As we know, many treatments for rare diseases are quite expensive – and this price doesn’t even factor in travel, lodging, appointments, and more. To help with this, the government in India had established a crowdfunding initiative to help rare disease patients afford their treatment. While 280 people have applied – 50 of whom have urgent cases – there has been little response from the government.

Waiting on Crowdfunding

The proposal for the crowdfunding plan went like this: individuals and companies can donate to help with long-term care for rare disease patients. The donor can specify whether they want their money to go towards the patient themself or the institution responsible for the treatment. The condition is that the money will go towards a one-time, Group 1 treatment. Qualifying patients are to receive up to Rs 20 lakh (over $25,000 USD).

The problem with it? Patients are dealing with extremely slow responses from the government. There are a number of patients who are struggling with this, whose stories were shared by MSN.

Chitranshu Yadav, a ten-year-old from Jaipur district, lives with Gaucher disease types I and III. According to his father, his treatment costs over Rs 81 lakh (more than $100,000 USD), which is why they’re depending on the crowdfunding plan for help. They registered back in 2021, but there’s been no aid provided.

Another rare disease patient, Pratham Gupta, has Duchenne muscular dystrophy (DMD). The treatment is an injection of Exondys 51 (eteplirsen), which costs around Rs 1 crore (nearly $128,000 USD). Similar to Chitranshu, there has been no help, and both situations are dire – DMD and Gaucher are progressive disorders.

At the time of this article, Rs 1.18 lakh (around $1,500 USD) has been raised through the government’s program. This is a minute amount, especially when compared to similar initiatives, such as the Bengaluru-based crowdfunding platform, Milaap, which has raised Rs 1,978 crore (over $250,000 USD).

Now, there are calls for more action from the government. Advocates, patients, caregivers, and supporters are calling for more commitment to the rare disease community from the government.