Rare disease advocates in India are pushing for the Health Ministry to create a new fund for rare diseases. Additionally, they’re pushing for medicines and medical equipment used for these conditions to be exempt from both the goods and services tax (GST) (between 5 and 12%) and import duties (12%).

These advocates understand that in order for change to be enacted, government officials need to be educated on rare diseases and they need to be sensitized to the issues patients currently face. It’s estimated that right now only 3% of the population has a general knowledge of rare disease. Only one in every 20 rare disease patients in India ever receives the correct diagnosis for their illness.

As of now, there are only funds for a few specific diseases such as hemophilia and beta thalassemia. While this is progress, many rare patients are still left out of the conversation in the country. This includes patients facing some of the most serious conditions. Thankfully, advocacy groups aren’t backing down. Organizations have been holding talks with Union Health Ministers to discuss the issues. Unfortunately, they’ve been having these conversations for more than a decade.

Where We Are Now

Currently, the government is considering creating a crowdfunding option for patients. Advocates see it as a joke.

Additionally, the government has refused to create newborn screening centers in the country, despite pleas. Currently, a paltry 2% of children in the country undergo newborn screening.

With the National Policy for Rare Diseases on hold since 2018, it’s clear change is needed in the state and it’s needed fast. The good thing is, rare disease advocates aren’t lowering their voices. They will speak not only until they’re heard, but until substantive changes are made.

You can read more about this issue here.