Appeal
   Indian Scenario  
 In India, the health care priorities are still limited to reducing the Infant Mortality Rate and meeting basic infrastructure requirements.The Government of India is yet to have a mandatory screening program for newborn babies.We believe that every Newborn has a right to lead a healthy and normal life and the first step towards that is to get a Newborn Screening (NBS) Test.We Feel as the Newborn cannot speak for itself it is the responsibility of healthcare providers, the parents, the society and the government to make NBS available for every Newborn. We are sure that medical fraternity must be aware that besides communicable diseases there are almost less than equal number of newborns who are suffering because of-non-communicable diseases like treatable IEMs.
 
Treatable IEMs are those set of disorders which if detected & properly treated before the onset of symptoms can help a Newborn lead a very normal and healthy life. The only way to detect them is by routinely performing screening tests on 
all newborns (normal or otherwise).We think Apart from infectious diseases, IEMs could be the largest group of disorders, completely hidden from public and government eye.If we look around, may be many family could have lost or affected children in inexplicable circumstances, probably due to IEMs.
 
 
Diagnosis
 In center where-NBS is available and when it come positive , then confirmation of the diagnosis is required . here very less centers there with such facility .
 
Diet/ Medicine
 
There are several babies in India that are born with Inborn Errors of Metabolism.  
One of the crucial treatments for such babies is “Specialized Diets” 
 
 To List a few diseases for which Diets play a critical role are:
 
 Tyrosinaemia - Phenylketonuria - Maple Syrup Urine Disease - Methylmalonic & Propionic Acidemia - Urea Cycle Disorders- Isovaleric Acidemia – Glutaric Acidemia- Fatty acid oxidation disorders-   Ketogenic diet 
 
FSSAI to allow import of food for special medical purposes
FSSAI has initiated Diet4Life to help people understand about metabolic disorders.. It will provide a comprehensive platform to parents, Health care professionals and parent support groups to adopt the right approach towards Inborn Errors of metabolism (IEM) management.
Read more- http://diet4life.fssai.gov.in/index.html
 
 
Medicine : Not available in ordinarily medical stores easily  
 
1.Thiamine : Some time difficult
2.Sodium benzoate : many time Difficult 
3.Neonatal catheter for hemodialysis : Only at specialised stores
4.Glycine :only ( At special chemical stores )
5.Nitisinone : Difficult and costly (NOT Available )
6.Dichioroacetate : Difficult and costly (Not Available )
 
 MERD India urges various agencies involved in the improvement of Neonatal care to implement the following at the earliest
 
1. Mandate some form of Newborn Screening at a National level (preferably on the the guidelines issued by the National Neonatal Forum of India)
 
2. Create adequate infrastructure for mass screening programs.
 
3.. Create a National Newborn Screening Registry.
 
 4. Create adequate infrastructure to give best available treatment for IEMS and other genetic and Rare diseases.
 
5. We commend the step of clinical trials and request that the clinical trials be made as safe as possible for the patients suffering from metabolic and other rare diseases and for them to be conducted only by experts.

6. We request that the life saving diet and Drug that is required by the patients suffering from metabolic and other rare diseases be given sanctions for manufacturing in India for easy access with zonal centres being set up for easy availability.

7. Until the production for same starts in our country, we request for notification containing the names of the diet and being imported published on all ports and customs so that they are given clearance without any delay. We request the Government to not levy any GST and import taxes or duties on these diets because these are life saving diets being consumed for compassionate use. There is a need to publish such drugs and diets because of the lack of awareness at the ports of entry and amongst customs officials. This has led to products beingstalled at the ports of entry, thus leading to delay in the drugs arriving for use.


8. These life saving diets and Drugs are of utmost importance for the patients since many disease can not  be cured but only managed through these diets and Drugs.

9. Rare Disease centre in every state and union territory in main government hospital should be established and in the future clinical trials may be conducted in these hospitals.
Rare Diseases Policy 
https://main.mohfw.gov.in/sites/default/files/Final%20NPRD%2C%202021.pdf
 
  Please sincerely look into our Appeal and help to make our country a better and safer place for Newborns.

 

 

 

 

 

 

 

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