In a joint statement, ImpactGuru.com Co-Founders Piyush Jain and Khushboo Jain said, “We applaud the government’s efforts to solve the issue of funding rare diseases and believe crowdfunding as one of the platforms for patients to receive funds whilst encouraging communities to donate for larger good under National Policy for Rare Diseases 2021”.
Donation crowdfunding platforms have changed people’s belief that how high the treatment cost is, there is enough generosity for people to find financing and receive access to quality healthcare.
The fundraisers in most of the events belonged to middle-class and lower-middle-class families that lacked access to high-cost gene therapy and other medicines, which are prescribed by Indian doctors for treating patients with rare diseases.
Over 80% of donations in 1200+ rare disease campaigns came from resident Indian donors. Among them, Mumbai based patients have raised the highest at INR 35 crore followed by patients residing in Bangalore, Ahmedabad, Hyderabad, and Delhi.
The single highest donation received on one of the rare disease fundraising campaigns was INR 56 lakh. A record-breaking event was witnessed in one of the rare disease crowdfunding campaigns where 265,000+ Indian donors contributed towards achieving the goal amount. Printing the QR Code on T-Shirts is the innovative method used for obtaining donations.
Social Media platforms such as Facebook, Instagram, Whatsapp, LinkedIn, and Twitter also provided a secure channel for receiving donations from generous well-wishers online. Apart from that, Paytm and Google Pay were also used.
At present treatments for rare genetic diseases are not covered by health insurance companies and also lack support from government schemes.
Effective provisions should be made for lower-income and middle-class patients who are not covered under any government or private insurance. These online fundraising platforms are very well equipped to help bridge the gaps in the lifelong treatment for rare diseases.