF BIOTECHNOLOGY

## LOK SABHA UNSTARRED QUESTION NO. 2014 TO BE ANSWERED ON 29.11.2019

## UMMID

2014. SHRI RAMALINGAM S.:

SHRI SHRIRANG APPA BARNE:

DR. HEENA GAVIT:

SHRI VINAYAK RAUT:

DR. KALANIDHI VEERASWAMY:

SHRI A. RAJA:

DR. DNV SENTHILKUMAR S.:

SHRI MANNE SRINIVAS REDDY:

SHRI HEMANT SRIRAM PATIL:

Will the Minister of SCIENCE AND TECHNOLOGY िव²ान और ÿौīोिगकì मं ýी be pleased to state:

- (a) whether  Government  is  aware  that  congenital  and  hereditary  genetic  diseases  are becoming  and  significant  health  burden  in  India,  if  so,  the  details  thereof  and  the corrective action taken in this regard;
- (b) the estimated number of children that are born with hereditary diseases every year in the country, State/UT-wise;
- (c) whether the Government has launched 'Unique Methods of Management and treatment of  Inherited  Disorder  (UMMID)'  initiative  to  tackle  the  menace  of  genetic  disease  in newborns,  if  so,  the  details  thereof  along  with  the  aims,  objectives  and  the  features thereof;
- (d) the details of the targets set, funds sanctioned/released and number of National Inherited Diseases  Administration  (NIDAN)  Kendras/training  centres  likely  to  be  established under  the  First  Phase  of  the  said  initiative  including  in  rural  areas,  State/UT-wise including Tamil Nadu;
- (e) whether Government has identified the number of districts in the rural areas where these Kendras are likely to be started, if so, the details thereof along with the number of people who are likely to be the beneficiaries in this initiative; and
- (f) the further steps taken by the Government to help the future generation in treating and preventing these diseases caused by genetic disorders?

## ANSWER

## MINISTER FOR HEALTH AND  FAMILY WELFARE; MINISTER FOR SCIENCE AND  TECHNOLOGY; AND MINISTER OF EARTH SCIENCES (DR. HARSH VARDHAN)

- (a) & (b) Yes, congenital and hereditary genetic diseases are a significant health burden in India.  Based  on  the  data  published  in  the  journal  'Community  Genetics'  (2002;  5  (3):

192-6), an estimated 495,000 infants with congenital malformations, 390,000 with G6PD deficiency,  21,400  with  Down  syndrome,  9,000  with β-thalassaemia,  5,200 with sickle cell  disease,  and  9,760  with  amino  acid  disorders  are  born  each  year  in  the  country. Considering these facts, National Policy for Treatment of Rare Diseases was announced in June 2017 by Ministry of Health & family Welfare, Govt. of India. However, in the light  of  new  information  and  updates  available  for  further  improvement  and  effective implementation,  Central  Govt.  has  decided  to  review  this  policy  and  through  Gazette notification dated 18.12.2018 kept this policy in abeyance till the revised policy is issued by the Central Govt. or till further order whichever is earlier.

- (c) Yes,  the  Department  of  Biotechnology  (DBT),  Govt.  of  India    has  recently  launched Unique  Methods  of  Management  of  Inherited  Disorders  (UMMID)  initiative  with  the objectives i) to establish Genetic Diagnostic Units in Government Hospitals wherein the influx of patients is more, ii) to produce skilled clinicians in the area of Human Genetics, and  iii)  to  do  pilot  scale  screening  of  pregnant  women  and  new  born  babies  for diagnostics  of inherited genetic  diseases  in some  aspirational  districts  to  provide comprehensive clinical care (diagnosis, management, multidisciplinary care, counselling, prenatal testing).
- (d)  &  (e) Under  UMMID  initiative,  following  projects  have  been  sanctioned  as  a  pilot initiative:
- (i) Five Genetics LabsNIDAN Kendras (National Inherited Disorders AdministratioN Kendras) have been sanctioned to provide comprehensive clinical care including diagnosis, management, multidisciplinary care, counseling, prenatal testing at following Government hospitals
- (ii) Seven Training Centres at following institutions/ hospitals have been supported to provide  training  in  Biochemical  Genetics,  Cytogenetics,  Molecular  Genetics, Clinical  Genetics  and  Comprehensive  clinical  care  to  the  clinicians  working  in Government hospitals
- (iii) Under the program, seven Aspirational Districts namely Mewat, Haryana; Yadgir, Karnataka;  Haridwar,  Uttarakhand;  Washim  &  Nandurbar,  Maharashtra;  Ranchi, Jharkhand; Shrawasti, Uttar Pradesh have been identified for screening of 10,000 pregnant  women  and  5000  new  born  babies  per  year  in  each  districts  for diagnostics  of  inherited  genetic  diseases  to  provide  comprehensive  clinical  care including  diagnosis,  management,  multidisciplinary  care,  counseling,  prenatal testing.
- (f) Nidan Kendras established and clinicians trained through UMMID initiative will cater to the need of treating and preventing diseases caused by genetic disorders across the country.

|   S. No. | State       | Implementing Institution                      |   Sanctioned cost (Rs. in Crores) |   Released amount (Rs. in Crores) |
|----------|-------------|-----------------------------------------------|-----------------------------------|-----------------------------------|
|        1 | West Bengal | NRS Medical College, Kolkata                  |                              1.5  |                              0.81 |
|        2 | Rajasthan   | AIIMS Jodhpur                                 |                              1.47 |                              1.15 |
|        3 | Delhi       | Army Hospital Research & Referrals, New Delhi |                              1.41 |                              1.08 |
|        4 | Delhi       | Lady Harding's Medical College, New Delhi     |                              4.58 |                              2.19 |
|        5 | Telangana   | NIMS, Hyderabad                               |                              1.58 |                              1.19 |

|   S. No. | State         | Implementing Institution        |   Sanctioned cost (Rs. in Crores) |   Released amount (Rs. in Crores) |
|----------|---------------|---------------------------------|-----------------------------------|-----------------------------------|
|        1 | Tamil Nadu    | Madras Medical Mission, Chennai |                              0.48 |                              0.28 |
|        2 | Uttar Pradesh | SGPGIMS, Lucknow                |                              3.95 |                              1.48 |
|        3 | Telangana     | CDFD, Hyderabad                 |                              3.95 |                              1.48 |
|        4 | Delhi         | AIIMS, New Delhi                |                              4.41 |                              1.68 |
|        5 | Delhi         | MAMC, New Delhi                 |                              4.41 |                              1.55 |
|        6 | Maharashtra   | NIIH, Mumbai                    |                              3.95 |                              1.48 |

| 7.   | Tamil Nadu   | CMC, Vellore   | 3.93   | 1.73   |
|------|--------------|----------------|--------|--------|

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