In this conversation with Mr Vikas Bhatia, he emphasises the necessity of the government, medical fraternity and especially parents to become team players in tackling rare disorders. 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. He names Rashtriya Bal Suraksha Karyakram (RBSK), a policy introduced by the central government that includes newborn screening in its program. The topic of health is an issue of the state and the central government can only be an advisory to it.
A very important question being addressed here was the issue of central government not being able to implement a nationwide policy and so many states themselves not being able to bring in newborn screening to action. He reasons it out as a fact that Goa was the first government to implement newborn screening across its territory between 2008 and 2013 probably because it is a small constituency. Kerala is another state that has made screening mandatory for hearing loss, Critical Congenital Heart Defects (CCHD), Phenylketonuria (PKU), Congenital Hypothyroidism (CH), Congenital Adrenal Hyperplasia (CAH). Numbers for rare disorders in Goa and Kerala are 1 in 660 and 1 in 882 respectively which makes it a substantial reason for them to conduct the program. Some hospitals across India such as JK Lon Hospital, Jaipur (1 in 350), Chandigarh Medical College, Chandigarh and Sanjay Gandhi Hospital, Bangalore (stopped at present due to technical issues) has made newborn screening mandatory. Talking about uniformly implementing a set of tests across the nation, Mr Bhatia points out that each state has its own set of needs that they need to cater to. It could be the custom set of diseases that need immediate attention or the availability of infrastructure but not the lack of attention towards implementation. He names few other pilot studies such as the ones in Chennai, Vellore and many places in Andhra Pradesh and Manipal.
The reason people are not prioritising rare disorders in the country according to Mr Bhatia is that they are rare and the medical fraternity has many more pressing issues to address. Thus, he shares his vision of having rare disease hospitals and clinics in every state which will cater to the needs of the affected families. He is very optimistic about such institutions coming up to specially attend to rare disorders in the near future. As Dr Rajani points out that it is important for the scientific community, medical fraternity or any other stakeholder to understand the needs of the society and work towards solving such pressing issues, Mr Bhatia reassures him that it is exactly the kind of approach that is necessary to help people. This is because he feels that India is under no dearth of money to be executing many policies to improve the healthcare status in India especially when these special children are not covered under any medical insurance to be managed or treated for.