According to a story from the Pharma Letter, the Indian government has decided to take some steps to make rare disease and orphan drugs more affordable for its citizens. The prices of these drugs are often prohibitively high for many people, and these new measures should significantly increase access to these treatments. This has the potential to make life for rare disease patients in India easier.
The Indian government first implemented policy for rare diseases last year, and it has set aside a $14 million fund dedicated to rare disease related causes. These funds are directly mostly towards genetically linked illnesses such as lysosomal storage diseases. The government is also in the process of developing a rare disease patient registry. India is also taking the step of cutting trade margins on rare disease drugs to 30 percent. This is important because the vast majority of rare disease drugs must be imported from other countries. Prices for rare disease treatments can be over $500,000.
There are several drug developers that have charitable access programs in India, but these can only provide treatment for a very small fraction of the rare disease patient population in a country who overall population of over a billion people. The latest in statistical analysis suggests that almost 100 million people in India are affected by rare disease.
Prasanna Shirol, who is the director of the Organization for Rare Disease India, emphasizes that rare disease poses a major public health hurdle in the country. The Organization for Rare Disease India is a nonprofit patient advocacy group.
A government official remarked on orphan drug programs in Europe and the U.S., which provide useful incentives for drug developers to begin designing treatments for rare diseases. It is possible that India may adopt a similar program at some point in the future.
Meanwhile, the governments of several states in India have begun initiatives to address rare diseases. For example, in Delhi, a Rare Disease Board is set to be formed in order to review patient information and formulate strategies for improving treatment access. In Tamil Nadu, the government there has planned the construction of a center specifically for the diagnosis of rare disease.