How India's National Program for Rare Diseases can help aHUS patients

Here are some important facts to know about the Indian Government's National Program for Rare Diseases (NPRD) can help aHUS patients.

National Program for Rare Diseases

This program, instituted by Ministry of Health and Family Welfare, offers financial help and access to care for rare disease patients. As of August 2024, 63 rare diseases were covered under this program. Atypical Hemolytic Uremic Syndrome (aHUS) is part of this list of diseases.

Three groups of rare diseases are covered by this program:

1. Diseases that can be cured with a one-time treatment
2. Diseases that need lifelong treatment but costs are low
3. Diseases that need lifelong treatment and costs are very high

aHUS comes under the third group.

Support offered by the government

The government will fund up to Rs. 50 lakh per patient for treatment. The government may offer extra flexibility for Group 3 cases like aHUS, based on the patient’s situation. No GST or customs duty will be levied on rare disease drugs imported for treatment.

Centres of Excellence

The government has identified a list of Centres of Excellence (CoE) which would be the nodal agencies to facilitate treatment under this program. Here is a list of the CoEs in different cities in India.

Things to do to avail the support from the government

Patients must speak to their doctors about registering with the NPRD at a Centre of Excellence. This would involve medical evaluation to confirm the diagnosis, some documentation which would included some tests, medical history etc. There is an application form that would need to be filled in. Once that is submitted, then patients would need to wait for the approval to come.