According to a story from CheckOrphan, a wide array of experts are raising concerns about India’s rare disease policy, which was first unveiled in May of 2017. Despite being hailed as a major advancement for the rare disease community in the country (which may consist of nearly 100 million people), it doesn’t appear as if much has been done to put the law into action.
A Kick Start for Taking Action?
To be sure, the National Rare Disease Policy, as the new law was deemed, was only going to be the first initial step in helping resolve the rare disease problem in the country. The policy placed a total of $12.86 million in funding towards rare genetic disorders. However, even this meager first step has seen no actionable progress. At this juncture, even Indians that have rare diseases with available treatments are often unable to benefit from them because of the extreme costs. This problem is compounded by the fact that there are no manufacturers of rare disease drugs in the country, so all patients are stuck relying on imported drugs instead.
The policy was intended to initiate a funding mechanism that would help rare patients gain access to treatments that they otherwise could not afford. This included an arrangement where the Central government would cover 60 percent of costs and state governments would cover the remaining 40 percent.
Willful Neglect
The delay in the implementation of the law is of serious concern for the rare disease patient community in India. Many are in dire need of treatment, are being undertreated, or haven’t even been diagnosed yet. There isn’t a real timeline that patients can look to either; no one familiar with the policy has stated that the delay is the result of preparations that are needed beforehand. It is starting to look like the policy has simply been overlooked and forgotten.
This delay just feels like another example of the rare disease community being ignored. The lack of public awareness about rare diseases appears to have translated to the halls of India’s government. When the rare disease community in the country will start to see some action on the issue is anyone’s guess.
