Will the Government Step Up for the Rare Disordered Kids?

Newborn screening has been a slow turtle for the Indian government in spite of central pilot programs and establishment of Rashtriya Bal Suraksha Karyakram (RBSK) by the same government in 2005. While we intensively discussed with Mr Vikas Bhatia about what he thinks is lacking in India and how it can be improved, he mentions a number of factors that are and could be hampering the centralised implementation of the scheme. He acutely points out that if the government makes newborn screening a mandated policy like the vaccination program, the nation will have no choice but to execute it. During this discussion, he shares his vision for rare disorders with us. He strongly believes that if every state has a hospital dedicated to rare diseases, it will ease the process of centralised screening and also will become a one-stop solution for parents who are looking for special help for their children with rare disorders. Listen to Mr Bhatia’s opinions on the policy for newborn screening in the following audio.

* Click here for the summary of the audio

After Mr Bhatia, when asked about how the central government can direct the course of centralising a newborn screening program, Dr Meenakshi Bhat feels that for anything to be effective, it should be a national program and only when we start anything can we know how to moderate it to optimisation.

“Having a Central Directive and a State Execution is the way forward for Centralising Newborn Screening on a mode that is equivalent to the Universal Immunisation Program”

– Dr Meenakshi Bhat

“Every life counts”, is one message Mr Bhatia wants to convey to the government while he works towards helping families with children having rare disorders. He wants the medical fraternity to treat every family with a rare disorder as a case of the ICU. He also suggests every hospital have a separate section in their NICU that attends to children that have screened positive to any of the panel of tests during the newborn screening protocol.

Following up on this discussion of how the healthcare sector is one of the major stakeholders in implementing the scheme, Dr Bhat feels that doctors become pivotal in implementing newborn screening in hospitals whereas the involvement of Accredited Social Health Activists (ASHA) workers at district hospitals and Primary Healthcare Centers (PHCs) become crucial in penetrating to rural areas.

While we discuss how stakeholders of newborn screening have to be team players to indeed tell more people about it and get them on board for testing, Mr Thomas Mookken, CEO of NeoGen Labs Pvt. Ltd. is very optimistic about newborn screening gaining better critical acclaim in India in the near future.

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