By Khushboo Jain
World Rare Disease Day 2020: Rare diseases are one of the greatest challenges faced by India's healthcare system. So, what is considered a rare disease? According to the Ministry of Health and Family Welfare, 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 are around 6,000 to 8,000 rare diseases that exist globally, out of which 450 have been recorded in India, affecting 72 to 96 million people in the country. These include thalassemia, auto-immune diseases, rare cancers amongst others.
World Rare Disease Day 2020: Challenges for doctors and healthcare professionals
New rare diseases and conditions are being regularly identified and reported in medical literature, making it more complex and challenging for doctors and healthcare professionals to cope with. In 2013, a study conducted by Shire Human Genetic Technologies revealed that the average time to diagnose rare diseases in the USA is about 7.6 years. In developing countries, notably, the time taken to arrive at a diagnosis is much longer.
World Rare Disease Day 2020: Treatment cost of rare diseases
As stated in a report by the Ministry of Health and Family Welfare, the treatment cost of some of the rare diseases is somewhere between INR 10 lakh to 1crore per year. Also, the patient has to be on the treatment for his/her entire life, during which, depending on the patient's age, there is a regular increase in the dosage and cost of the medicine.
For a middle-class family or those who are living below the poverty line, arranging such a huge amount is impossible. In such cases, crowdfunding can serve as a viable option. Crowdfunding has helped many patients raise funds for the treatment of their rare diseases, reducing the financial burden on them and their families.
World Rare Disease Day 2020: Crowdfunding as an alternative model
As an alternative model of financing expensive medical treatments and surgeries, crowdfunding has also proved useful for patients suffering from rare diseases. Also, not just patients, but crowdfunding has also helped in funding research to find a cure or treatment for some of the rare diseases.
World Rare Disease Day 2020: Crowdfunding goes beyond helping patients
Researching a cure or treatment for a rare disease takes an ample amount of investment in terms of both time and money. Crowdfunding can take care of the money part with the help of generous donors.
There are some crowdfunding platforms that are also connecting patients suffering from rare diseases with the researchers around the world. For instance, Causevox, a US based fundraising platform designed for non-profits, along with the support of Rare Genomics Institute, connects children with diseases so rare with top scientists, and helps fund the studies using crowdfunding.
World Rare Disease Day 2020: Government making efforts through Ayushman Bharat
Under the recently released draft of National Policy for Rare Diseases, the Ministry of Health and Family Welfare plans to provide financial support of up to Rs. 15 lakh for treatment of certain rare diseases, to patients living below poverty line. Through this policy, the Government has taken a great step that will extend the benefits of their Ayushman Bharat Scheme to more people.
Given the increase in internet penetration in India and the rise of social media usage, crowdfunding has the power to reach a large number of people in a short period of time. In a way, crowdfunding is helping in its mission of improving the healthcare system in India.
The columnist is Co-Founder and COO, ImpactGuru.com. Views expressed are the author's own.