It is a herculean task to get insurance cover for rare diseases as they don’t usually exist for such patients.
With over 7000-8000 rare diseases, some of which have a costly treatment protocol while many others have no available cure at all, it becomes all the more difficult.
Here is a news story that may interest the rare disease community in India. The Indian Academy of Pediatric Surgeons (IAPS) has announced at its 47th annual conference that an insurance company has come forward to offer cover for ‘birth defects’, something which wasn’t there till now.
This used to lead to only one conclusion: termination of pregnancy. But, if an insurance cover is available, probably this may be taken care of in future!
Dr Amar Shah, joint secretary of IAPS, is quoted in Ahmedabadmirror.com saying, “Many expecting parents do not have the wherewithal to get their newborns treated for congenital defects, and as a result when the 20-week anomaly check is carried out through sonography, the determination of such malformation or defects leads to the child being medically terminated. The insurance cover system, if adopted by a multitude of companies, may help prevent these abortions.”
Though the new proposed insurance cover is not yet in the market, it needs to be seen whether it would cover hundreds of common as well as ‘rare genetic birth defects’ that leads to severe complexities.
Common birth defects, for instance, include cleft lip/ palate or heart defects, while rare birth defects are too many.
Some of them include Congenital hydrocephalus, Craniosynostosis, Dandy Walker malformation, Ehlers Danlos syndrome, Epidermolysis bullosa, Gorham’s disease, Hashimoto’s syndrome among others.
The terms & conditions of this policy – which needs a formal clearance from the Insurance Regulatory and Development Authority of India (IRDAI) – needs to be read in detail to understand more about the offering and the limits set by the insurance player.
It may be noted that in a Public Interest Litigation (PIL) case filed by Agra -based pediatric surgeon Sanjay Kulshrestha in Delhi High court in 2015 to demand an insurance policy for infants born with congenital defects, it was claimed in a report by Times of India that in India 5 lakh infants are born every year with congenital defects.
