Govt. platform to fund treatment of rare diseases comes a cropper

The Centre’s crowdfunding portal for rare disease treatment, launched in August 2021, has raised only a paltry sum of ₹349,281 till now. With 2,287 patients registered at the portal [rarediseases.mohfw.gov.in], 50 of whom are in urgent need of funds, families are turning to private crowdfunding platforms for help.

The digital platform was launched by the Health Ministry to facilitate voluntary donations from individuals or corporates for the treatment of patients battling rare diseases.

Abhishek Goel, a resident of U.P.’s Amroha, said his six-year-old son was diagnosed with Hunter syndrome, a genetic disorder. “My son’s name is registered with the portal but we have not received any help so far,” he said.

Kanika Singh, a gaucher disease patient, saw her enzyme replacement therapy at Delhi’s All India Institute of Medical Sciences (AIIMS) halted in November 2021 due to lack of funds. “I have several health issues, including spleen and liver enlargement, and bleeding,” she said, adding that patients like her are being deprived of essential treatment as resources are channelled toward more urgent cases.

Mohit Jain, a Delhi resident, said his 19-month-old son Vehant was diagnosed with spinal muscular atrophy (SMA) type 2, a rare genetic disorder that has rendered the child nearly immobile.

Mr. Jain has turned to private crowdfunding websites as the cost of the life-saving injection for Vehant is ₹17.5 crore, which is far more than the ₹50 lakh in financial assistance provided under the government’s rare disease policy. “Till now, we have received around ₹1 crore. AAP leader Sanjay Singh gave us ₹1 lakh and BJP leader Yogender Chandoliya gave ₹5 lakh,” he added.

Success stories

In May this year, a 23-month-old boy from Rajasthan with SMA received the ₹17.5-crore injection, marking the State’s first successful crowdfunding case, with the police department contributing over ₹5 crore as police personnel donated their one day’s salary.

In February last year, Sarang Menon, who is currently living in Mumbai, managed to secure ₹16 crore through private crowdfunding for the treatment of his 15-month-old son Nirvaan, who was diagnosed with SMA.

Mr. Menon said when he started private crowdfunding, initially the pace at which money came was slow. He said, “We were completely active on Instagram, Facebook, and other social media sites, and also interacted with the media, so that people knew more about the child.”

“One-time news will not help,” Mr. Menon advised other parents, adding, “From my experience, if 10 lakh people see your page, may be 5,000-6,000 people will come forward to help. So for us, reaching out to the crowd is the most important thing.”

Why govt. initiative failed

Manjit Singh, who lost two sons to Hunter syndrome, explained the failure of the government initiative. “There is no provision for Section 80G benefits [tax exemptions] for contributions made through the crowdfunding portal,” he said. 

The lack of corporate social responsibility (CSR) benefits to the firms contributing to the crowdfunding portal has been a long-standing issue. Mr. Singh recalled a meeting of stakeholders with then Union Health Minister Harsh Vardhan in 2021 to amend the rules, which could have enabled CSR contributions towards rare disease treatment. However, no changes have materialised, leaving many families to fend for themselves.

Court observation

On October 4, the Delhi High Court, which is hearing a batch of petitions for free treatment of rare diseases, observed, “Attempts towards crowdfunding for rare diseases have not been successful.”

It said the crowdfunding platform ought to be given adequate publicity and steps should be taken to attract funds for the treatment of patients with rare diseases. “There is a need to encourage special CSR funding, especially, if possible, by PSUs [public sector undertakings] and pharmaceutical companies,” the court said.

“Donations for rare diseases shall be added to Schedule VII of the Companies Act, 2013 to enable CSR contribution by companies, including PSUs,” the court said.

Published - October 09, 2024 01:06 am IST