Aanchal Mishra
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Written By: Aanchal Mishra | Updated : September 2, 2024 7:45 PM IST
This national health policy provides financial support of Rs 50 lakh per patient. (Photo: Freepik)
Rare Diseases: The Ministry of Health and Family Welfare recently in a press release notified that a total of 63 rare diseases have been included in its flagship program, the National Policy for Rare Diseases, promoting early test, screenings and prevention of rare disease in India. The diseases were included on the recommendation of Central Technical Committee for Rare Diseases.
The government of India launched the National Policy for Rare Diseases with the Ministry of Health and Family welfare to enhance focus of detection and prevention of rare diseases in India. The National Policy for Rare Diseases was launched in 2021 with an aim to improve the public healthcare sector and accelerate more research and studies in regard to rare diseases.
This national health policy provides financial support of Rs 50 lakh per patient under the umbrella scheme of Rashtriya Arogya Nidhi.
According to the National Organization for Rare Disorders, a rare disease is a condition that affects fewer than 200,000 Americans. The world health organization defines rare diseases as a disease that affects fewer than 65 per 100,000 people.
As per the Indian Organization for Rare Diseases, there are a total 450 identified rare diseases in India out of the 7,000 to 8,000 rare diseases globally. However, more comprehensive research and data collection is needed to recognize the prevalence of rare diseases.
Some of the rare diseases among the 63 listed ones are Pompe Disease, Hypophosphatasia, rare immune disorders, Gaucher Disease and more. The newly added disease lists cystinosis and hereditary angioedema among more. At present, there are 63 rare diseases included in the National Policy for Rare Diseases.
Although India lacks a proper research and data on how many people suffer from which kind of rare diseases due to many obscure reasons, there are 450 identified rare diseases in India. Rare diseases are extremely rare and difficult to detect early, given their complexity and rarity.
The drug manufacturing sector also produces less medicines for rare diseases given the rare number of patients, meaning less demand in the market. However, there are a few manufacturing companies making drugs for rare diseases.
There is an urgent need to create more awareness in both the public and medical fraternity to enhance India's progress in detection, prevention and treatment of rare diseases. Some commonly reported rare diseases include primary immunodeficiency disorders, lysosomal storage disorders and cystic fibrosis.
The cost of medicines for rare diseases can be really expensive due to the rarity and unusualness. A very few manufacturers are making drugs for rare diseases in India. The cost of therapies is higher than one might think. As per government estimation, the cost of treatment for some rare diseases in a child weighing 10 kg may vary from Rs 10 lakh to more than 1 crore.
The National Policy for Rare Diseases provides financial support of Rs 50 Lakh to each patient under the Umbrella Scheme of Rashtriya Arogaya Nidhi. This health policy is meant to provide financial support to people below the poverty line and people who come under the norms of Pradhan Mantri Jan Arogya Yojana. People can avail themselves of the National Policy for Rare Diseases at the notified Centres of Excellence (CoEs) for Rare Diseases. Support from state government and voluntary crowdfunding are other major sources of funding for rare diseases.
At present, 1,118 patients have benefitted from this scheme.
Here are some of the tips provided by the National Policy for Rare Diseases on prevention of rare diseases in India.
