With the advent of media and technology, their benefits never cease to impress us all. We are all familiar with social media posts seeking monetary help to treat kids suffering from rare diseases. It prompts us to donate even if it is a mere sum of ₹1000. However, what crowdfunding is about lies in the fact that if hundred people worldwide donate ₹1000, the amount will be one lakh rupees. So, this benefit of multiple sources for donations to pool money is the sole factor that makes crowdfunding valuable.
It involves reward, donation, equity, and peer-to-peer crowdfunding. Raising funds for medical treatment is usually included under the header of Donation Crowdfunding, as it includes raising funds for philanthropic, social, artistic, or other purposes. In this type of funding, there are no incentives for the donors, and the donations are a pure act of philanthropy. Crowdfunding is not to be confused with traditional fundraising. It is a voluntary donation for a specific purpose or project and is usually online, which is unlikely for traditional offline charity fundraising.
The recent case of Arif v. State of Kerala brought out the impending need for regulating crowdfunding for medical treatments. The petitioner sought the state's help in procuring medicine for his son's treatment for a rare disease. Due to the exorbitant price, he needed the help of the state to import it. The judge highlighted that private entities crowdsourcing money for such treatments must be regulated by involving the state machinery. The judge said, "There must be some government control over the money being collected via crowdfunding for such treatments. Every 'Tom, Dick and Harry' cannot be permitted to raise funds like this." The statements also emphasised that the private entities may or may not utilise the money for the original task. The Delhi High Court promoted the finalisation of Draft National Policy for Rare Diseases while hearing the plea of parents who seek free treatment from the government for their kids who suffer from a rare disease known as Duchenne Muscular Dystrophy.
The Draft National Policy for Rare Diseases, 2021 aims to use crowdfunding as a valuable means for sourcing help to substitute governmental funds for assistance. It "endeavours to create an alternate funding mechanism through setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases". The government promises help up to a certain level, for example, ₹20 lakhs. However, as explained earlier, the medicinal costs for treating rare diseases go up to a staggering $2,125,000, nearly ₹16 crores. It is the amount for a single infusion of Zolgensma, the drug for Arif's son. Rare diseases are an economic burden for a nation that hampers their inclusion in public health policy development matters. To overcome such situations, the government plans to seek help from the efficient method of crowdfunding through online platforms from capable donors, individuals and corporate houses, and regulate it by making the hospitals collect the money and by encouraging corporate houses by citing as a part of CSR (Corporate Social Responsibility).
The development of policy for the same needs to be implemented, but even this draft NPRD has various loopholes for practical implementations like no timeline or eligibility guidelines.
Furthermore, it has not seen the daylight, so it is tough to cater to when the policy comes into existence for implementation. These heavily priced drugs can be lowered in prices if they are available in India. However, it involves negotiations between the governments of India and America and the negotiations between the producer company and other concerned authorities. As the number of people suffering from rare diseases is small, they cannot prove a significant market for drug manufacturers. For this reason, the other name for rare diseases is 'orphan diseases,' and the treatment drugs are called 'orphan drugs.'
Unlike the USA, the non-availability of insurance avenues is a contributing factor for the pursuance of crowdfunding as a valuable source of help. The IRDA states that anything genetic is not covered. The insurance coverage being extensive in the country highlights the hindrance to insurance as an option. This, along with several factors, promotes the government's stance for the 'voluntary crowdfunding mechanism.' It is agreeable that with proper regulations, crowdfunding, which ensures that the monetary help reaches those who are in dire need of it, proves to be a pivotal stance for growth and development in the treatment of rare diseases in India. It is an efficient way of recognising the proper usage of constrained resources. It also encourages a great sense of responsibility and belongingness in the community, strengthening the societal aspects in this modern era.