Recently, the Delhi High Court directed the Ministry of Health and Family Welfare to consider crowdfunding to help two children suffering from Duchenne Muscular Dystrophy, a rare disease. This directive is a significant development due to its potential implications for healthcare funding.
Constitutional Provisions Underpinning the Decision
The court found that the ‘Right to Health and Healthcare’ is a fundamental right as recognized by Article 21 of the Constitution. The Supreme Court has previously interpreted this article to include the ‘Right to life.’ In light of this interpretation, the High Court instructed both the wider society and relevant authorities to ensure the health of affected children is not compromised.
Ministry of Health and Family Welfare’s Role
The High Court ordered the Ministry of Health and Family Welfare to provide a timeline for finalizing the Draft Health Policy for Rare Diseases, 2020. This draft policy proposes crowdfunding for treating high-cost rare diseases.
About Crowdfunding
Crowdfunding is a method of raising capital through collective efforts. It involves pooling resources from a large number of individuals primarily through online platforms, utilizing social media and crowdfunding platforms. This common cause approach enables greater reach and exposure.
Types of Crowdfunding
Crowdfunding can be categorized into three main types:
– Donation-Based Crowdfunding: Here, a large number of contributors donate small amounts towards a project. Contributors may receive token rewards, the value of which increase with the donation size. However, for very small sums, contributors may receive no rewards at all.
– Rewards-Based Crowdfunding: This involves contribution to a business in return for rewards, generally some form of product or service the company provides. Despite offering a reward, this method is considered a subset of donation-based crowdfunding as there is no financial or equity return.
– Equity-Based Crowdfunding: Unlike the donation and rewards-based methods, equity-based crowdfunding allows contributors to become part-owners of the company, exchanging capital for equity shares. As equity owners, contributors receive a financial return on their investment and share in the profits as dividends or distributions.
Advantages of Crowdfunding
Crowdfunding brings numerous benefits. It provides reach to thousands of potential investors, helps in presenting the business or cause from a top-level perspective, aids in PR and marketing, allows concept validation and refinement, and facilitates efficient, centralized, and streamlined fundraising efforts.
Understanding Rare Diseases
Rare diseases are health conditions of low prevalence affecting a small number of people. Although definitions vary globally, rare diseases collectively impact a substantial population segment. 80% of rare diseases are genetic, disproportionately affecting children. In India, 56-72 million people are affected by rare diseases.
Duchenne Muscular Dystrophy (DMD)
DMD is a genetic disorder characterized by progressive muscle degeneration and weakness. This degradation is a result of alterations in dystrophin, a protein essential for maintaining muscle cell integrity. Symptoms of DMD include muscle weakness, calf enlargement, a waddling gait, and an inward spinal curve.