Voluntary crowdfunding for rare disease treatment was okayed by Centre, health minister informs Lok Sabha
The Union health ministry informed the Lok Sabha on Friday that it has finalised the National Policy for Rare Diseases, 2021 in which voluntary crowdfunding for the treatment of such rare diseases was okayed. The national policy has been put out in the public domain too, Union minister of state for health and family welfare, Dr Bharati Pravin Pawar informed the lower house of Parliament of Friday.
The policy says it will be difficult for the government to fully finance the treatment of high-cost rare diseases. "The gap can however be filled by creating a digital platform for bringing together notified hospitals where such patients are receiving treatment or come for treatment, on the one hand, and prospective individual or corporate donors willing to support treatment of such patients," it said.
"The notified hospitals will share information relating to the patients, diseases from which they are suffering, estimated cost of treatment and details of bank accounts for donation/ contribution through online system. Donors will be able to view the details of patients and donate funds to a particular hospital. This will enable donors from various sections of the society to donate funds, which will be utilised for the treatment of patients suffering from rare diseases," the minister said in her reply.
Under this clause, the Centre has kept provision to rope in corporate sectors as well. "Ministry of Corporate Affairs will be requested to encourage PSUs and corporate houses to contribute as per the Companies Act as well as the provisions of the Companies (Corporate Social Responsibility Policy) Rules, 2014 (CSR Rules). Promoting health care including preventive health care is included in the list in the Schedule for CSR activities," the minister said in her reply.
"Treatment cost of the patient will be the first charge on this fund. Any leftover fund after meeting treatment cost can be utilized for research purpose also," she said.
The policy was approved by former health minister Dr Harsh Vardhan in March 2021. It was a revised comprehensive policy necessitated by the demands of various different stakeholders, the ministry said at that time. Under this policy, the Centre provides up to ₹20 lakh for one-time treatment and this is not only for BPL families but all who are eligible as per the norms of the Pradhan Mantri Jan Arogya Yojana