Appeal

1. Mandate some form of Newborn Screening at a National level 

 

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.