Lok Sabha Question No. 2116 (UNSTARRED), answered on 2021-12-10
Subject: Treatment of Rare Diseases
Ministry: HEALTH AND FAMILY WELFARE
Asked by: Jayanta Kumar Roy, Bhola Singh, Vinod Kumar Sonkar, Sukanta Majumdar, Sangeeta Kumari Singh Deo, Raja Amareshwara Naik

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

## LOK SABHA UNSTARRED QUESTION. NO.2116

## TO BE ANSWERED ON 10 TH  DECEMBER 2021

## TREATMENT OF RARE DISEASES

2116.             DR. JAYANTA KUMAR ROY:

SHRI BHOLA SINGH:

SHRI VINOD KUMAR SONKAR:

DR. SUKANTA MAJUMDAR:

SHRIMATI SANGEETA KUMARI SINGH DEO:

SHRI RAJA AMARESHWARA NAIK:

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

- (a) whether the Government proposes to set up a digital platform for crowd funding for the treatment of rare diseases;
- (b) if so, the details thereof and if not, the reasons therefore;
- (c) whether the Government maintains any comprehensive data on prevalence of rare diseases and  the  associated  morbidity/mortality,  if  so,  the  details  thereof  and  if  not,  the  reasons therefor;
- (d) whether the Government has notified the National Policy for Treatment of Rare Diseases, if so, the details thereof; and
- (e)  the  other  steps  being  taken  by  the  Government  to  provide  financial  assistance  to  poor patients of rare diseases?

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

(a)&(b): The Department of Health and Family Welfare has launched a Digital Portal for Crowd funding and Voluntary donations for Patients of Rare Diseases in accordance with the mandate of the  National  Policy  for  Rare  Diseases,  2021.  The  Digital  Portal  may  be  accessed  through https://rarediseases.nhp.gov.in/

(c): ICMR has initiated a National Registry wherein epidemiological data is being collected for rare diseases and other inherited disorders. Data of a total of 4001 rare diseases cases (Storage disorders, Small  meta  bone  inborn  error  of  metabolism,  primary  immune  deficiency  disorders,  skeletal dysplasia,  neuro  muscular  disorders,  hemoglobionopathies  and  bleeding  disorders)  have  been collected till 31 st October, 2021.

(d):  National  Policy  for  Rare  Diseases,  2021  (the  Policy)  has  been  finalized  and  put  in  public domain. The Policy can be accessed at website:https://main.mohfw.gov.in/documents/policy

(e):  On  the  basis  of  provisions  envisaged  under  National  Policy  for  Rare  Diseases,  2021,  with regard to providing financial assistance to the patients suffering from rare diseases, it is submitted that  for  the  diseases/  disorders  amenable  to  one  time  curative  treatment  (listed  under  Group  -1), financial support will be provided under umbrella scheme of RAN i.e. an amount upto Rs. 20 lakh only for entitled beneficiaries shall be provided by the Central Government. The diseases requiring long term / lifelong treatment having relatively lower cost of treatment    (listed under Group 2), the financial  support  is  envisaged  to  be  provided by  the  State  Governments.   The  diseases  for  which definite treatment is available but involves very high cost and lifelong therapy (listed under Group 3),  the  policy  provides  assistance  to  the  patients  by  creation  of  Digital  Platform  for  inviting voluntary  donations  from  individuals  and  corporate  donors.  Donors  will  have  a  choice  to  make donations to different Centres of Excellence (CoEs) and for the patients' treatment by these CoEs. Funds are to be utilized in a decentralised manner, i.e. every Centre of Excellence (CoE) will have its own Rare Disease Fund which is to be utilized with the approval of in charge concerned.