Crowdfunding for Rare Diseases

• 19 Jan 2021

Why in News

Recently, the Delhi High Court has ordered the Ministry of Health and Family Welfare to explore Crowdfunding to help two children, who are suffering from a Rare Disease known as Duchenne Muscular Dystrophy.

Key Points

• Constitutional Provision Involved:
  
  • The HC held that ‘Right to Health and Healthcare’ is a fundamental right which has been recognised by the Supreme Court to be a part of the ‘Right to life’ under Article 21 of the Constitution.
• Direction to the Society and Authorities:
  
  • The High Court directed the society in general and authorities in particular to ensure that the life of such children is not compromised, even if there is a small window of improving their chances of survival or even providing a better quality of life.
  • Directed the Ministry of Health and Family Welfare to give a specific timeline in respect of the finalisation and notification of the Draft Health Policy for Rare Diseases, 2020. The draft policy has a section where the government proposed crowdfunding for treatment of high-cost Rare Diseases.

CrowdFunding

• About:
  
  • Crowdfunding is a method of raising capital through the collective effort of a large number of individual investors.
  • This approach taps into the collective efforts of a large pool of individuals, primarily online via social media and crowdfunding platforms and leverages their networks for greater reach and exposure.
• Types:
  
  • Donation-Based Crowdfunding: Donation-based crowdfunding is a way to source money for a project by asking a large number of contributors to individually donate a small amount to it. In return, the backers may receive token rewards that increase in prestige as the size of the donation increases. For the smallest sums, however, the funder may receive nothing at all.
  • Rewards-Based Crowdfunding: Rewards-based crowdfunding involves individuals contributing to a business in exchange for a “reward,” typically a form of the product or service which company offers. Even though this method offers backers a reward, it’s still generally considered a subset of donation-based crowdfunding since there is no financial or equity return.
  • Equity-Based Crowdfunding: Unlike the donation-based and rewards-based methods, equity-based crowdfunding allows contributors to become part-owners of the company by trading capital for equity shares. As equity owners, the contributors receive a financial return on their investment and ultimately receive a share of the profits in the form of a dividend or distribution.
• Benefits:
  
  • Reach – By using a crowdfunding platform, one has access to thousands of accredited investors who can see, interact with, and share the fundraising campaign.
  • Presentation – By creating a crowdfunding campaign, one goes through the invaluable process of looking at the business from the top level—its history, traction, offerings, addressable market, value proposition, with digestible packages.
  • PR & Marketing – From launch to close, one can share and promote the campaign through social media, email newsletters, and other online marketing tactics.
  • Validation of Concept – Presenting the concept or business to the masses affords an excellent opportunity to validate and refine offering.
  • Efficiency – One of the best things about online crowdfunding is its ability to centralize and streamline fundraising efforts.

Rare Diseases

• A rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population.
  
  • There is no universally accepted definition of rare diseases and the definitions usually vary across different countries.
• Though rare diseases are of low prevalence and individually rare, collectively they affect a considerable proportion of the population.
• 80% of rare diseases are genetic in origin and hence disproportionately impact children.
• In India there are 56-72 million people affected by rare diseases.

Duchenne Muscular Dystrophy (DMD)

• About:
  
  • It is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.
• Symptoms:
  
  • Muscle weakness
  • Enlargement of the calves
  • A waddling gait
  • Lumbar lordosis (an inward curve of the spine)

Source:TH