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How crowdfunding can help finance rare disease patients in India? – Times of India

Every year, the last day of February is observed as Rare Disease Day to raise awareness about rare diseases and the impact that they can have on patients’ lives. The World Health Organization defines a rare disease as an often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population. 

Globally, there are over 300 million people living with a rare disease. In India, considering the population size, the National Health Portal Of India determines a disease to be rare when it affects fewer than 1 in 2500 individuals. The National Policy For Treatment of Rare Diseases, 2017 estimates that somewhere between 72 to 96 million Indians are battling rare diseases, out of which 80% are children! 

Some of the commonly reported rare diseases in India include Primary immunodeficiency disorders, Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, Fabry disease, Cystic Fibrosis, Osteogenesis Imperfecta, and Spinal Muscular Atrophy. 

Challenges And High Costs Of Treatment

A major challenge in rare diseases is that due to lack of awareness and difficulty in diagnostic modalities – it may take up to years to accurately diagnose them. Availability and access to medicines and treatments are extremely important to reduce morbidity and mortality accompanying the nature of rare diseases. In cases where treatment is available, it is extremely costly, placing a huge financial strain on the patients and their families. 

At present, very few pharmaceutical industries are manufacturing drugs for rare diseases so, in order to compensate for the cost of research and development, the cost of these drugs is extremely high. With some treatments being lifelong, the drug doses and costs increase with age and weight. For instance, the rare disease – Spinal Muscular Atrophy, requires what is cited to be the most expensive treatment in the world; costing as high as 16 Crores! Hence, affording life-saving treatments can extend way beyond the paying capacity of an average Indian household.

National Policy on Rare Diseases, 2021

In order to address the various challenges associated with rare diseases in India, the first National Policy on Rare Diseases, released on 30th March 2021, outlined India’s approach for the prevention and management of rare diseases. The policy aims to increase the focus on indigenous research and local production of medicines, lower the cost of treatment of rare diseases as well as screen and detect rare diseases at the early stages, which will in turn help in their prevention. 

The highlight of the policy is that considering the financial constraint, the government itself encourages voluntary crowdfunding to generate funds for the treatment of rare diseases. 

Crowdfunding – A Viable Option To Raise Funds For Rare Disease Treatments

The overall out-of-pocket expenses on health in India is one of the highest in the world. In such circumstances, affording expensive treatments for rare diseases adds more strain to the financial savings of families. However, in recent times, crowdfunding is emerging to be one of the most reliable and feasible options for financing rare disease treatments.

Crowdfunding is the process of raising funds online through small donations from a large number of people on the internet. Patients diagnosed with SMA, Pompe disease, Duchenne Muscular Dystrophy (DMD), and other rare diseases have turned to various online crowdfunding platforms in India and received immense financial support to beat these diseases. 

How To Crowdfund For Rare Disease Treatment

To raise the required funds for your cause, it is extremely important to choose the right crowdfunding platform. Some of the important features of an ideal platform are – a user-friendly experience, personalized assistance, flexible payment options, and hassle-free fund withdrawal of funds raised.

 

The greatest and most helpful feature of donation-based crowdfunding is that there is no payback liability. Social media has made it extremely easy for individuals and organizations to share their fundraisers and raise money through crowdfunding. In fact, the government of India acknowledged crowdfunding’s potential to help patients with rare diseases. Moreover, it also saw a GST exemption on expensive imported drugs like Zolgensma and Viltepso used to treat SMA and DMD respectively. 

The fight against rare diseases is difficult with the many uncertainties and challenges associated with it. However, with alternatives like crowdfunding, one hopes that more and more families can get the right help at the right time to afford life-saving treatments for rare diseases. 



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Disclaimer

Views expressed above are the author’s own.



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