Lok Sabha Question No. 2029 (UNSTARRED), answered on 2017-12-29
Subject: Rare Diseases
Ministry: HEALTH AND FAMILY WELFARE
Asked by: SHIVAJI ADHALRAO PATIL, MAUSAM NOOR

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

## LOK SABHA UNSTARRED QUESTION NO. 2029 TO BE ANSWERED ON 29 th DECEMBER, 2017

## RARE DISEASES

## 2029. SHRI ADHALRAO PATIL SHIVAJIRAO: SHRIMATI MAUSAM NOOR:

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

(a)  whether  the  Government  is  aware of  the  prevalence  of  rare  genetic  disorders collectively identified as Lysosome Storage Diseases and if so, the details thereof;

(b) whether the Gover nment hasformulated a scheme that recommends genetic counseling, pre conception and antenatal screening to parents, if so, the details thereof;

(c)  whether  the  Government  has decided  to  formulate  a  comprehensive policy  regarding  the prevention and free ofcost treatment for rare disorders and if so, the time by which final decision is likely to be taken in this regard;

(d) whether the Government proposes to make budgetary allocations for patients suffering from rare genetic diseases and if so, the details thereof;

(e) whether screening for rare genetic diseases such as Phenylketonuria is mandatory at present; and

(f) if so, the details thereof and if not, the reasons therefor?

## ANSWER THE MINISTER OF STATE IN THE MINISTRY OF HEALTH AND FAMILY WELFARE (SMT. ANUPRIYA PATEL )

(a): An expert group constituted by the Ministry of Health & Family Welfare in March 20 suggested that amongst the estimated 7000 different rare diseases in the world, the Lys storage diseases (LSDs) and the Inborn err ors of metabolism (IEMs) are of immediate relevance in India. Currently, India doesn't have epidemiological data on rare diseases and consequently no comprehensive data on burden and prevalence of rare diseases and the associated morbidit mortality.

(b): No.

(c): The  Ministry  of  Health  and  Family  Welfare  has  formulated a  National  Policy  for treatment  of  Rare  Diseases  in  India to progressively build India's capacity  to  respond comprehensively to rare diseases covering areas of: prevention, awareness g eneratio , training of doctors, funding support for treatment on the parameters to be defined by a Central Te cum Administrative Committee, promotion of research and development for drugs for treatm of rare diseases and diagnostics at affordable prices and measures for making the drugs for rare diseases  more  affordable,  strengthening  of  laboratory  networks,  development  of C ntres  of Excellence etc. On the whole, the Policy seeks to strike a balance betwe en the interest of patients of Rare D iseases and health system sustainability. The Policy also recognises and delineates the role of various Ministries and departments in t he area of Rare D iseases.

(d): Funding mechanism as given in the National Policy for treatment of Rare Diseases in India is a s under:

- Setting up a corpus fund at Central level with the initial amount of Rs. 100 crore towards funding treatment of rare genetic diseases.
- Similar corpus at State level and contribution of funds by the Centre towa d s the state corpus to the ratio of 60:40 out of the central pool.
- It is up to the States to have a corpus of a larger amount. Requirement of funds b is as per PIP process.

(e) & (f): No. The National Policy calls for exploring the feasibility of a plan for providing and progressively scaling up pre - conception and antenatal genetic counseling and screening in a targeted manner, or otherwise, to provide option to parents to prevent conception or bi child with a rare genetic diseases.